My CLL Journey

Final Blog Entry

2008-12-23T13:49:00.000-08:00

This is the final entry I will make on my blog. I have been in hospital for four weeks so far with two very nasty infections, the second of which is an infected mouth. This has stopped me being able eat anything and gave me such excruciating pain that I have decided I cannot take any more. The anti-biotics have been effective only the extent of minimising the infections but are unable to get rid of them. The best efforts of combining Revlimid with Rituxamab and donor white blood cells has been unable to get my bone marrow functioning. Consequently I have asked to be transferred as soon as possible to our local Hospice, where I will see out my last days comfortably and pain free.

After my September period in hospital with a seriously infected chest, I had five weeks in which I recovered from that experience. Unfortunately, Tina and I caught colds in the fifth week which resulted in my being back in hospital for another three weeks with infected sinuses. I was discharged on Sunday 23rd November only to be back in two days later on the Tuesday with my current problems. The thing about CLL is that it does not itself kill you, it is that infections eventually do that job.

I want to thank my darling wife, Tina, who has been the most wonderful support to me, not only through these recent tough weeks and years, but throughout our 41 years of life together. I also want to pay tribute to the support given to both of us by our two lovely children, Anna and Matthew and their respective families and all our relatives and friends who followed the ups and downs of these past six years since I was first diagnosed.

A Red Letter Day

2008-10-12T03:27:00.000-07:00

Friday 10th October 2008

I am posting this entry before trying to catch up the past three weeks for reasons which will be obvious. It is a big “Red Letter” day today with news from the West Sussex Primary Care Trust saying they will fund my Revlimid!!!! As you can imagine Tina and I jumped for joy. I have a huge thank you to send to Colin Ross of Horsham for his determination in taking the PCT to the High Court and winning his case. He opened the door and it is possible I am the first person to walk in after him – so to speak. I shall be discussing next moves with Tim Corbett et al on Monday. It was nice that Tim left a message on our answerphone as well, in case we hadn’t heard. Today is a long session at the Day Unit, so up earlier than usual to get there for 9am. I have a bag of platelets and then a session of Vigam. I am checked over by Dr Jo and mention the discomfort in my left upper chest and shoulder, which I have put down as a legacy of the acute constipation I had on Sunday. I have an ECG test which shows normal. My blood results today are - Wbc: 6.2; Neuts: 0.4; Lymph: 5.7; Hbn: 8.1; PLT: 13; CRP: 48. So my neutrophils are up from 0.1 on Monday – good news! – but I am anaemic again and will have a transfusion of red cells on Monday. My platelet count is still extremely low, but the blood test was taken before today’s transfusion, so the count could go up by Monday. My weight today is 75.6kgs but some of it is fluid on my legs. Now where has that come from? I eventually leave the hospital about 3.30pm and we arrive home to be greeted with the letter from the PCT. I call Matthew and text Anna and lots of family and friends with the good news. Keith drops by on his way home to join our celebration. I have a half glass of wine but later feel rather woozy. Perhaps I shouldn’t be drinking any alcohol at all while I am on Thalidomide! I had better check that out and see if it will also apply to Revlimid. I hope not!!

A Second Week in Dock

2008-10-03T07:11:00.000-07:00

Monday 15th to Sunday 21st September 2008

I sleep last night for an uninterrupted three hours from midnight to 3am, which is a real bonus. But I am still here after a week in which very little progress seems to have occurred. This view is shared by John Duncan, who is the duty ward consultant this week. He puts in place a plan to try to move things on. I am to have a CT scan of chest and sinuses, a referral to the chest consultant with a view to a bronchoscopy, a review of my current anti-biotics and I need to be given some platelets. I find that the cannula on the back of my right hand has leaked while I was having my morning infusion – all over my blanket and sheets! Not sure how much went in my vein!! I have a visit from Jim late morning and do a little work in the afternoon, filing the returned questionnaires relating to my project. Kate gets my fourth cannula into place on the back of my left forearm. It is a very good site and a good vein – and gives me more freedom of movement than any of the previous cannulas have done. My blood results are Wbc: 3.5; Neuts 0.0; Hbn: 10.4; PLT: 21; CRP: 174. So here I am with my immune system right on the floor! Tina visits in the evening after work. She can only get away at 6pm, so it makes for a long evening for her. My temperatures today have ranged from 36.9 to a peak of 38.4.

I am awake at 5.15am Tuesday morning coughing up lots nasty sputum, some of which is bloody. There is a lot of activity for me today with my going on to the anti-fungal, Ambisone, 215 mgs once daily - it looks like a large bag of liquid sherbet!! – I have a CT scan of my chest and sinuses and then have a PICC line fitted into my right upper arm. This is great as it is becoming extremely difficult to get into my veins. At last I am able to have Immodium and take one capsule after lunch. My blood results today are – Wbc: 2.4; Neuts: 0.0; Lymph: 2.0; Hbn: 93; PLT: 16; CRP: 153. My weight is 74kgs. I have two bags of platelets. A count of 16 is amazingly low. They definitely need beefing up ahead of the bronchoscopy I will have tomorrow and had to be transfused before the fitting of the PICC line. I get a chance to see the x-ray showing where my PICC line has gone inside my chest – up the main vein in my right arm and down into my chest just to the right of my sternum. Tina is joined by Mia Morris when she visits in the evening. Six hours after my PICC line is fitted I am getting soreness on my skin from the Dermafilm dressing that has been used. I knew this would happen as it was the same last April when I had my first one. So the dressing is changed to the type used with cannulas, although Dermafilm is still needed to cover the entry site as, being transparent, it means that the site is always visible. We will have to see how this works, but by 3am it is worse and the site is redressed again. I am nil-by-mouth from midnight ahead of the bronchoscopy first thing in the morning. I have two big sweats during the night and have two changes of T-shirt. My temperature today is checked six times and goes from 37 to a peak of 38.5 at 9.45pm.

No breakfast for me Wednesday morning and I am away to the Endoscopy Department just after 8.30am. I think the annoying secretions that have been tickling my throat for the past week seem to have gone - if so, that is very good news. Also it appears that the one Immodium capsule yesterday has worked! Hurray! I am in for the Bronchoscopy at 9.30am and out in 20 minutes. The actual procedure takes about 10 minutes. Kate Hurt is the practitioner with Mark Jackson looking on. Once again it is a most appalling experience and I am coughing and spluttering as the scope goes down the back of my throat. They get a suitable amount of samples of gunge for analysis and I am soon out into the recovery room. Unlike the last time, my recovery is comfortable and I am able to rest, read, do some Sudoku and I have no nasty after effects. Whilst lying there I have the urge for some proper fish and chips and resolve that Tina and I will have some together tomorrow evening. I am there for two hours getting over the sedation and having my blood pressure, oxygen levels and temperature regularly checked. In fact my oxygen level dips, so I have to have 4 litres of oxygen given to me before I can go. After lunch I have my PICC line dressing changed again and it is decided that it must be changed everyday to avoid my skin getting cut. My blood results today are – Wbc: 2.0; Neuts: 0.0; Lymph: 1.7; Hbn: 8.0; PLT: 27; CRP: 165. My weight is 74kgs. By late afternoon the news abroad is of world finance in total chaos. Lloyds TSB is “encouraged” by the government to take over HBOS at a good price per share by today’s values but less than a quarter of its valuation earlier this year. The US government comes out with a multi-million rescue package for the giant insurance company AIG. There seems to be no end in sight for what is the worst financial crisis since 1929. At 9pm I have a unit of red cells, with two more to follow first thing tomorrow. My temperature shows signs of improvement as I have no 38 degree peak today and it ranges from 36.7 to 37.8. However I am still having big sweats late evening and during the night, with a change of T-shirt being needed.

I am told by Kat on Thursday morning that the CT scan indicates that I have a bacterial infection, rather than fungal. However they want to see the results of the bronchoscopy samples before drawing any definitive conclusions. My blood results today are – Wbc: 2.2; Neuts: 0.0.; Lymph: 1.8; Hbn: 8.5: PLT: 18; CRP: 140. So my platelets are still only 18 after two units were pumped into me ahead of the bronchoscopy. What’s going on? I ask myself. My weight is again 74 kgs. Peter visits in the morning, just in time to share a cafetiere of coffee with me. Suzanne is still snuffling with the leftovers of her cold so she is having a stroll on the seafront. We have a good chat about all this dodgy dealing that has brought the ceiling crashing down on top of the world of finance. Peter always worked in rock solid government bonds and triple A company bonds. Not for him all this spivvy short selling and derivatives. Sr Pete also comes in to give me Holy Communion. After lunch I have visits from Vincent Meagher and Bill Swallow, so I have plenty of company today. Tina arrives about 6.30pm with our fish and chips and we indulge ourselves with the best meal of my stay so far! A bottle of Muscadet would have gone down well with it as well!!! But you can’t have everything. At 9pm my PICC line dressing is taken off to show that the area immediately around the entry site is pink and sore and that there are three separate small places below the securing plate where the skin has been cut into - all this since yesterday afternoon. Lucy redresses it with Mepore and with no Tegaderm at all. This means that the entry site is no longer visible, but at least the chances of further skin damage should be minimised. My temperatures today are 36.7 on three occasions and a maximum of 37.4. I have no sweats to speak of and do not have to change my T-shirt at all. This is all promising news. I sleep on the bed from midnight to 2am and then change into pyjamas and get into bed for the first time since I was admitted. I sleep soundly until past 5am. Things are definitely improving!!

It is Friday and I am still coughing up loads of bloody sputum when I stir in the morning, so that side of things does not seem to have changed. By 11am I have brought my blog right up the date at last!! I am seen by John Duncan who tells me I now have 0.1 of a neutrophyl – yippee!! – and that my CRP is down to 89. This is all good news but I still have inflammation in my lower lung. The team will review my treatment plan on Monday. He has stopped the Clarithromycin tablets. My blood results today are – Wbc: 3.1; Neuts: 0.1; Lymph: 2.9; Hbn: 11.1; PLT: 17; CRP: 89. My weight today is 73 kgs. I have a big sweat mid afternoon and my temperature peak before it must have been quite high but of course it isn’t possible to know what it was. My guess is that it was over 38. I get a phone call from Anna in Palm Springs – which is nice. They are off to Yosemite, Sequoia and Kings before taking the Amtrak to New York and home. I then have visits from Mia Morris and Fr David. It is most amusing as Niamh Dineen, the trainee nurse, is tending to me at the time. Fr David recognises her surname as coming from west Cork like him. It transpires that he knew her late uncle, who was a priest and then realises that he knew her father as well – what a small world! Tina is in to see me about 6.45pm and after that I have a quiet evening and night, dozing and listening to my i-pod. My temperatures today have ranged from 36 to 37.1, give or take that likely higher spike in the afternoon.

I trim my beard Saturday morning, which makes me feel a lot tidier. The big news today is the letter from the West Sussex PCT saying that they have put back their PIN panel’s considering my appeal “in order for specialist advice to be sought”. Strikes me they should have sought specialist advice in the first place, then they might have made the right decision. They have obviously been badly stung by the loss of their High Court case. I say “good”. I have a visit from Peter Felchlin at lunchtime. Marva and he had a good time in Bath and Cornwall and were able to find Wakem family gravestones in Cornish churchyards dating well back into the 18th century. We are shortly joined by Matthew, Lily and Mia. Lily enjoys her rides on my moving bed, which she remembers from 18 months ago. Mia is far less keen. My blood results today are – Wbc: 2.9; Neuts: 0.1; Lymph: 2.4; Hbn: 10.7: PLT: 19; CRP: 50. So that is more good news on the level of infection, which has now been going down day by day. My weight today is still 73kgs. Tina and Marva visit me around 4pm and the rest of the day I spend quietly, reading and listening to the Ryder Cup golf on the radio. My temperature today varies from 36.3 to 37.4 and no sweats.

I am seen again by John Duncan on Sunday morning. With things progressing, albeit very slowly, they will be looking to discharge me next week, possibly towards the end of the week. They could continue giving me anti-biotics in the Day Unit but the key issue is to get my chest right first and to be sure that the infection is not fungal as well as bacterial. My blood results today are – Wbc: 2.1; Neuts: 0.1; Lymph: 1.6; Hbn: 10.4; PLT: 17; CRP: 32. My weight is the same – 73 kgs. I do some work on my project for a few hours either side of lunch and at 3pm have a bag of platelets. Sarah cleans and redresses my PICC line. It is looking good and the soreness has lessened. Tina, Marva and Peter visit after having lunch with Matthew and the girls at Shermanbury. I say my farewells and bon voyage to the Felchlins as they fly back to LA tomorrow. I have another quiet evening listening to the USA beating Europe in the Ryder Cup. I doze through to 1.30am and then take to my bed. This is only the second time so far in these past two weeks. I sleep very well.

The Ceiling Falls In

2008-10-03T03:58:00.000-07:00

Monday 8th to Sunday 14th September 2008

I work from home on Monday. Doing my physio around 12.30pm I realise that there is a change in the quantity and nature of the gunge I cough up – the official terms are “sputum” and “expectorate”. As the afternoon progresses I am constantly coughing up more stuff, then feeling fluey and muzzy headed. I check my temperature around 4.15p – mid 37s – and by 5pm it is 38. What an unbelievable reaction after just one short course of the steroid. I call the Day Unit and am advised to check in through A & E but that a bed was available in the Medical Assessment and Surgical Unit (MASU). Tina and I check into A & E and are immediately attended to, which is excellent. After preliminary questioning, I am cannulated with remarkable ease by the nurse. Even more remarkable, it is my right arm. This is the first successful entry into a vein in my right arm for the first time this year. I have a chest x-ray and am seen by a doctor who tells me I have “pneumonia” in my right lung. I later find out that pneumonia – which has quite dramatic connotations – is a generic term for chest infection, but that of course isn’t explained – an unnecessary cause for anxiety in my opinion. My temperature at 8pm is 39 – I have never had that before – and at 10pm is down a bit to 38.2. I am prescribed Clarithromycin 500mg tablets twice daily, 1 gram of intra-veinous Amoxycillin three times daily and put on a large saline drip. My blood results are soon with me – Wbc: 20.7; Neuts: 1.2; Lymph: 19; Hbn: 9.3; PLT: 42; and CRP: 88.

I am moved to MASU at 11pm, Tina leaves for home and I try to settle down for the night. This is more easily said than done as I am coughing and spluttering all the time, especially when laying horizontal. So I prop myself up, but I cannot sleep. Around 4.30am I coughing up stuff big time and it makes my shoulders ache so much I have paracetomol. I have a big head sweat around 6am and my sputum is now rather bloody. I had arranged five appointments in London today and tomorrow and have to walk up to the 6th floor foyer area to get a signal on my phone. Luckily I am able to get through to everyone to cancel. I get sympathetic responses. But this is a real nuisance as it took me ages to make the appointments in the first place and I will have to start again, as and when I am back on my feet. Kat sees me at 10.30am, changes me on to Tazocin – three times daily - and orders another saline drip. I am later seen by a new haematology consultant – well new to me – Timothy Chevassut. At 12.30pm I am moved to the Haemotology Ward in the six bed room they share with Renal. My lunch is lousy. I realise that I have not done my physio since Monday morning, so have a big session. I have intra-veinous Gentamycin – once daily - added to the Tazocin. Tina arrives late afternoon. I am feeling absolutely knackered and my temperature at 6pm is 39.9. Now that is HIGH! I have two paracetomol and a big sweat. I am dozing so much that when Tina leaves for home I am asleep. That is the first time that has ever happened. By 11pm my temperature is 38.2 and I am given a bag of platelets. I then get the shivers and shakes, as if I am hot and cold at the same time. Jess tells me it is “rigour” which can occur as the body cools down from a high temperature. She gives me a couple of paracetmol and it soon stops. But it was a funny experience while it lasted. I have more sweats through the night and have to change my T-shirt twice. I am feeling really grotty.

My early morning temperature check on Wednesday shows me still up at 38.3. I have a home-supplied breakfast of yogourt, muesli and mango. It is much better than the hospital food. By 10am my eyes are not focussing well, I am feeling weak headed and very dozy. My blood results today are – Wbc: 9.9; Neuts: 0.6; Lymph: 8.2; Hbn: 6.9; PLT: 42; and a CRP reading of 434. So I am neutropenic and seriously anaemic, with a very high indication of infection. Secretions are trickling in at the bottom of my throat, from where I don’t know and these are making me cough involuntarily, which then brings up stuff from lower down. This makes the muscles in my stomach, chest and diaphragm very sore. I get a surprise visit from Matthew in the morning - which is great – and we are shortly joined by Tina. I am seen by Timothy Chevassut and team. He cannot say for certain what the cause of the infection is, but its following immediately on the steroids cannot just be coincidental. I am to have two units of red cells, GCSF daily and to resume my colomycin by nebuliser. I am told that I will be here for a week. On the positive side my appetite has not been affected, although the taste of water is not too nice. So I am drinking diet coke and ginger beer, which taste much nicer. I have two very productive physio sessions and resolve to maintain this regime throughout my stay. Tina comes in at 5pm and she helps me to have my first wash. I have been too unsteady on my feet to have a shower or wash properly. I have anti-biotics and then blood, meanwhile my temperature moves from 38.7 to 38.1 to 36.9. By midnight the anti-biotics has one certain effect – I now have diarrhoea! I cannot sleep and sit up reading and doing Sudoku until 4.30am, coughing and spluttering.

The big story today is the High Court decision that West Sussex PCT must fund the supply of Revlimid to Colin Ross of Horsham, who has multiple myeloma. His consultant had unsuccessfully gone through the application and appeal process but Colin Ross had decided to challenge the PCT’s decision. I will be keen to read the full judgement as it has major implications for me, with my appeal supposedly being heard on Friday. It is difficult to know at this stage if any form of precedent has been set.

Thursday morning, my temperature at 6.30am is 37.6 and my diarrhoea continues - with regularity! It is beginning to give me a lot of discomfort. I duly supply a sample. I have established my breakfast regime of yogourt, bran flakes, cut fruit and honey. I get a text message from Anna in Los Angeles, which is lovely. My blood results today are – Wbc: 4.3; Neuts: 0.4; Lymph: 3.7; Hbn: 8.2; PLT 27; and CRP down to 299. My weight is 80kgs, but I put two or three kilos down to fluid in my legs from the steroid. I had noticed on the weekend that the backs of my thighs and knees had tightened up slightly. Sister Peter comes in late morning and gives me Holy Communion. She is such a lovely person. I have another two units of red cells starting around 2pm, but running slowly because of my temperature. This is followed by the Gentamycin, three hours of Vigam – my monthly dose – and then the Tazocin. It is all over by 2.15am – 12 hours of continuous infusions! Over that 12 hours my temperature is checked six times and varies from 36.8 to 38.5. Meanwhile in the late afternoon Tina is in and I can have another wash. In the evening I start back into John O’Farrell’s very amusing “An Utterly Impartial History of Britain – or 2000 Years of Upper Class Idiots in Charge”. I had a very sweaty night, changing my T-shirt twice, regularly having to visit the toilet and having some really weird dreams.

Friday morning starts with Tazocin, followed by another saline drip as I am at risk of dehydrating with all my diarrhoea. My physio is still rather painful and not helped that I have extra secretions finding their way to the back of my throat and making me cough involuntarily and earlier than I want to during the exercises. I have to rest up afterwards as it is very tiring. Timothy Chavassut changes me from Tazocin to Meropenem three times per day, as this may be more effective. I am also to resume Colomycin using my own nebuliser machine. My blood results today are – Wbc: 2.6; Neuts: 0.2; Lymph: 2.1; Hbn: 9.4; PLT: 18 (YES – 18!!!); CRP: 190. I am moved to room 3 mid afternoon and at last having some privacy. This gives me my own bathroom and I wash myself for the first time. I am recannulated for the second time since I have been here. Two days seems to be the limit the nurses want to risk with a cannula so as to prevent any additional infection. Tina is with me early evening and Matthew calls by later as Charrise is singing in Kemptown. He fixes my i-pod, which had refused to get going for me. I now can have music on tap. I have a bag of platelets to move my count up from an unprecedented 18. My temperatures today have hovered around 37.1 and 37.4 but peaked once at 38.4.

Today is the day West Sussex PCT is supposed to hear my appeal. I would be surprised if they do in fact hear it. I think it more likely they will delay it while they take legal advice following the decision of the High Court. If they turn me down, I would see it as a “knee jerk” reaction. The countrywide debate on funding of “individual needs” drugs is still bubbling, with the highly respected Kings Fund saying that people who can afford it should be allowed to “top up” the funding of non approved drugs, although they should also pay for their ongoing treatment relating to their condition. But they should not lose their rights to other forms of free NHS provision - as seems to be the case at the moment. Sounds like two-tiers could be forcing its way into the NHS and that would be really bad news.

By Saturday I think I am beginning to feel a bit better in myself, no doubt because of the four units of red cells I have been given. It does not mean that any of the symptoms I came in with have changed at all, because they have not, although my taste for water has improved slightly. My blood results today are – Wbc: 2.9; Neuts: 0.6; Lymph: 1.2; HBN: 9.4; PLT: 27; CRP: 191. My weight is 80kgs. This is high for me and probably due to fluid in my legs as a result of the steroids last week. Have I mentioned that before? I can’t remember. Tina, Marva and Peter come late morning. M & P flew in from LA last evening and are staying with us this weekend and next. Just our luck I should be in here! They bring me a super book “All the Saints of the City of the Angels” – an artistic tour of the many LA streets which are named after saints. It is beautifully illustrated from paintings by the author and tells fascinating stories of the respective saints and the streets themselves. Mary Alston from work joins us just before they leave and so at last meets Tina. About an hour later, as she is going, in come Tony and Pam. This is all very nice. Meanwhile I have five attempts made to get a blood sample from my arm to check on my Gentamycin levels – ouch!! My temperatures today are measured six times and vary between 37 and 38.2. I am still sleeping upright to minimise my coughing. This tends to give me neck ache over time, such that by 5.20am I have a headache and am given two Paracetomol to get rid of it.

Chaos breaks out on the international money markets on Sunday morning as the long established US bank Lehman Brothers goes belly up. It is another victim of the sub-prime mortgage scandal and the horrendous mess that banks all over the world have got themselves into by selling clients debts to other banks and engaging in dead dodgy financial dealings. Meanwhile the US government forces Merrill Lynch to be taken over by the Bank of America - one of the more solid operators over there. My bloods today are – Wbc: 1.9; Neuts: 0.1; Lymph: 1.7; Hbn: 8.9; PLT: 18; CRP: 146 - so no real change there, although I feeling much stronger in myself. My weight has dropped to 77kgs with the loss of the fluid from my legs. I have Holy Communion from Sr Peter at midday and after lunch and my physio I find I am in the frame of mind to resume typing my blog. I have to catch up from Tuesday of last week, just before the start of my new treatment, so there is plenty to be done. Tina, Marva and Peter arrive mid afternoon after having lunch at Matthew’s. Tina has brought in a CD which John Searle recorded for me this morning of the folk Mass he led to celebrate Racial Justice Sunday - what a lovely idea! It was also a Mass said for Tina’s parents, John and Eve, so all very appropriate. My temperature is measured four times today and range from 37.3 to 38 – still too high.

I Start My New Treatment

2008-10-03T03:53:00.000-07:00

Monday 1st to Sunday 7th September 2008

I am catching up on this week’s blog entry more than two weeks later than intended for reasons that will be obvious in my next week’s entry. I cancel my appointments in Tottenham for the day as I am going down to the RSCH in Brighton for my blood transfusion. Terry and Lesley call by in the morning as Tina has asked Terry if he could help us out with taking some stuff to the tip. They stop for coffee on the way back. Tina drops me off at 1.15pm for my transfusion. My two units only take three hours this time as they are now able to separate out the red cells from the other blood products, so that I do not need quite the quantity I had before. Clever aren’t they? I am on the phone quite a bit making work appointments for this week and next. I am still weary for the rest of the day.

On Tuesday I am back to Brighton for my monthly Pentamidine nebuliser, followed by clinic with Tim Corbett to discuss my new treatment regime and to collect my medications. My lymphocyte count is up to 18.7 and my platelets are down at 42, although the neutrophils are holding up at 1.8. Tim makes the point that there may be a risk of infection associated with my being treated with Dexamethasone (a steroid), due to my already compromised immune system. How prophetic that turns out to be!! There is also a risk of blood clotting with the Thalidomide.I should go on to aspirin to thin the blood when my platelets count goes above 50. They are well below that mark today so I must await developments. The regime is 10mgs of Dexamethasone for four days every two weeks, to run for two or three months, with one daily dose of 50mgs of Thalidomide ad infinitum – or until approval for Revlimid comes through – ha ha!!

I have a day in north London on Wednesday and work from home on Thursday and Friday and start the treatment Thursday morning. The big breakthrough news off the CLL Google alerts today is that scientists in Cardiff University and the Institute of Cancer Research have identified six genes associated with CLL, which could increase a person’s risk of contracting it. This is of course only the first tentative step towards a potential prevention programme, but could give encouragement to future generations.

We have a day shopping in Tunbridge Wells and meet up with Carol for lunch. I am looking for a decent pair of brown ankle boots, but decide to reflect on the prices asked - £100 and £120!! I am finding that my taste buds are changing a bit – water, Smoothies and even beer. I am also getting hiccoughs - all down to the steroids. However the good news is that after only two days medium sized “Henry” in my left armpit has reduced significantly in size – amazing. The Thalidomide, which I take in the evening, is, as predicted, giving me heavy eyelids and a general drowsy effect mainly overnight, rather than running into the day. I have my last dose of steroids on Sunday morning and we have Matthew, Charrise and the girls for lunch. Everything seems hunky dory.

Waiting for the Start of My New Treatment

2008-09-02T08:54:00.000-07:00

Tuesday 26th to Sunday 31st August 2008

I seem to have recovered some energy overnight and on Tuesday morning I am off to Wood Green to see a couple of people on my work project. Before I go I check my emails to find that I have a very prompt reply from Nick Herbert MP. I don’t know where he is taking his holiday, but I received his email at 11.30pm last night!! He is writing to the Chief Executive of my PCT about my case. Well, I could not ask for more! Later in the day I receive an acknowledgement from the convenor of the PIN panel as well. The panel will hear my appeal on Friday 12th September – fingers crossed for a successful outcome!

I work from home on Wednesday and Thursday and then go back up to Tottenham on Friday, followed by an afternoon at the office. By evening I am feeling really knackered and reckon I am probably anaemic. On Saturday Tina has planned a shopping day with Linda Bell. I walk up the road to get my newspaper and find my legs are heavy and I am out of breath. I call the haematology ward and Jim Rodgers gives me a lift for a blood test. It is confirmed that I need a couple of units of blood and I am booked in for Monday afternoon. We go to Steve and Sue’s for a barbecue supper. I keep to half a beer and a glass of wine as I have been getting headaches with more than a glass! It is Matthew’s birthday on Sunday, so we join him, Charrise and the girls for lunch in Ferring. I have to go via the hospital as I need to have a blood sample taken for a cross-match. When we get home I have a good hour’s sleep.

The Ceiling is Falling in – More Treatment ASAP

2008-08-25T13:51:00.000-07:00

Monday 11th to Monday 25th August 2008

It’s Bank Holiday Monday (25 August) and I am again having to play “catch up” on the happenings of the last two weeks. We celebrate Eva’s 2nd birthday with Anna and Nick over the weekend of 9/10th and also on Sunday, Jim and Cath Rodgers’ 40th anniversary. That day I also speak to my old friend John Mason on the phone about my blog. He has had a career in chiropody, podiatry and surgery. He talks me through how to deal with the nasty blister on the top of my toe. It’s all to do with my condition, my treatment and exposure to the sun. Tina and I then carry out John’s instructions and I am left with a fully dressed toe and an empty blister. He tells me not to touch it for five days and it should be all ok. Five days later we take off the dressings to find the blister half filled again. We drain and dress it once more, leave it for more than five days this time and find everything progressing well. I guess it took longer for me with my dodgy immune system. Two weeks later and the blister has completely gone with new skin in its place. Many thanks John!

I go to the office in London on Monday, work at home Tuesday and Tina and I have a day off together on Wednesday. We go to Lewes and buy a rather nice watch for her – my very belated 60th birthday present and 13 months overdue! On Thursday I am down to the RSCH in Brighton for my three hours of Vigam infusion. It turns out to be four and a half hours and I get a parking ticket. I am appealing and will get a letter of support from the Day Unit if needed. My weight today is 77.4 kgs and my bloods are quite good, although my lymphocyte count is 3.9 – an upward trend. I have managed to get out of having a second bone marrow biopsy. Taku thought there was an insufficient sample, but in the end it was enough.

I have a day working in London on Friday and we go to Tony and Pam’s in Sarre for the weekend. It is good fun, they are such great company and we have a very enjoyable time. The only drawback from being in company, either home or away, is always my health routines, physio, GCSF injections, etc. They can be quite intrusive and at times very anti-social. Still needs must!

I have a day at the office on Monday and put in a call to Tim Corbett to hear that the application for Revlimid has been turned down by the PIN Panel (Patients with Individual Needs) on the grounds that there is insfficient evidence of its efficacy in relation to CLL. Tim will appeal on my behalf, research more data to put to the panel and suggests I write to my MP – this is a fairly hot political issue at the moment, especially after the recent report on the decision making of these panels by the Rarer Cancers Forum. Tina and I are nonetheless at a low ebb that evening. I also hear that my bone marrow is 90% CLL cells – not surprising considering all the other symptoms I have.

On Tuesday I see Tim Godwin at the Yard for a chat. He is great and is very concerned to hear that things are starting to go downhill for me. Most of all he is very encouraging. He had another appointment immediately after seeing me and to my surprise and delight it was Dave Colella, together with his wife, saying goodbye to Tim on his retirement. Dave was my town centre beat officer in my Crawley days, with Tim as our superintendent. Dave had transferred to the Met some years back and has now done his time. Dave, of course, was amazed to see me and it was a rather nice reunion. I left the Yard en route to Tottenham in Tim’s staff car, courtesy of Tim’s staff officer, Sally. It was rather nice being chauffeured in a smart car, but I ended up at the wrong Tottenham nick and had to get another lift to the right one(!)

I worked at home on Wednesday and on Thursday morning Tina and I went down to the RSCH for my clinic. We saw Taku Sogay, with Tim Corbett coming in half way through for a chat. My weight is 77.5 kgs and my blood results are: Wbc: 7.1; Neuts: 1.5; Lymph: 4.2; Hbn: 9.6; PLT: 50. Tim has dictated the appeal letter so we will have it heard at the next PIN Panel meeting on 5 September. We discuss possible options should the appeal be unsuccessful, including the steroid Dexamethasone in combination with something else. I mention the very painful leg cramps I have been getting at night, albeit not every night thank goodness! I am prescribed a supply of quinine sulphate and get another three weeks supply of GCSF. I have also started to get night sweats – just my head – and not every night as yet.

We are up quite early for my 10.15am appointment at Kings, which we have with a new consultant, Robin Ireland. He is joined by Steve Devereux for a discussion on my treatment plan during the consultation. Various options were discussed including the dreaded CamPred. However, it is decided that I should start on Dexamethasone as soon as possible to “debulk” the CLL in my bone marrow. If the PCT approves the prescribing of Revlimid, I will have that to run alongside it. If not, then I will have Thalidomide instead, which does not need PCT approval. Each of these treatments is in tablet form and none is expected to have any invasive side effects, so I will be able to carry on working as normal – which is good! Robin will fax a letter to Tim Corbett today and I am to contact him next week for an early appointment. I am due back to Kings in two months. As we are leaving, Viki Bevan, the clinical nurse specialist, knowing the recent changes in my condition, makes a point of seeing us and we have a good chat. She is always so supportive. Isn’t that great and so very thoughtful. She asks me to let her know the result of the PCT appeal. Today for the first time we noticed that the Haematology Unit has a Mission Statement displayed in the waiting room. I can’t now remember what it said, but it was a good one and we both agreed they all live up to it. I call Anna and Matthew with our news in the evening.

At the weekend I type an email letter to my MP, Nick Herbert, asking for his help with the PCT appeal. Although it is the holiday month of August, his website states that his office will be staffed. I cite the Rarer Cancers Forum report on “Exceptional Case” applications to PCTs as well as detailing my situation. PCT cancer drug decisions have become a political hot potato recently, so here’s hoping. Tina takes Anna, Nick and Eva to Heathrow on Sunday morning as they have a photographic assignment in Los Angeles for the next four weeks or so. We then go to Jane and Richard’s in Shorne for lunch and I meet up with an old school friend, Michael Baulk. It is amazing as we have not seen each other in 47 years! We are both A level – failed former Grammar School pupils, but he was always the bright fellow with lots of flair and way ahead of the rest of us in the latest ideas, TV jingles and so on – and he is just the same as he was back then in so many ways. It was an absolute delight and we hope to keep in touch. We then zoom back to Worthing to babysit for Matthew and Charrise as it is their 6th wedding anniversary and they are dining out. They have a super meal.

Monday is a recovery day for me as I have so much gunge in my lungs which wants to get out, despite my physio. I was coughing a lot yesterday and seem to strained something in the area of my diaphragm. Instead of going to the Worthing Carnival, where Charrise was doing a singing spot in the afternoon, I decided that more physio and an hour or so rest was needed. So, Charrise, sorry we could not be there to support you, but the physio was essential and the rest did me a deal of good, because my coughing eased considerably, as did the discomfort in my diaphragm. Good thing it is Bank Holiday Monday. I would not have relished a day’s work in London given the way I felt.

Back with a Bump, Blood and Biopsy

2008-08-09T07:00:00.000-07:00

Monday 4th to Friday 8th August 2008

Monday is very much a recovery day for me after two days driving back through France – albeit we did less than 300 miles each day. Tina, of course has washing, ironing, shopping, etc. to do! I am feeling quite weary and guess that my haemoglobin count is low. I wanted to finish my blog, most of which I had typed while on holiday, but instead I sleep for two hours in the afternoon.

On Tuesday I go down to the Elton John Unit at Brighton for my Pentamidine nebuliser with Abby. I also have a blood test, the result of which is:- Wbc: 5.2; Neuts: 0.9; Lymph: 3.3; Monocytes: 1.0; Hbn: 9.2; PLT: 81. There is nothing good there at all. I am due back to the Day Unit on Thursday, so they line me up for two units of blood as well. No wonder I have been feeling weary. Despite six doses of GCSF whilst away, my neutrophils are back where they were just over two weeks ago. Whilst still within the “normal” range, 3.3 is the highest lymphocyte count I have had since my early “Campred” treatment last February. I note for the first time ever, a Monocyte count of 1.0 – slightly above the “normal” range. These are white blood cells which create macrophages, the scavengers and cleansers in the blood system. I don’t know what significance this might have, if any. I have a supply of a further six doses of GCSF at home, so I start another session this evening.

I now have a rather nasty blister well over 1” long sitting like a white slug on the top of one of my toes, so I work at home on Wednesday rather than risk going to London, bursting the blister and getting an infection.

I have a very long Thursday starting at 9.15am having a blood cross-match for my transfusion later and another blood test. The only good news of the day is that my weight is now 78kgs – over a kg up from three weeks ago and no doubt the result of some hearty eating in France! This is followed by an 11am clinic with Ros Johnston. My counts have changed little since Tuesday - Wbc: 5.2; Neuts: 1.8; Lymph: 2.5; Hbn: 9.5; PLT: 62. I forget to ask about the Monocytes. I am having a bone marrow biopsy in the Day Unit this afternoon and Ros tells me that the full results will not be available for about 10 days or so. It is suggested that I put back my next week’s appointment with Steve Devereux at Kings for another week, so that he will then have the results himself. I will have another clinic the day before (21 August) so that I will have a briefing on the results beforehand. She makes a referral to the consultant dermatologist about the blisters on my toes and gives me a prescription for another two weeks’ worth of GCSF. The application to the Primary Care Trust for the prescribing of Revlimid will go before their “PIN” Panel in the next day or so and their decision should be known by my 21 August appointment. Not being NHS licenced or “NICE” approved for CLL – and at £25,000 for a year’s supply, I have to have all my fingers and toes crossed. This is pretty important for me!

I have a transfusion of two units of blood in the Day Unit, starting at 2pm and going on until past 6pm. I read and doze through this until my bone marrow biopsy at 6.50pm. My bone marrow appointment was in fact 2pm and, because I was going to have a sedative, I have not eaten since breakfast at 8am. The registrar, Dr. Taku Sogai, carries out my biopsy with staff nurse Penny. The sedation is good and I remember nothing! I have no recollection of making notes in my notebook either, but, looking at them later, they are quite relevant, although a complete scribble. I must have another biopsy next Thursday from the left side of my pelvis. I don’t remember why. I burble down the phone to Tina to come and get me and then have something to eat. She tells me I got home at 8.30pm. It is all a bit of a haze, but at least there was no pain! - although the site of the biopsy bleeds quite a lot.

I recover enough for me to do a day’s work on Friday. Again the blister on my toe is too risky for a journey to London. Fortunately, although there will be plenty awaiting me at the office, I have plenty of work for me to do at home. It is also good therapy. Anna, Nick and Eva come to us in the evening for dinner, but by 9pm I am asleep!

I Resume My CLL Blog but My Condition Starts to Regress

2008-08-09T06:50:00.000-07:00

25th March to 3rd August 2008

Being busy with my new job and there not having been much significant change in the state of my chronic lymphocytic leukaemia condition for some time, I had let my blog slip since the end of March. So this entry is my attempt at catching up on those last four months - as briefly as possible.

Although getting through these last four months has been greatly aided by my being back at work and therefore having a real diversion from being totally health self-centred, Tina has been the real reason for my keeping my sanity and my sense of purpose. She has been just as fantastic this year as she was last year – and that was massive. Her promptings, reminders, advice and encouragement have been constant and brilliant – and at times when she has had more than enough pressures on herself from work and elsewhere. I really don’t know what I would have done without her. Anna and Matthew have been great, keeping in touch with all the ups and downs and I really look forward to Matthew’s 5 o’clock Friday afternoon calls.

I have felt pretty well all through this period, keeping clear of colds, etc., other than the sinusitis, which had started back in early February and is still with me. I was having monthly clinics at Brighton, but from early June they have become a little more frequent; I am usually seen by either Tim Corbett or Paul Hill. In late April I had found that the glands in my left armpit had started to enlarge – a symptom I came to know as far back as early 2003 - and by late May my neutrophil count went below 1.0 for the first time since February. Since then I have been on a series of GCSF injections to help boost my count. Despite this, my neutrophils do not seem to want to stay up for too long – which is a bit of a bind. The glands in my right armpit have also become enlarged, although not so much as in my left. I had a CT scan in late June, the results of which showed enlarged spleen, liver and glands in my duodenal area as well as confirming those in my armpits. So things are definitely on the move in the wrong direction for me. A bone marrow biopsy awaits me very soon – aaaagh!

I have had two clinics at Kings, one with a Doctor Robert Marcus and one with Steve Devereux. Dr Devereux saw me briefly on the first visit to tell me he was still “on the case” with the suppliers of Revlimid and was very hopeful of securing a supply. Unfortunately when we saw him again in June, things were not so hopeful. The early trials had had some unwanted side effects and the company had cancelled the appointment he had with them. He is still persisting with them, but advised that an approach to my Primary Care Trust, via Tim Corbett, would be a necessary second option. The only snag is that a year’s supply is likely to cost about £25,000 and not all PCTs are keen to spend that sort of money. However he feels that between them they would be able to make a convincing medical case. On the plus side is that I would not need the full treatment dosage (about £50,000 per year), rather that I would have a half dosage as “maintenance” for my condition.

Other than my recent neutrophil dip, my blood levels had been consistent, including my lymphocyte count – although this may read differently in the bone marrow of course. That was until my last clinic on 17th July when my haemoglobin count was only 10.4. Had I not been going on holiday straight away, no doubt I would have been back next week for a couple of units of blood. As our holiday has progressed I have felt more weary, but that could be the heat, rather than anaemia. We shall see next week when I have a follow-up blood test. Generally speaking my energy levels have been ok to date but I do not run for trains or buses any more and I must ensure I do not over-reach myself, especially with the current state of my immune system.

My weight has gradually improved, moving from 75 kgs in March to close on 77 kgs this month. This has no doubt been helped by my having my favourite jacket potato and chilli con carne every day I have at the office, plus our regular evening meal! I now have fully recovered my usual “good” appetite and my taste buds seem to be more or less back to normal. However, my sense of smell is still a problem.

With my sinusitis persisting – singing in the ears and a stuffy feeling in the head - I was referred to an ENT consultant in April. He advised twice daily hot water vapours, drinking plenty of liquids and to continue consistently with the once daily steroid-based nasal spray – which I confessed I had not been doing. He told me I may well need to carry on with this regime for a long time – like forever!

I also had a referral to a dermatologist to have a small non-malignant spot removed from my head by cryotherapy. I was told that it was old sun damage, typical for the bald ones like me! The referral was useful as the dermatologist told me that the methylprednisolone treatment last year had caused my skin to become thinner and that I must avoid direct sunlight as much as possible and use high factor sun cream. The strange thing is that I have looked suspiciously healthy all year – right from January. It seems almost as silly as this - that I can sit in doors with the sun shining outside and still get a suntan!! During our recent two weeks in France I got an extremely sore scalp, despite keeping out of the sun and wearing a hat. The backs of my hands are red and sore and I have what appears to be an allergic rash on both my forearms – and this is a week after coming home! I have also had the unusual phenomenon of blisters on the top of my toes – all very odd and very uncomfortable. I guess this is all down to exposure to the sun. With the thinning of my skin has come the tendency for the skin on my head and hands to cut or damage very easily - including the backs of my thumbs for some reason. The healing process is very slow and put at risk every time I need to put my hands in my pockets. No jokes please!!!

I still, of course, have my bronchiectasis – permanent lung scarring – and those two nasty bugs, pseudomonas (bacterial) and aspergillus (fungal) that have made their homes in my lungs. So part of my daily medication is to keep them suppressed, while my physio is intended to prevent them having collections of gunge in which to breed more bugs. On the advice of the chest consultant Dr Mark Jackson, my anti-bacterial medication was changed in late April from Ciprofloxacin tablets to another anti-biotic, Colomycin, which I have to take twice daily by inhalation through a nebuliser. This required my being supplied with a mains-electric portable nebuliser machine to go with it. Nothing of course goes smoothly in this world and I had teething troubles with my rather clumsy technique. It turned out I was breathing too vigorously!

I do my lung physio-therapy, twice a day. If I go to work in London for the day, I can only manage it once - in the evening. However, of their own volition, my lungs start to bring up gunge – the medical term is “expectorate” – around 11am each day! As you might imagine this can be a bit anti-social! My physio has been working well – I have been doing it since last December - and is generally very productive. “Better out that in” – as they say. I have also found it easier if I have my 5 minutes of hot vapours beforehand, even though that was not the intention. The one downside to the physio regime is that the necessary coughing involved is knackering. It is worse in hot weather as I usually end up covered in sweat, which was the case every day in France recently.

My various medical exploits didn’t end there. I have been living with a damaged cartilage in my foot for over six years and eventually, in June, had an injection in the joint in an effort to relieve, what has been, a long lasting but intermittent discomfort and pain. This turned out to be quite a big affair with myself and the surgeon surrounded by a team of medics and loads of technical equipment as I lay on the operating table. However it was all put into perspective beforehand when the surgeon made sure he would be working on the correct foot by drawing an arrow in black felt-tip pen on my left shin pointing downwards!! Although I was expecting to have a hydro-cortisone injection, because of possible complications with my CLL condition, it was decided that I should have anaesthetic instead. Apparently, it would just as effective but without the risk of subsequent infection. It also turned out to be a whole day affair, caused by poor scheduling by the hospital. I was there at 10.45pm, with no food after midnight and no liquids from 7am, but did not have my procedure until gone 5pm and no one bothered to tell me what was happening - I had to do all the chasing. I was furious and gave my feedback to the surgeon, the ward manager and the unit manager – and they all blamed each other! I am still unsure if the injection has made any difference, but time will tell.

So despite a seemingly uneventful few months, there has been plenty going on for me health-wise. In fact, in the two weeks starting 2nd June I had no less than seven clinic - or similar – appointments, one of which was all day and one all afternoon. At the same time I was trying to do three days a week at my job!

My daily medication regime is - and has been for some months - as follows:
- Voraconozole (anti-fungal) and Phenoxymethylpenicillin (anti-biotic) tablets - one of each - an hour before breakfast and dinner;
- Aciclovir (anti-viral) one three time daily;
- Omeprozole capsule (stomach anti-acid) once daily;
- Garlic pearl (stomach easer) twice daily;
- Colomycin nebuliser (twice daily – and this includes making up the solution and washing and thoroughly drying the kit after each usage!)
- Inhalation of hot water vapours for five minutes twice daily;
- Nasonex nasal spray once daily;
- Doublebase gel on my scalp at least once daily - to keep my skin from drying up;
- Lung physiotherapy at least once daily – but preferably twice.

Added to that I go to Brighton for Vigam and Pentamidine every 4 weeks, but we have not yet found a way of getting these to occur on the same days! Infusing Vigam – an immunoglobulin solution to boost elements in my neutrophils - is a 4 hour procedure and the day unit nurses, despite their experience and great care, still have difficulties finding a good vein to canulate me. On one occasion it was only successful on the fifth rather painful attempt! I have my Pentamidine, by nebuliser, in the Elton John Unit at Brighton and this takes about an hour.

You can imagine I had quite a load of medication and equipment to take with me when we went away for two weeks to France. Well, in all the fervour I forgot to pack the Voraconozole tablets.! So Matthew had to ship them out to me in the Vendee via UPS - at a cost of £60. I would not have bought them in France as they are £1800 for a month’s supply. That's £23,400 per year!

With all this going on I am amazed that I have been able to keep a high level of activity with my job. The project I have been asked to do is very interesting, engaging and stimulating – so that has helped greatly. Getting out of the house by 8am to get up to London once or twice a week – and maybe more in the near future – has been quite a challenge. One real positive to come out of getting back to work has been that my physical strength has improved immensely, compared with how I felt back in March and earlier. It is only with that improvement that I realised just how much last year had taken out of me. The other real positive has been the warm welcome back I received from the Safer Neighbourhoods team. It was really fantastic and made me feel great inside. I could not have asked for more!

Apart from breaks away to La Gomera, Milan and Honfleur, plus the holiday in France we were on in late July, other main events of the last four months have been focussed around things to do with the house. We had to have a complete house re-wire, which took place from 28th April for a week. Beforehand that entailed a total emptying of the loft, with grateful thanks to Paul Wehrle, as I could not get up in all that dust with the state of my lungs – let alone the exertion involved. I was knackered at the end of it and all I did was stack things in the garage with Tina doing all the running up and down stairs! Of course we discovered that half the loft contents were Anna’s, not ours at all. As I type, there are still quite a few of her things in the garage – and everything must go! Nothing goes back in the loft!

We also had to clear as much out of the house as possible to give the electricians access to floor boards and corners – and to ensure all the contents did not get full of dust. We were assured the house would get very dusty and that we should vacate while the work was being done. Fortunately our near neighbours, Jim and Cath let us have use of their house while they were away on holiday – conveniently at exactly the same time!

However, no more than three hours into day no. 1 of the post re-wire clear up – 6th May- Tina fell and badly cut her hand. The rest of the day was spent at A & E with her wound needing eight stitches. It was a very nasty injury, but in fact she was lucky in that she could have severed tendons or an artery. Of course that put paid to her week intended for clearing up the house – and she had taken a week off work specially to do it! Anna and Matthew were coming to help later in the week anyway, but their help was all the more needed now!! I am pleased to say that her hand has recovered pretty well since then, such that Tina was able to kayak 10 miles down the Dordogne last week with no ill effects – and has a photograph to prove it!

Well I think I have just about covered most things that have occurred over the past four months. If I have left out anything, especially if it is something relating to anyone reading this blog, then my apologies in advance!

Looks Like I Will be Pill Popping for Another Year

2008-03-24T10:45:00.000-07:00

Monday 18th to Sunday 23rd March 2008

I am up to London for a day’s work. I have a meeting two floors up from my office and another in the afternoon at Scotland Yard, which gets me out again. With plenty of background reading to do at home, Easter and our week in La Gomera to come, I shall not be back in the office for two weeks. In the evening we go to Worthing and meet up with Matthew and co. to see Joseph and His Amazing Technicolour Dreamcoat. It is Ella’s birthday and this is her special birthday treat. It was great, but bless her, she fell asleep half way through the second half of the show!

On Tuesday I have the Citroen serviced, do some paperwork and then go to Brighton for my Pentamidine nebuliser. As usual the taste is bitter and I cough up loads of stuff on the way home – and yet more productively with my physio once I am home. I work all day Wednesday background reading for my project, while Tina has a day out in Tunbridge Wells with cousin Jane. I get a call to tell me that my Dermatologist’s appointment is on 11th April. That is quick. I am still to hear from the ENT people about an appointment for my sinus problem! Incidentally, my sinuses seemed to have unblocked some days back and I stopped using the nose drops. However, a few days later, back it came and so I am back on the nose drops again. It seems to have regressed quite a lot – which is slightly uncomfortable and very annoying.

Thursday morning is my Brighton clinic and I see Tim Corbett. My weight is 75 kgs – no change in two weeks. It takes three attempts to get blood from me today! My blood results are good – Wbc: 3.1; Neuts: 1.6; Lymph: 1.1; Hbn: 12.9; Plt: 77. My neutrophils have stayed constant remarkably for the past four weeks without any GCSF injections being necessary - all very good news. Tim comments on my sinusitis persisting, because my immune system recovery is slow. The more detailed breakdown of my white cells indicates this and shows that and I need to remain on Ciprofloxacin (or similar), Voraconozole and monthly Pentamidine and Vigam for the time being. Tim says it could be a year before I can come off these. He has yet to get a full response from Mark Jackson on my changing over to Colomycin, which needs a nebuliser being supplied as well. I hope to hear more on that later. Apart from the usual rattles in my chest, there are no problems with my physical examination. Tim agrees that a dermatologist should look at the place on my head, albeit it is has reduced in size and appearance. He will send me a copy of his GP letter so that I have it with me when we go to La Gomera, should I need it for any adverse reason. I will take my supply of Amoxycillin with me anyway, just in case I pick up a cold. I am to see him again in three weeks.

We have Easter weekend away at Linda’s in Leicestershire and we leave after breakfast on Good Friday morning and have a really enjoyable time. On Saturday Tina, Linda and Anita go shopping to Nottingham, while Bob, Paul, Tom and I go to the pub. I later find out that three pints of Pedigree at lunchtime is just a little too much for me in my slightly dodgy state of health. I am a little subdued for the rest of the day! We wake on Easter Sunday to a carpeting of snow, but it is gone by late morning. We have a good circular walk along the towpath to Shackerstone and back – about two and a half miles - with a stop for refreshment in the village. This is followed by plenty of lung evacuation physio! My sinuses are still playing up. We drive home on Monday morning and the day turns into a clear bright afternoon but still with a wintry feel about it. Can’t wait to fly off on Wednesday for a week of sun, rest and recuperation.

Back to Work – Week Two

2008-03-20T09:34:00.000-07:00

Monday 10th to Sunday 16th March 2008

I spend Monday at home doing odds and ends. I do a couple of hours work reading documents relating to my project. I am already feeling rather full stomached - or is that my stomach is shrinking again? - after only two days without Omeprazole, so I resume my tablet in the evening. It was worth trying, if only to see that I still need it!

I am up to the office on Tuesday. Martin has generously increased my daily fee and has had a contract drawn up. I get hold of some more background information for my project and go over to the offices on the Embankment to sign my contract. So here is a little more exercise for me, but I am tired in the evening. I am at home again on Wednesday. I do some sorting out reference my resuming self employment, including talking to Graham Hole over my likely tax and national insurance needs – very timely as it is budget day! I have two very productive lung physio sessions. I guess there is no end to this!

I work from home on Thursday but go to the doctor as I have a troublesome place on my head which has been there for about two years. It started off as dry skin, but has gone on to be irritating and occasionally sore and scabby. It has become a larger scabby place in the last few days and I didn’t want to wait another week until I say Tim Corbett. I am reassured that it is non-problematic sun damage. I get a referral to a dermatologist at Brighton and some anti-biotic Bactroban ointment to ensure any potential infection is dealt with.

I go to the office on Friday. I have a big coughing-up session about 11.30am, but I am able to find somewhere quiet for it, fortunately. Otherwise it is an uneventful day and evening, although I have to do my physio when I get home. I am very pleased with my first two week’s back at work and I think that I can manage whatever comes as long as I know my limitations.

Saturday is a relaxing day in preparation for Ella’s 7th birthday fancy dress party this evening down at Worthing. We go as cowboy and cowgirl - complete with hats! It is the usual children’s birthday chaos with Charrise doing a great job keeping everyone entertained and in order. Matthew and co. come to us for Sunday lunch and afters. It is a lousy day, so we don’t venture out. I do an hour of physio in the late afternoon. It is quite difficult and I am also tired. I fall asleep twice, hence half and hour becomes one hour! The nasty place on my head seems to be easing with the regular use of the ointment.

I Get Back to Work after 14 Months

2008-03-12T09:19:00.000-07:00

Monday 3rd to Sunday 9th March 2008

After living with my sinusitis for over four weeks, at last I have a CT scan on my sinuses on Monday afternoon. I am told that a scan result will be with my consultant for my Thursday clinic. I do a bit more clearing of the garage.

I go up to Earls Court on Tuesday for my first working day for 14 months and to discuss a contract and what Martin and Steve want me to do. I take the 8.26am train, getting to the office at 9.45am. Just right for me, except that I have to catch the school bus from here! I have an hour or so in the office chatting with the old team before Martin and Steve arrive. All seven of that main team are in and make me very welcome. I am made even more welcome by Steve and Martin. It is great to be back, but even nicer is the warmth of that welcome from the top duo. Almost brought a tear to the eye! Martin has an interesting project for me looking into consultation arrangements across London. I don’t have the complete specification today but it looks like six months’ work to me. My plan is to take early opportunities to get out and about and see how I cope with walking the streets of London, climbing up and down tube station stairs and generally exercising myself as I predict quite a bit of my future working life this year will be. I am free for the afternoon, so I test out my stamina straight away, by travelling across to Holborn to meet up with an old analyst contact from my 2006 project. It is a very worthwhile visit in all respects. I walk a total of about two miles, some of it unnecessary as I go to the wrong station for my train home. It is quite exerting and I cough up a load of gunge sitting on the platform at St Pancras, but I consider that I passed the test. I catch a bus home from the station and get home at 7pm. Quite a day!

On Wednesday I finish sorting out the garage contents and take a load of rubbish to the tip. I leave a message on Pete Korell’s blog, including asking him to email me if he has time.

I have a morning clinic at Brighton on Thursday and see Sangeeta. My CT scan shows that the right drainage hole is still blocked, but I have to say that it is feeling slightly better. Carry on with the nasal drops. She tells me that I have an appointment with the ENT team in the pipeline for sometime soon. My blood results today are - Wbc: 3.3; Neuts: 1.7; Lymph: 1.2; Hbn: 13.3; Plt: 96. I do not need a GCSF injection and can wait for the next clinic in two weeks to see how the neutrophils progress. I am to continue with the Pentamidine nebuliser, which I am scheduled to have in two weeks time. I then go to Staplefield for lunch with another former work colleague Dave Scales. We go back to 1976 in the Burgess Hill CID, when he was my boss, but we haven’t seen each other since May 1997. It’s really great to meet again and we do an immense amount of catching up.

I have another day in London on Friday, getting up early to catch the 7.19 train. The team has organised a national conference of Neighbourhood Policing and I have a sitting and listening day. It is very relaxing and I make a couple of useful contacts for my impending project! I even have a chat with Tim Godwin who comes in the do the closing speech - yet another blinder of course! He is delighted that I am back. We babysit for Matthew and Charrise in the evening, including my driving them to and from their friends. Today is another test for me, as not only do I have a day in London, but I drive a total of 76 miles, half of which is after midnight and an hour or so dozing on the settee!

We have Tony and Pam visit us for the weekend. We meet up at the Royal Oak for lunch on Saturday and have a leisurely rest of the day with plenty of chatting. We have an energetic walk on Sunday morning up at Wakehurst Place. It isn’t that we walk very far, but the first half is mainly downhill and so the second half is mostly uphill - and very steep at that! Another test for my dodgy lungs! My stomach has seemed to be well back to normal for the past two months, so I decide to stop taking my daily Omeprazole tablet ands see what happens. For the first time in my living memory there is only one club from the top flight - Portsmouth - in the semi-finals of the FA Cup. The others are West Bromwich, Cardiff and Barnsley - who beat Liverpool and Chelsea in their last two ties.

A Week in the Garage and some Movement with the Sinusitis

2008-03-03T13:30:00.000-08:00

Monday 25th February to Sunday 2nd March 2008

The initial plan to get up to London to discuss my return to work with Martin has to be put off for a week, so the main theme this week is clearing out the garage! It has been used as a store for convenience and a most annoying collection of rubbishy items for well over a year. Time for a “Spring” clean. Of course I have to be careful about damaging or cutting my hands and overdoing things with my energy levels still below par. But I bang my head on the garage door instead and need a plaster on it for the rest of the week! Anyway I do a steady two hours on Monday, Tuesday and Thursday mornings, after a short walk out and my lung clearing physio. On Tuesday evening I get a call from Tim Godwin. He says he wants me back at work on Monday! Ha, ha - just a small matter of a contract is needed, but a great motivation nonetheless. I get another nice message on my blog from Pete Korell in Wisconsin. He is about to see a consultant in Wilwaukee on the prospect of a transplant, but first had to negotiate permission with his insurance company. Not the best thing to have to do when you are ill as well! We don’t realise how lucky we are in the UK until we hear these stories. Anyway Pete, hope you get all the right answers and you are able to go through to your transplant.

Tina and I do two fast trips to the local tip on Wednesday morning with all the stuff I have rooted out of the garage. Then I see Richard Cook, my GP, about my sinusitis. This has been with me for very nearly four weeks and I am getting fed up with it! The nose spray we bought from the chemist has not made any effect. He prescribes me some Mometasone, a steroid based spray and some more antibiotics, this time Doxycycline for seven days. We go to cinema for the first time for about 18 months, if not longer, to see Oscar winning Daniel Day-Lewis in “There will be Blood” - superb. Whilst garage clearing on Thursday morning and doing some essential nose blowing, my left ear pops for the first time since in these past four weeks. At last! In fact it happens three times. Just goes to show what the proper medication can do in just two days!

On Friday I have my Day Unit appointment for my monthly Vigam immunoglobulin infusion plus a blood test. It is another four hour session. My blood results today are - Wbc: 3.9; Neut: 2.5; Lymph: 0.9; Hbn: 12.5; Plt: 104; and CRP: 16 - so I don’t have to take home any GCSF, but the CRP shows that I still have infection in me. My weight today is 74.7kgs - up slightly from last Friday. It is worth recording that my current daily medications are anti-viral, anti-fungal and anti-biotic, namely Aciclovir 200mg 3 times daily, Voriconozole 200mg twice daily and Ciprofloxacin 500mg twice daily. Additionally I have Omeprazole 20mg once daily and a garlic pearl twice daily for my stomach. Then it is Vigam and Pentamidine once monthly.

We have dinner at Val and Michel’s on Friday evening, meet up with Lu and Roger for lunch at the Royal Oak on Saturday and a fillet steak dinner at home that evening. Sunday being Mothers’ Day, we go down to Matthew’s for lunch of a superb Jamie Oliver Italian leg of lamb - absolutely delicious! Matthew and I take Ella and Mia on their bicycles to the local park on a fairly chilly afternoon. It certainly blows the cobwebs out of my lungs! Needless to say I get home for a big lung evacuation session. I am certainly getting plenty out from in there lately. Better out than in as they say. My sinusitis is still very much with me, well over four weeks since it started, but I am feeling a few movements from the congestion up there, so the medicine must be working.

Good News - I Can Go Back to Work

2008-02-26T10:40:00.000-08:00

Friday 22nd February 2008

We are away at 9am on Friday for my appointment with Steve Devereux at Kings. It is school half term this week and we get to our parking place in 65 minutes - a record! We bump into Ron and Linda Chamberlain in the coffee shop area. By coincidence Linda has an appointment this morning as well. Ron says Cobham is still not the same since Eve died. We meet Steve Devereux’s secretary, Judith, as arranged over the telephone. I wanted to meet face to face with her as she has always been really helpful over the phone. She is delightful. We also have a chat with Andre Jansen, the transplant co-ordinator. He is sorry that my transplant cannot go ahead but he offers us to call him anytime we need someone to talk to. Isn’t that great. We see Steve Devereux, who is pleased with how things are going for me, putting aside the loss of the transplant. He explains that I will not be eligible for the Revlimid clinical trial as it will not focus on patients who have already been treated with CamPred. However he is hoping that he will be able to negotiate an arrangement with a drug company. He is of the opinion that Revlimid is appropriate for me as a maintenance treatment with the expectation that it would be able to extend the remission period I get from Campath. He would not wish to have to use it is a further treatment once my condition has regressed - whenever that might be. Revlimid is not immune suppressive, on the contrary, if anything, it does the reverse. It comes in tablet form and would not interfere with my normal daily / weekly regime. He feels that time is not particularly pressing and hopes to update me next time we meet. We discuss Mark Jackson’s report and I say how helpful it was for me, enabling me to put a proper perspective on the state of my lungs. Can I go back to work? Yes! I tell him that Omeprazole was a three day miracle cure for my eating disorder, giving me a very enjoyable Christmas lunch. On the state of the congestion in my head, he tells me that I have sinusitis and explains how that has come about. I need nasal drops to help clear the sinus drain holes. However he forgets to give me a prescription! So we buy a nasal spray at the village chemist - hopefully it will be good enough. My weight today is 74.5 kgs, which is up by over a kilo from three weeks ago. I am to see Steve Devereux again in two months.

I Definitely Feel On The Up

2008-02-26T10:30:00.000-08:00

Monday 18th to Sunday 24th February 2008

I get my copy of Mark Jackson’s letter following the consultation with him last Tuesday in his chest clinic. It underlines all the points he made to me. I then get in touch with Steve Devereux’s secretary, Judith, at Kings and she gives me an appointment with him for Friday morning - which is great. I want to see if he will give me clearance to go back to work as well and this will enable me to move quickly if he says yes - which I am hopeful he will. We have been thinking we deserve another trip to La Gomera, what with everything we have been going through. I fix a week from the Wednesday immediately following Easter.

On Tuesday I meet up with old colleague Chris Pascoe for lunch in Lewes. We chat over latest happenings for both of us. I then have my Pentamidine nebuliser in the Elton John Unit, at Brighton courtesy of Abbie. What with my nasal / sinus trouble, I am quite woozy afterwards and have a sit down for a while before leaving. I am already coughing up loads of stuff on the drive home and when I get home my lung evacuation is 250% more than usual. This is the power of the nebuliser, even though it is not its intended outcome! I feel a bit unwell for the rest of the day. I am sure Pentamidine is good for me, but it sure doesn’t make me feel good!

Next day Tina and I do a two mile fast walk to get the blood circulating and I feel good afterwards. I receive a Google Alert from the MedicalNewsToday website about Campath and its potential usage for earlier CLL intervention where fludarabine is not appropriate. A clinical trial compared Campath with Chlorabucil in previously untreated patients with B-cell CLL. What draws my attention, however, is the higher overall response rates and the mention of a median “remission” period of two years. Interesting.

I am back to the RSCH on Thursday morning for a clinic with Tim Corbett. My blood results are good - Wbc: 3.7; Neuts: 1.9; Lymph: 1.2; Hbn: 13.4; PLT: 108. He decides that I should wait until next week’s blood test before having a next GCSF injection. He wants to get back to Mark Jackson about his recommended substitution of Colomycin for Ciprofloxacin. So I am to stay on Ciprofloxacin and Voriconozole for another month. He also wants to have a more detailed analysis of my blood results to see whether I need to continue on Pentamidine and Vigam, but to have the Vigam due for me next week anyway. He checks out my sinus / ear congestion and wants me to have a CT scan on my sinuses. Although I am having no pain from my sinuses, I still have ringing and some discomfort in my left ear and very reduced hearing from it. The right side is considerably better. It is a real bind and wish it could be sorted out. Tim agrees with Mark Jackson that it would be good for me to get back to work as long as I am aware of the potential for infections.

We have a quiet Saturday. Anna, Nick and Eva are with us until tomorrow morning, when they leave for France and Spain. I have another two mile walk in the morning, which makes me feel good. The evening is electrified by England beating France at the Stade de France - a repeat of the World Cup semi-final. We have Sunday lunch at Matthew’s. I feel rather tired through the afternoon, so we come home and I have a couple of hours’ sleep. This is my first afternoon snooze for nearly two weeks. However after my lung evacuation physio on a couple of afternoons this week I have felt so knackered that I have laid on the bed to relax afterwards and dozed off for 15 minutes or so. Under the circumstances I think that is forgivable.

Never Underestimate the Power of Positive Thinking

2008-02-18T08:49:00.000-08:00

Monday 11th to Sunday 17th February 2008

I have another quiet Monday with a surprise phone call from Cliff Holman. We go back over 40 years to initial police training and he had been in touch before Christmas when he had heard of my predicament of last year. It is really good to get calls like this. It does wonders for my morale. My friend Colin also rings me. He has been out of hospital a week now and is feeling a lot better, even managing a walk to the village yesterday - about a half mile each way. That is really good news.

Tuesday is a big day and I have given it a section of its own. We have lunch at Jeremy’s with Keith and Wendy on Wednesday - superb as ever. Keith has to start six weeks + daily radiotherapy treatment next week and they are moving house on the Wednesday as well. We hope all goes well. Yet more 40+ year old friends. Buoyed up by the good news from Dr Mark Jackson, I resolve to start getting myself a bit fitter, so I have my first leg stretching walk on

Thursday. I do just short of two miles on a bright, but cold, day, with a nasty east wind. I feel better for it, but wake up in the night with cramp in the lower shin and then in my feet. Aaaagh! Linda and Paul come down today for the weekend. I have decided to go up to the Princess Royal Hospital at Haywards Heath for the blood tests I have on the weeks I do not go to the clinic at Brighton. If I time it right the wait in the bloods room is so much shorter. So in the morning I have my check and call the Day Unit for the results later on. They are - Wbc: 4.2; Neut: 2.4; Lymph: 1.3; Hbn: 12.6; and PLT: 113. I am surprised that my neutrophils are as high as 2.4, since my last GCSF was seven days ago. I will hold on for my GCSF for a few days. This could be promising for the eventual return to some kind of “normality” in my immune system.

All four of us set off about 7.15am on Friday for a day trip to Calais. I have a neck and shoulder massage during the crossing! We eat well at Le Detroit as usual and then do a big shop at Sainsbury and Auchan. The day goes very well. We have a mooching around kind of Saturday with a pub lunch at the Royal Oak. I have also resolved to stop the afternoon sleep sessions I have been used to these past few months. If I am going back to work, it’s no good wanting to have a kip all afternoon! Thinking my breathlessness and tiredness was due to my Bronchiectasis and that it would be a feature of my life from here on, I had allowed myself to get into a bit of a rut. I have not had an afternoon sleep since Tuesday! It’s all mind over matter. Never underestimate the power of positive thinking! I should have remembered - after all it is my motto!

We have a quiet Sunday, including a brisk two mile walk and I give myself my GCSF injection. Anna, Nick and Eva arrive late evening from Mull. They are having a couple of weeks or so break driving down through France and into Spain. I still have my “head cold” or whatever it is, with my head full of catarrh, a buzzing in my ears and reduced hearing especially in the left ear. This has now been going on for over two weeks. I am in no discomfort except for the buzzing and the poor hearing. However I still have the sensitive skin issue that started back in October and I am still using Doublebase daily to ease the itchiness I feel on my head, neck, shoulders and waist areas. Needless to say I am still successfully evacuating lots of gunge from my lungs every day.

A Big Day - an Appointment with the Chest Consultant

2008-02-14T08:11:00.000-08:00

Tuesday 12th February 2008

Tina and I go down to Brighton General Hospital for a 4.10pm appointment with Dr Mark Jackson, the chest consultant. I had spoken with him briefly back in November when I had my bronchoscopy and liked him.. He turned out to be even better than that! We had not even 0.1% hope or expectation that he would disagree with Steve Devereux about the risks involved with going into a stem cell transplant. Therefore there was less likelihood of our being disappointed with what he had to tell us. In fact it turns out to be informative, helpful and positive in lots of ways. Firstly, his opinion is to strongly advise against the transplant as the risk would be too great, although not quantifiable in any percentage terms. His main concern, over and above the risk of Pseudomonas, is that I would get a recurrence of the fungal infection, Aspergillus, which could set up a fatal septicaemia. We discuss the history of my Bronchiectasis, with the thinking that it could have started as long as five years ago or so, when I had a persistent chesty cough some months before my initial CLL diagnosis. The Pseudomonas would definitely have come along much later, taking advantage of my low immune system and the condition of my lungs.

Not surprisingly, he finds a load of crackles in my chest. He also identifies that I have classic Brochiectasis finger nails - which is called “clubbing“. Apparently they run level with the backs of my fingers instead of there being a dip at the quick. I could not see what he means, but he makes a point of showing the feature to the three student doctors who are sitting-in on the consultation. He has of course courteously asked me if I minded them seeing me stripped to waist - they were all young ladies! I say that I am sure they had all seen a pigeon chest before!

He tells me that whilst my Bronchiectasis could get worse, the daily lung clearing physiotherapy and keeping a watchful eye for possible infection, are the right things to do to keep on top of it. The more I allow secretions to accumulate, the greater risk that they might become infectious. But I must live with the Bronchiectasis for the rest of my life and therefore live with the need for daily lung evacuation. He says it a good idea to have a few phials at home, should a sample be needed. He will also recommend to the Haemotology Team that I come off Ciprofloxacin and go on to Colomycin by nebuliser. The reason for this is that Ciprofloxacin is more appropriate as a treatment medication, with Colomycin as a prophylactic. Should I get an infection, it could then be treated with Ciprofloxacin, otherwise the only treatment available would be hospitalised intra-venous anti-biotics. Another piece of better news is that my latent Pseudomonas and Aspergillus are not infectious to other people, so I will now be able to take Communion wine. I ask him whether the Bronchiectasis is the cause of my daily tiredness or the breathlessness I experience when walking up hill. Not so! I have lost no lung capacity and my blood/oxygen levels are very good. My tiredness and breathlessness is more likely the result of my past year’s treatment, which will have taken an awful lot out of me.

The last piece of news is the icing on the cake, as I tentatively ask his opinion about my going back to some part-time work. I explain what this would entail and his response is that he thinks it would be very good for me, as it would help me build up my strength. Wow! That is so much better than I expected. I will of course check this out with Steve Devereux when I next see him at Kings, but it gives me such a lift. Tina and I leave really encouraged by everything he said. He will send me a copy of his letter to the Haemotology Team.

A Head Full of Stuff and a Week of Food

2008-02-12T05:16:00.000-08:00

Monday 4th to Sunday 10th February 2008

During this week I have had a very interesting comment on my blog from Pete Korell of Wisconsin USA. Pete, firstly, I hope you had good news about your impending transplant. Yes, I would very much like to read your blog, so please can you post your details next time you view this. Do you have similar problems to me - a protein 53 defect with 17p and 11q deletions? I would also be interested to see if our age and health profiles are similar.

I have a quiet Monday at home, brightened by a call from Martin Stevens, asking how things are for me. He had been stunned to get the news of my transplant cancellation and again told me that as and when I was up to it, there was work for me to do with his team. Just what I wanted to hear! My head cold - or whatever it is - has continued right through the weekend. I have some suspiciously bright yellow catarrh coming from the nasal area, my head feels like it is full of cotton wool and I cannot hear very well. Apart from that I have no temperature and do not feel unwell, but I guess I have an infection there of some sort. I will see the team at Brighton tomorrow about it.

I go down to the RSCH on Tuesday for my Pentamidine nebuliser at 10am. I get a real soaking walking from the car to the Elton John Unit thanks to driving rain off the seafront. Then I am told that, due to sickness, the session has had to be cancelled. I go up to the Day Unit to have my head checked out. I have blood and nasal samples taken and am later seen by Sangeeta. I have an upper respiratory tract infection and am prescribed the anti-biotic Augmentin for seven days. As I am leaving the hospital I bump into an old work colleague, Brian Cartmell. We go right back to my first policing days in the late 60s! Unfortunately Vi has broken her wrist in a fall and is being treated here today.

We get a big surprise on Wednesday with a visit from John Mason, my best man from 40 years ago(!). We had lost touch over the past ten years or more, other than through Christmas cards, but Tina had put a note on our last card and John responded. We had lunch out courtesy of John. He has all but retired from his chiropody and lower limb surgery work after a 40 year career. It was really good to see him.

I am down to the RSCH again on Thursday for the morning outpatients clinic and am seen by Tim Corbett. My blood results today are - Wbc: 4.1; Neuts: 1.9; Lymph: 1.7; Hbn: 12.6; and PLT: 103. So I give myself a GCSF injection in the afternoon. As the fungal infection issue from last October / November has now settled, Tim is going to take me off Voraconozole and put me back on Itroconozole - as I now only need a prophylactic rather than a “treatment” medication. Deep joy - I don’t think! I am to have weekly blood tests and fortnightly outpatient clinic attendances from now on. We have supper and cards with Cath and Jim. Great fun!

This is turning out to be a week of much feeding - and the weather has changed to clear skies. Tina walks to work yet again on a bright sunny Friday morning. I am taken out for lunch by Simone and Ian, my old team from my last year at Lewes. It is really good to hear their latest news. In the evening we go down to Worthing for dinner out with Matthew and Charrise, to celebrate Charisse’s birthday of yesterday. A superb restaurant - called Food - and a very good meal. With two meals inside me today, I am fit to burst! It proves that I haven’t quite got all my appetite back yet!

I spend Saturday at home. It is a shame not be able to get out for a good walk in this lovely Spring-like weather, but I am still finding it quite hard just walking up the road to get my newspaper. I am still doing my lung clearing exercises once or twice daily and having an hour or more sleep most afternoons. We have Sarah and Paul over for dinner in the evening and I am not to bed until 1am - remarkable! We go to 10.30am Mass on Sunday and have Lynn Ross for lunch.

Another Quiet Week - I Get my Chest Consultant Appointment

2008-02-04T07:56:00.000-08:00

Monday 28th January to Sunday 3rd February 2008

I take Pauline to see Colin Dunbar in hospital at the PRH. Poor Colin has been in for over two weeks and we only heard on Friday. I think he enjoyed the visit and gets out soon. I am down to Brighton again on Tuesday for a blood test, which shows that my counts are holding up well - Wbc: 5.3; Neuts: 3.5; Lymph 1.1; Hbn: 11.8; PLT: 118. So I hold back on the GCSF until my Friday blood test. I get my chest consultant appointment by letter today for two week’s time. This is good as I really want to know as soon as possible whether there is any - even forlorn - hope of the possibility of my lungs being up to the bone marrow transplant at any time in the future. Alternatively I want to know what I can do to make life at least reasonably bearable given the current state of my lungs. I even want to check out what chance I could get back to work on a two / three day per week basis, or if travelling to London is not a runner. I need to get a fresh sickness note from my GP. In the absence of Richard Cook, a colleague gives me one for three months. This makes sense as I am in the throes of being less CLL and more Bronchiectasis plus there is the possibility that I might be able to get back to work around April time.

Tina is off on Wednesday. We have a visit from Jane and Richard and we have lunch at the New Inn with them. I really enjoy my lamb - plus two pints of Harveys! I am definitely back on track with my taste buds and appetite. Incidentally I am having a can of Old Speckled Hen each evening, except when I have already had a midday beer. I am hoping this will help with my efforts to put on a bit more weight and supplement my fried breakfasts and porridge. I am sure it all helps. We have decided that we will go on the pilgrimage to Lourdes that is being organised jointly for later this year by our parish priest and the priest from the East Worthing parish - where Matthew lives.

On Friday I go down to the RSCH for a three hour session with Vigam - my monthly immunoglobulin infusion. My blood test results today are - Neuts: 2.2; Hbn: 12.5; PLT: 123; and I have a CRP reading of 23 - the first CRP reading for ages. I am not surprised as I have had quite a bit of catarrh in the head since yesterday. I will see how things go. Despite all my diligent eating and drinking my weight today is 73.2 kgs. This is a kilo less than when I came back from our week on La Gomera. My GCSF injection today is the first since last Friday. So it looks as though this is dropping back to being a weekly necessity, rather than every three or four days.

I have a survey and estimate for loft and cavity wall insulation from the company linked to the offer from our District Council. It is a good deal but there will be the additional expence of having our loft floor raised if we want to continue using it - which we do. Add to that the electric rewiring we need and we will be making some considerable investments into our home during the first half of this year. But we will be safer, warmer and saving energy bills in the long run. A few months after stopping work last January, I applied for Incapacity Benefit, having been advised by the Job Centre Plus contacts that I would qualify. Well I soon found out that I didn’t, although I was no longer required to pay the £9 or so monthly stamp with the Department of Work and Pensions covering this for me. I recently received a 20 page detailed questionnaire about my “Incapacity”. Not really wanting to fill it in, I spoke to a helpful person at the regional office, with the result that I am going to ignore it at least for the time being.

We have the weekend away at Pam and Tony’s in Thanet and as ever thoroughly enjoy ourselves. We get there about 4pm, have lots of chats, enjoy a few drinks and have a superb confit of duck - homemade by Tony. He is such a good cook. Tina goes to the Minster “Minster” on Sunday morning but finds there is no Mass and a quick visit to Minnis Bay is very cold and windy. We go to the Dove at Dargate for an excellent lunch and bid our farewells there, having talked about getting away for a few days in the May half term week to Honfleur. At the risk of repeating myself too many times, my week still features my daily or twice daily lung clearing physio, plus an hour or so sleep.

A Quiet Week - My Chest Stitches are Taken Out

2008-02-02T05:05:00.000-08:00

Monday 21st to Sunday 27th January 2008

I have a Monday afternoon clinic appointment at the RSCH, mainly for a check on the Hickman line site, and am seen by Vicky Tindell. There are no problems with the repair to the site and the stitches are due out on Thursday. Surprisingly my neutrophils are high, at 8.6, with the other counts as - Wbc: 11.8; Hbn: 11.8; and PLT: 120. It is decided that I should now start coming to the Thursday morning outpatients clinic on a weekly basis starting 7th February.

We have lunch at the Royal Oak at Wineham on Wednesday to discover that the well over 50 year Peacock family tenancy has come to an end. Tim bowed out in late November and a young couple has taken over, but are changing nothing! We meet Tim as we are leaving and he greets us as long lost friends. Tina even gets a kiss! I cannot wait to tell Mike Pont down in deepest France.

I am back to the Day Unit on Thursday to have my stitches out. They come out with ease. I am left with a small stab wound type of scar. Tina likes to liken it to a duelling scar! There is also still an amount of bruising from the removal procedure, but otherwise everything there is ok. My neutrophils are back to normal this time. My blood counts are - Wbc: 4.5; Neuts: 2.9; Lymph: 1.1; Hbn: 11.8; and PLT: 118. I do a bit of shopping in town before my appointment - a camera case and two long-wanted books. I keep my walking to a minimum as I am still conscious of my coughing, or having something in my lungs that may want to get out (!). I also have a persistent sense of a “taste” of the gunge in my lungs coming up to the back of my throat. It is quite off-putting.

I see that my recent correspondent, John Clark, has answered the question I asked of him on my blog. He found me through the CLL Google Alert he subscribes to. Although I have used Google Alerts for work related things, I had not thought of it in respect of my CLL and learning more. Thank you John. I am pleased to hear that your treatment is going well. Incidentally if you or anyone else would like to make more direct contact with me or other CLL patients, the CLL Support Association may assist via email. Their website has a section titled “Patients Stories”, where my entry indicates that contact can be made through the association.

I hear from the Radio 4 programme “The Material World” of an interesting development involving the taking of garlic (pearls) in the treatment of cystic fibrosis for children. A doctor in Nottingham (I believe) is to run a clinical trial with it. The similarity - in some respects - between cystic fibrosis and bronchiectasis suggests to me that perhaps garlic pearls may help me, so I am starting taking two a day. I look up a couple of items on the internet to find that Norwegian experiments on mice two years ago had shown the potential of garlic, but the equivalent dosage for an average adult was 50 bulbs per day! I must ask Dr Jackson what he thinks.

I am still having to clear my lungs at least once per day. I do this on the bed. My physio method is still productive, so I guess I am doing it right. Strangely I am bringing more stuff up from my right lung than my left - another question for Dr Jackson. The physio - or more significantly the attendant coughing - is tiring and I am still having at least an hour and a half sleep most afternoons when I am not out doing something. We have Cath and Jim for supper Saturday evening and otherwise it is a quiet weekend.

A Week in the Canaries then Back to Reality

2008-01-21T10:38:00.000-08:00

Monday 7th to Sunday 20th January 2008

We have a very relaxing and enjoyable week on La Gomera from Sunday to Sunday and it is warm. There is a fair bit of cloud which stops it getting too hot and I quickly discover that I cannot take very much direct sun anyway. In fact I feel the effects of an hour’s oblique morning sun on Monday, despite sun cream, and that warns me off for the rest of the week. I am on Ciprofloxacin - the anti-biotic for my lungs - and the advice sheet warns to avoid sun. So we find terraces with plenty of shade where we sit and read, etc. I still get the benefit of “reflected” sunlight and end up looking deceptively healthy! My appetite is well and truly back and I thoroughly enjoyed the white wine - Torres Penedes Vina Sol. My taste for red wine is still problematic. I have three injections of GCSF during the week to keep my immune system up. I have several physio and coughing sessions, which are tiring but necessary. I also find that I needed an afternoon sleep most days, but that ensures that I enjoy my evening meal and the customary nightcap! We get through plenty of water with me definitely drinking well in excess two litres per day. As the week progresses I notice that the entry point for my Hickman line is becoming a bit sore.

I am back for my clinic on Monday 14th and see Ros Johnston and the team. The good news is that the bone trephine sample taken in December is clear of CLL. It is agreed that my Hickman line is past its sell-by date and must come out. I am given an appointment for Thursday. I am also given a prescription for a week of Flucloxacillin and Augmentine to head off any possible infection with the line. There does not seem to have been any contact yet from Kings about the referral I should be having to the chest consultant, so Ros will pursue this herself. I mention that I had some occasional discomfort in the kidney area while I was on holiday. I am asked to supply a urine sample to check this out and also to give another sputum sample to see whether I have any further chest infection(s). I have put on 1.6 kgs over the past ten days - great! - and my weight today is 74 kgs. My blood results are - Wbc: 5.4; Neuts: 3.8; Lymph: 1.4; Hbn: 10.6; PLT: 110. My Monday is made even better by the surprise arrival for a couple of days of Anna, Nick and Eva. I am trusted to baby-mind Eva on Tuesday morning while Anna and Nick go to a business meeting in London. It is great fun!

I have my line taken out - it is actually cut out! - by Vicky Tindell on Thursday. The local anaesthetic means that it is a completely painless procedure. Tina drives me down and back to the RSCH as I was not sure how it would go. En route I get a call from Tim Godwin asking how things are going for me. I had not previously told him the news of the cancellation of my transplant, so I give him an update. It is great to hear from him and typical that he finds time to think of me. If I am up to it, I am always welcome back. What can I say? It is a wonderful boost to my morale. I weigh in at 74.2 kgs today. Is this progress - or is it holiday food?

On Friday I receive a copy of a letter sent from Jindriska Lindsay at Kings to Paul Hill. I am rather dispirited by its content as it talks of my December CT scan showing deterioration in terms of the bronchiectasis compared with the previous. She had not told me this at the consultation, albeit we had the bad news given to us with regards the transplant. However, the letter stated that they “would definitely consider transplant if his CT chest remains stable or improves”. We were not told this either, but hope it is correct. I am still finding walking up to the village makes me breathless, I have daily physio and coughing sessions and need an hour or two sleep in the afternoons. In the context of the letter from Kings, I certainly do not feel my lungs are getting any better - far from it!

I have a quiet Saturday catching up with correspondence, things on the laptop, etc. We have an invasion on Sunday with Matthew, Charrise and the girls coming for lunch and on into the evening. It is great seeing them, but by 5pm I am feeling very tired and have two hours sleep. Matthew sorts out Tina’s iPod shuffle - their Christmas present to her - setting up her profile on the laptop and loading her iPod with a selection of music. Great stuff.

Seeing in the New Year

2008-01-04T13:36:00.000-08:00

Monday 31st December 2007 to Sunday 6th January 2008

I have been typing up my blog in the last few days, having stopped since early December and I am pleased that I will be practically up to date up to our flying off to La Gomera on Sunday. Checking back on my recent ramblings I have found a comment from another CLL sufferer, John Clark from London. It is very heartening to think that someone who doesn’t know me has found their way to my blog. I never seem to be able to find it when I go Googling! John, if you read this, I would appreciate your thoughts on whether any of it is in any way helpful to you, bearing in mind the nature of your condition may be different to mine. It would also be interesting to know how you found my blog. Many thanks in anticipation.

I go to Brighton for a blood test at the phlebotomy unit on Monday, while Tina, Linda and Paul do some sales shopping in town. We meet up for a lunch time drink at the very nice Terraces Bar and Grill on Marine Parade. Champagne for the ladies - what else! - and a macchiato for me. We have fillet steaks for our New Year’s Eve dinner, play canasta and celebrate midnight with a Frisbee throwing competition down the road using the Nigel Slater chocolate and cream sachertorte, which had turned out brick hard instead of soft and inviting! My blood results today are: - Wbc: 4.1; Neuts: 2.2; Hbn: 10.8; and PLT: 113.

We have a quiet New Year’s Day , Linda and Paul leaving after breakfast. By the way I am back to porridge for breakfast but now I no longer feel full right up to mid afternoon as I did before. The change in my stomach size seems to be permanent. It is an enormous morale booster. Wednesday is another quiet day. I am having long coughing sessions these past two days, probably because I resisted it whilst our guests were here. I have to say it is a very anti-social necessity - and very exhausting. Despite that I get down to sending a “health update” email to those family and friends - including former work colleagues - who have not heard of my recent change of fate. Although I have already recorded my thoughts in my blog, this is still quite cathartic. The replies I receive are full of encouragement as well as sympathy for the downturn in events.

I go down to the Day Unit on Thursday for a blood test, line care and a lengthy infusion of immunoglobulin - over three hours - which I must have every three or four weeks. The idea of the immunoglobulin (trade name Vigam) is to get rid of unhelpful and potentially disruptive micro cells in my bone marrow and help improve my Neutrophil count. Perhaps I will not now need GCSF so often? I am very lucky as I parked in a two hour parking bay, but stayed four hours - and didn’t get a ticket! I collect four packs of GCSF to keep me going for the next ten days. Diane also gives me a letter I must show at the airport check-in so that I am permitted to carry my GCSF syringes - complete with needles - on to the aircraft on Sunday. The possibility of their freezing in the hold would render the drug useless, so I must take it with me on the plane. My blood results today are - Wbc: 5.0; Neuts: 2.6; Lymph 1.7; Hbn: 11.0; and PLT: 110.

It is now Friday. Although I am tired during the day I have avoided the need for an hour or so sleep, mainly I think because I have managed to preoccupy myself with things. I went to Mass this morning and saw a lot of friends who asked for my latest update. There are so many lovely people about. Sheila Mitchell offers us accommodation in their house in Calpe any time we might want it while they are out there during the next three months. How nice! The fresh air catches up with me and when I get home I have a lengthy and tiring coughing session. This afternoon I collect Tina and we take Tosca (our 12 year old cat) to the vets again to see how her thyroid problem is going. She could well end up being a gold plated health problem!

We have a quiet Saturday, which includes packing for our week away. Matthew is with us at 7.30am on Sunday to take us to Gatwick for our flight to Tenerife and on to La Gomera. It is warm there and a complete contrast from England. We are looking forward to a good week.

A Low Key Christmas

2008-01-04T13:33:00.000-08:00

Monday 24th to Sunday 30th December 2007

Monday is as downbeat as the weekend for me. I just about manage to finish the Christmas decorations but my heart isn’t really in it. My mood is worsened by the sad news of the death yesterday of the legendary Oscar Peterson. Such a consummate pianist; he played with the greats of jazz for over 50 years and was truly great himself. One of my all time favourites - as my record collection attests. We go to Christmas Eve Mass at 9pm and I am heartened by Father Tony’s homily, in which he mentions how hard a year it has been for so many people in our Parish community, through illness, bereavement, or whatever.

Because there was always uncertainty about whether I might be in hospital at Christmas, we had told Anna and Matthew to do their own things. So we have a quiet Christmas Day, just the two of us, but plenty of phone calls. Having said that we go to Sarah and Paul’s for a pre-lunch drink and lots of little sausages, etc. Incidentally my Christmas present from Sarah and Paul is a superb selection of beers! Readers may be starting to believe that I may have a little drink problem. Not so! I don’t drink spirits and my yearning for a beer extends to a pint per day - or maybe two at weekends and festive occasions. With my needing to put on a bit of weight, this is no bad thing, especially as my taste for wine is still in serous decline. We eventually sit down for our lunch of stuffed turkey breast at 5.30pm - and it was absolutely superb. Easy to cook, easy to cut and easy to eat! I suddenly discover that - wonder of wonders - my appetite has come back. I reckon it is the Omeprazole, with the possible assistance of regular spoonfuls of yogurt with my breakfast. Allelulia! It feels like the tide has turned!

We have Boxing Day lunch at Matthew and Charrise’s with three very excited granddaughters. Once again I get stuck into a super lunch of home made chicken and tarragon pie. Great cooking Matthew!

I have a full Thursday afternoon at the RSCH, firstly having a Pentamidine nebuliser, then blood samples and line care and lastly seeing Dr. Paul Hill. Thursday is his “duty day” at Brighton and I am very pleased to see him. He answers questions that had come to us following the consultation with Steve Devereux on the 21st. He tells me that I have had a very good response to the treatment, but at a cost. I have not had or needed any treatment since July, so in theory I have been in remission since then, albeit with lots of other problems! - ongoing chest infection type problems since late August for example. The length of the remission is unknown as there is insufficient history of the CamPred treatment trial to give any estimate. He acknowledges the promise in the new Revlimid treatment but his view is that they should now leave me alone and let me get my strength back. Revlimid would be probably be appropriate at whatever time my CLL returns. He does not think a transplant for me is now an option. Quote: “ we wouldn’t really want you as a statistic.” I know exactly what he means and am mentally already ahead of him.

This is not a good day as news comes through of the assassination of Benazir Bhutto, the hope of democracy and some degree of sanity in Pakistan. All hell breaks loose over there. Meanwhile all hell breaks loose in my lungs as the nebulizer has loosened up loads of stuff and I am now coughing for England! My weight today is up from last week to 72.2 kgs and my Neutrophils are 1.9, so I give myself a GCSF injection tonight as I have to keep above 2.0.

Linda and Paul come down from Leicester on Saturday to share the New Year with us. It’s great to have company but it is nonetheless a fairly quiet weekend, with lots of smoked salmon sandwiches - thank you Daphne! - and turkey pie.

Hit with a Different Sledgehammer

2008-01-03T08:40:00.000-08:00

Saturday 22nd to Sunday 23rd December 2007

I must confess to spending both days in deep gloom. After going through all that this year has thrown at me, to find that the route to potential cure is blocked off is a tough one. Despite talking things over together - as best we can - I cannot get over the shock of Friday’s news or put things into perspective. I call Daphne and Peter with my news, but do not really feel much like talking to anyone else yet. I look up Revlimid on the internet and read a very informative article by Dr. Chaya Venkat of Arizona published 30th January 2007 on the CLL Topics website. Revlimid is the brand name for Lenalidomide, a drug in the infamous Thalidomide family. It is very early days but from trials in the USA, it seems that it has some prospects for patients with p53 defects like me. I am not sure if I am heartened by the information or not. It makes comparisons with the “Sledgehammer” treatment of CamPred, which I have had, stating that neither of them is a “walk in the park” - don’t I know it! - but with unknown side effects as yet for Revlimid.

I am still needing about two hours sleep, usually in the afternoon. I am also trying to do my physio-therapy breathing exercises, however I don’t seem to be able to cough up quite so much stuff as before. Perhaps I need a nebuliser to free it up. I shall no doubt find out on Thursday when I have my Pentamidine. On the plus side I book a week in La Gomera from Sunday 6th January and we make a start on decorating the house for Christmas.

Friday 21st December 2007

The news today comes like a body blow to the solar plexus, especially after all we have been through this year. We learn from Dr. Steve Devereux that the condition of my lungs is such that the risk is too high to go for the transplant, certainly at the moment. We had seen his registrar, Dr Jindrinska Lindsay, beforehand and she had tried to prepare us for the news by mentioning the increased risk of fatality that was now present. But it doesn’t make much difference to how we eventually receive the news. The CT scans show no improvement between the one taken on 7th December - after my two weeks of chest treatment - and the previous one. My lungs have scarring and dilated alveoli, neither of which are repairable. The damage has been caused by my history of chest infections and with the intensive treatment I have had having made me more vulnerable to them. Steve Devereux puts the facts to us very carefully and sympathetically, but it doesn’t alter the sense of shock and disappointment we feel. He will refer me to a chest consultant for an opinion on whether there is any prospect, with further therapy etc., that my lungs could become stronger, but my senses tell me that the prospect of a transplant is now pretty remote. I say that I am happy to be referred to Dr. Jackson at Brighton, who saw me when I had my second bronchoscopy and who recommended my recent two week treatment plan.

Should the transplant not be the viable way forward, Dr. D mentions that a new drug is emerging on the scene, called Revlimid, which has shown some promising prospects of creating remission. A clinical trial is being put together by one of his national colleagues and he will explore the possibility of my being included in it. In the meantime I am to resume infusions of immunoglobulin on a three to four week basis. (My most recent infusion was on 24th November as an in-patient.)

We also discuss my loss of appetite and weight, which has been with me since my sickness session following the bronchoscopy in Brighton on 15th November. He suggests that I resume Omeprazole capsules as they might re-balance the workings of my stomach. Failing that being successful, they may have to have a look at my stomach with an endoscopy. I hope not! My blood results today are - Wbc: 2.99; Neuts: 1.9; Lymph: 0.7; Hbn: 10.3; and PLT: 140.

With all that bad news coming our way, we check with Dr. D if getting away to La Gomera for a week in January would be ok. “Seems like a very good idea.” was his reply. We could really do with a week of warm sun. Nonetheless we drive home very down beat. I call Anna and Matthew in the evening to pass on the bad news. This has not been a very nice Christmas present.

Monday 17th to Thursday 20th December 2008

I have an afternoon clinic appointment at the RSCH with Ros Johnston. She tells me that my second CT scan shows no change from the earlier one. At that time I do not see the significance in this. My blood results are good - Wbc: 6.2; Neuts: 4.5; Lymph: 1.1; Hbn: 10.8; and PLT: 139. My weight is down again to 71.2 kgs. I meet up with Anna and Eva for some very successful Christmas shopping on a very cold day. Thank you Anna!

I have a visit from Peter and Sue on Tuesday and we go to the Royal Oak for lunch of soup and a sandwich. It is good to see them. In true brotherly spirit Peter brings me a superb selection of beers, fully in the knowledge that I have my taste back in that department! I have been to my doctor’s surgery for repeat prescriptions as I only had two weeks’ supply on my discharge from hospital. My GP rings me to verify my need for my anti-fungal medication, Voraconozole. Apparently it is £1100 for two weeks’ supply and he has to get clearance from the Primary Care Trust. I don’t know how long I will have to have it, but I am sure getting my money’s worth!

Anna flies back to Glasgow at the crack of dawn on Thursday. I am not up to going to Gatwick that early, but have a visit from Derek O. later in the morning. We have tea and long chats. I am back to the Day Unit in the afternoon for line care and my blood test, which are good yet again - Wbc: 3.5; Neuts: 2.3; Lymph: 0.8; Hbn: 9.9; and PLT: 140. My weight today has gone up a bit to 71.4 kgs. My sleep and food patterns are no different.

A Quiet Week Recovering from Being In Dock

2008-01-03T08:38:00.000-08:00

Monday 10th to Sunday 16th December 2007

I am back to the Day Unit for a blood test on Monday afternoon to find that my Neutrophils are up to 7.5. It looks as if I do not need to have my GCSF injections quite so often. The rest of my blood results are good - Wbc: 9.4; Lymph: 1.2; Hbn: 10.5; PLT: 117. My weight today is 72.2 kgs - much as expected. My Thursday results are - Wbc: 5.5; Neuts: 3.9; Hbn: 10.4; and
PLT: 125. My weight is down to 72 kgs.

The rest of the week is pretty low key for me. I am sleeping about two hours every day and well at night. I have no great appetite and am struggling to try to fill-in between meals with Fortisips etc. We go to Carol’s in Tunbridge Wells for our customary pre-Christmas Saturday. While Tina and Carol have a day in town, I spend the day at her house as I do not want to risk my lungs out in the open on a very cold day. Regretfully I am still not able to enjoy a glass of wine, but have mugs of tea and a beer instead - very not me! On Sunday we go to Gatwick to meet Anna and Eva off their flight down from Glasgow. They are down here until Thursday. It is great to see them.

A Second Week of Treatment for my Chest

2008-01-03T08:34:00.000-08:00

Saturday 8th to Sunday 9th December 2007

An uneventful two days spent recovering from my two weeks “in dock”. Phone calls all round to keep Anna, Matthew, Daphne, Peter, family and friends up to date. My appetite is still minimal and I sleep at least two hours during the day. I am unsure how my weight is, but suspect it is down.

Friday 7th December 2007

I am nil by mouth overnight and have my bone marrow biopsy taken by Sangeeta under sedation. It makes all the difference! I come round about 11.20am for a brief discussion with Tim Corbett, the memory of which is lost in the mists of the sedation. I don’t think he said anything that I hadn’t heard before. I sleep on to 1pm and have a late lunch, followed by my CT scan. I then get myself packed and wait for Tina to collect me. I am not sure whether my two weeks of treatment have made any significant difference to the condition of my lungs. I suppose the CT scan will say it all. Have met a few more fellow patients who have helped make yet another stay in hospital bearable and amusing and I wait to hear what next.

Thursday 6th December 2007

My early morning routine is turned upside down when I don’t have my Tazocin infusion until 7.40am. Funny how institutionalised you can get in hospital. Even so I eventually get down to the shop getting papers for myself and others from my ward and the ward I was in for my birthday. Nothing like keeping the brain active! I have an enormous coughing-up session from 10am to 12midday, which leaves me exhausted. It is broken only by a visit from Dr. Sangeeta. She tells me I will be discharged tomorrow after a CT scan and a bone marrow biopsy, with Ciprofloxacin as my ongoing anti-biotic. Sr. Peter gives me Holy Communion after lunch and I then rest for a couple of hours before Tina visits. Thank goodness for my I-pod. Fortunately my lungs have decided to be quiet for the afternoon and evening. I celebrate the end of my Metronidazole-induced alcohol fast with an evening Guinness - purely for medicinal purposes of course. I do not start my late evening Tazocin and Gentamicine until 12.40am and so I don’t get to sleep until 2.20am! I finish reading Anna Politkovskaya’s “Russian Diary”. What a country and what a crooked regime!

Wednesday 5th December 2007

I am seen by Tim Corbett again today. He has had a chat with Steve Devereux about my situation and Steve’s view is to recommend going ahead with the transplant in January despite the shift in the odds. Tina visits me earlier than usual as it is her day off. I am not missing much on the weather front recently as it has been lousy outside. Sister Peter calls by briefly after lunch. I also have another visit from Rebecca, the physio. She advises that I am being a bit too enthusiastic with my breathing and coughing, hence the sore throat. I should be more gentle. The rest of the day I sleep, read and blog. My weight today is 73.4 kgs as weighed on the scales in the Haemotology Day Unit.

Tuesday 4th December 2007

I see Sangeeta this morning just as I am finishing my lung exercises. I am coughing up a lot more today, both before and after the exercises, giving me a bit of a sore throat. I ask her if my dilated alveoli will recover in time. Her answer suggested probably unlikely. I have a visit from Mia early afternoon and then am transported to Brighton General Hospital for my lung function test. I recognise John the ambulance driver from my police patrolling days in Mid Sussex back in the 70s and 80s! The lung test is disrupted somewhat by my still coughing up stuff. At one time I have to lie on the floor to make the coughing easier, simulating the lung exercises! I then have a visit from Jim, with Tina arriving shortly after he leaves. My coughing and the visits have tired me out and I sleep through the whole evening with my I-pod. My weight is 73.8 kgs.

Monday 3rd December 2007

Staff nurse Kate sees me this morning gleefully announcing that I have to do a 24 hour urine collection starting at 11am. This is one of the pre-transplant requests from Kings, which also included an echo-cardiogram and a lung function test. I discuss the chest situation with Tim Corbett when he sees me on his round. Unfortunately the Pseudomonas has colonised in my lungs, rather than being simply an infection and I will take it with me into the transplant. It will be a case of keeping it under some sort of control prior to and during the transplant - and afterwards no doubt. Tim’s assessment is that this moves the percentages for risk and success by something between 5 and 10%. I have the echo-cardiogram in the afternoon and then Tina visits me. I tell her about this latest assessment and we have a big hug-in. The renal unit seems to have a lot of confusing staff shift patterns so I see different people through the day. There are not so many nurses who are aufait with Hickman lines and the whole thing ran rather late such that I had my last Tazocin infusion at 1am. I had a bit of energy in the evening and started catching up on last week’s blog. My blood results today are - Wbc: 4.9; Neuts: 3.0; Hbn: 9.7; and PLT: 71. My weight is 73.6.kgs.

A Week of Treatment for my Chest

2007-12-13T12:31:00.000-08:00

Sunday 2nd December 2007

The morning routine has not settled yet and I don’t have my blood samples taken from my Hickman line at the time I have my first Tazacin infusion. Instead one of the phleb team takes them in the traditional way from my arm. It turns out they don’t get to the laboratory or the results are not put on record! Sister Peter brings me Holy Communion at 11.30am and Tina follows shortly afterwards, while Anita is cooking lamb shank at home. I have a restful afternoon and evening, reading the Sunday paper and checking out my camera. My weight today is 72.9 kgs but I suspect the scales are inaccurate.

Saturday 1st December 2007

Today is my 64th birthday! Fancy spending it in hospital! The change to a different nursing regime is quite noticeable. The Renal team appears to have a higher nurse - patient ratio, although they do have health care assistants to help as well. I get observations at 6am and then see no one until 9.30am, when my Tazacin infusion is usually given to me around 7am. Matthew visits at 1.30pm with a super present of a book about the battles of 1916. Tina comes in at 4pm with Anita and Bob, who are up for the weekend. I have a stack of birthday cards, a birthday balloon and my present is a Nikon SLR digital camera! With my old Canon having gone caput a few months back and my intending to replace it after my transplant, this came as a complete surprise. Tina also brings me a chocolate birthday cake and this is followed by another cake, with candles, from the kitchen staff with all the nurses singing me “Happy Birthday”. All very embarrassing but very nice. Shortly after Tina and company leave I am offered a move back to ward 1, but I am still under the Renal nursing team. Having missed my afternoon nap, I have a long sleep in the evening. My blood results today are - Wbc: 2.5; Neuts: 1.5; Hbn: 10.4; and PLT: 72. My weight is 74.4 kgs.

Friday 30th November 2007

Today has started very well. After calling Dave Lloyd with a welfare update, I get calls from Steve Scott, Martin Stevens and Jeanette. I see Ros Johnston on her rounds. We conclude that things seem to progressing quite well as I am bringing up lots of the nasty stuff from my lungs with my physio exercises. She tells me that Steve Devereux has been in contact with Tim Corbett to suggest that under the circumstances it would be best to put the transplant back to after Christmas. My CT scan could be at the end of next week before my discharge or sometime in the following week. I have visits from Sarah and Paul and then Mia again. All six beds in Haemotology are taken and another patient is having to be admitted, so late afternoon I am moved from ward 1 to ward 3 and my nursing care is “sub-contracted out” to the Renal team. I have less shelf space for all my things! Then toiletry evidence suggests that the C. Difficile “scare” may be over, but I am taking the Metronidazole until Sunday. My blood results today are - Wbc: 4.2; Neuts: 2.5; Hbn: 9.6; and PLT: 69.

Thursday 29th November 2007

I have a passing visit from Sister Peter around lunch time. As my neutrophils are 1.9 today I have a dose of GCSF and it is looking like I will be having GCSF every other day in order to keep my levels above 2.0. It is a lovely day outside so my afternoon exercise is a walk right round the outside of the hospital. The day is generally uneventful, except for a few changes of patients in the ward. Tina visits about 5pm en route to an evening at Matthew and Charrise’s. My blood results are - Wbc: 3.7; Neuts: 1.9; Lymph: 1.4; Hbn: 9.3; and PLT: 74. My weight is 74.2 kgs.

Wednesday 28th November 2007

I get a morning visit from Matthew together with decorative masks made for me by Ella and Lily. That cheers me up no end! I am also cheered by Sangeeta’s conveying to me the possibility that a CT scan might be sufficient to measure progress with the treatment. Thus avoiding the need for a further bronchoscopy. This will be confirmed later after consultation with the chest team. Tina has had a day out shopping in Brighton with Linda and Sue from work and they visit me about 4pm. Whilst they are here, Sangeeta comes with news that I may have to be moved from Haemotology to Catherine James ward. I am very reasonable about it, although saying that I would prefer not. Tina takes a far more determined stand and it does not happen! Good for her. I think I would have simply “rolled over”. I am well into Anna Politkovskaya’s diary - heavy stuff going on in Russia and Chechnya, with top level sanctioned murders, the re-creation of a “single party” state and electoral vote rigging. The latter is confirmed in the subsequent state elections of 2nd December!

Tuesday 27th November

As I am getting my first Tazocin infusion anywhere between 6 and 7am, I find I am showering around 7.15am or 7.30am whilst no one else is trying to get to the shower / toilet at that time. That sets me up nicely for breakfast and then a walk down to the hospital shop to get my paper - and for one or two others in the ward. The exercise is good for me and so is the routine - well so far anyway! My lung exercises seem to be going well. I see Sangeeta Atwal for my morning check up. As my diarrhoea is persisting, she advises I try to drink three litres of liquids per day, so as not to dehydrate. She has also prescribed a saline nebulizer four times daily to help loosen the mucus in my lungs. My blood results are - Wbc: 3.8; Neuts: 2.0; Lymph: 1.5; Hbn: 9.8; PLT: 568 and CRP 5. My weight is back down to 73.2 kgs.

Monday 26th November 2007

I am having honey and mixed nuts with my Ready Brek breakfast to make it tastier and Tina has brought in some Smoothies for me as well. With a slice of toast, that makes quite a filling breakfast. I am also trying to have a Fortisip three time a day, although often I am feeling too full to have it. I have visits today from Joyce and Vincent Meagher and Mia Morris. In the afternoon Rebecca, the physic, sees me and explains the physio-therapy breathing exercises I should do. The idea is to inflate the lungs in such a way as to draw out the mucus from the alveoli but to avoid excessive coughing. I am to do them twice daily for about 15 minutes - and they seem to work straight away! She recommends I have regular daily exercise, like walks around the ward. I learn that my lung condition is called bronchiectasis. I also hear that Andre Jansen from Kings has called the ward for an update on my situation. Tina visits as usual about 4.30pm. My blood results are - Wbc: 4.8; Neuts: 3.1; Lymph: 1.2; Hbn: 9.5; PLT: 59; and CRP < 5. I spend the evening resting and reading.

Back in Hospital to Sort out my Chest

2007-12-13T12:13:00.000-08:00

Sunday 25th November 2007

I am up and doing about 8am. I have a return of diarrhoea overnight and have to give samples. My weight this morning is 74.2 kgs - up a little. Father David Foley calls to give me Holy Communion after breakfast and I am seen by Tim Corbett and Sangeeta around 11.20am. I am to have some more Metronidozole strong anti-biotics for the diarrhoea to deal with any possible return of C. Difficile. This means no alcohol, so the “Guinness plan” has to be suspended. The medical plan is to run the intra-venous anti-biotics together with the physic-therapy for the next two weeks, then repeat the CT scan and bronchoscopy to track progress. The idea is to optimise my chest condition ahead of the impending transplant and to liaise with Kings on timing. It is possible that the latest provisional date I have for admission to Kings - 10th December - might still be a runner, if it is decided to go straight from here to the transplant. If not, perhaps a week later might still be feasible. Tina arrives at 12.20pm followed shortly by Bill and Jan Swallow. After Tina left I made my blog up to date and type out some emails to overseas cousins and friends. I don’t have my Gentamycin dose this evening as its level in my blood is still high and too much might affect my kidneys. Clever aren’t they? I have a quiet evening reading and I give Mary Roberts a call. My blood results today are - Wbc: 2.3;
Neuts: 1.2; Lymph: 0.9; Hbn: 9.1; and PLT: 59.

Saturday 24th November 2007

I am awake at 7.15am for a blood test and my morning Tazocin. I check my weight. It is 75 kgs on ward scales, but 73.2 kgs on the walk-on scales in the Day Unit downstairs. I must try not to get paranoid about a) my weight; and b) the differences between various weighing scales! My breakfast includes Ready Brek, the nearest the hospital can get to porridge and it is quite tasty! Tina calls to tell me that our 5 amp fuse has blown again. It blew about two weeks ago for the first time in years, but twice in short time is significant. It is also a very cold morning. I talk her through the repair. This is overheard by my bed neighbour, Terry, who gives me some good advice about getting a new fuse box and having our wiring checked over and maybe replaced. Given my situation and with winter approaching we want to minimise any electrics problems in the house. I call Stephen Pitt as he knows every handy person in our area!

I am checked over by Dr Sangeeta Atwal, the new registrar. I am still bringing up plenty of stuff from my lungs. I am to have a dose of immunoglobulin - Vigam - later today to strengthen my immune system. I am also prescribed Puriton anti-histermine tablets to help with the annoying itching I am still getting on my back, chest and arms. I am using the Doublebase cream to sooth the irritation, but guess I just have to put up with it for the moment. I am finding my appetite is slowly returning to normal and hopefully, I can start to put on some weight again. Tina visits me from 2pm for a couple of hours, bringing me a few goodies, including some cut pineapple and Guinness - purely for medicinal purposes of course! My Vigam infusion runs for about two hours to 6.30pm and is followed by an hour of Gentamycin. I then have a doze for an hour in the evening before getting back into my book. I bed down around midnight.

Friday 23rd November 2007

I have another easy morning but Tina hurts her lower back, bending to pick something up. She was a little energetic raking leaves in the garden on Wednesday and felt a slight twinge then. As a consequence she does not go in to work. By 11am I feel rather tired and have two hours sleep on the settee! We are just getting lunch when I have a call from the RSCH to say I can be admitted this afternoon. I do not want to risk Tina doing anything more to her back and fortunately Jim is available to take me down. I am admitted to a shared ward - Renal and Haematology - with six beds, two of which are for haematology patients. I am in bed 11 with Abi looking after me until 8pm. I am on Tazocin four times per day and Gentamycin once. I have these at 7.30pm with a second Tazocin around 11pm. The air conditioning in the ward gives it a temperature just below comfortable. It is probably ok for people on the move all the time, like the staff, but not so warm for the patients! I send 28 text messages to family and friends to say that I am in here. I have started reading “A Russian Diary” by Anna Politkovskaya, the journalist who was murdered for her anti Putin government views.

Monday 19th to Thursday 22nd November 2007

I have had my chest infection(s) for over twelve weeks now and no end in sight! Having had my bronchoscopy on Friday I am hoping to get a clearer picture of the problems today in my clinic with Tim Corbett. First thing today is to get the filling done in my wisdom tooth. I have had a temporary filling for over ten weeks and it really needed doing. I have had the ok from Kings for the treatment and Andre’s letter requests I have a short course of general anti-biotics afterwards. My dentist does some neat work and then prescribes me five days of Amoxycillin 250mgs. That is a good job done! My stomach definitely seems to have shrunk since Friday and I have not eaten that much over the weekend. A combination of several things I expect. I started the Voraconozole on Thursday evening and that may have shifted the balance somewhat. My porridge breakfast is a another squeeze and I force a sandwich down me for lunch. Tina comes with me for my afternoon clinic which is with Ros Johnston as Tim is still on the ward. Vicky Tindell and Nicola Worcester are in on it as well. Unfortunately the results from the bronchoscopy are not available but Ros tells me that I need to be admitted for seven to ten days of anti-biotic treatment - what form depending on the type of bug(s) they have found in the bronchoscopy samples. I will also have some form of physio-therapy to help shift the muck in my lungs. I have an image of being beaten on the chest by seven dusky maidens, but don’t expect that will happen! I can now stop the folic acid and furosemide tablets. My neutrophils are 2.7 today and my weight is down 2.2 kgs since last week at 72.8 kgs. Not surprising really as I have lost the fluid in my lower legs as well as my appetite. The stir-fry chicken dinner tonight is just right for me.

There is no bed for me on Tuesday but I have to go to the RSCH for my Pentamidine nebuliser at 3pm. I start catching up on last week’s blog in the morning and then have an hour’s sleep before lunch. I feel uncomfortably full long after breakfast and lunch, thanks to my shrunken stomach and hope this effect does not last too long. Strangely I think my taste buds have taken another turn. Perhaps it is the after-effects of Friday, or my new medications, or a combination of both. Whatever it is I am feeling peculiar and am not happy about it! Tina takes me down to Brighton as I sense I could feel a bit groggy after the nebuliser. Senior staff nurse Diane supervises my Pentamidine and tells me that there will be a bed for me on the Haematology ward tomorrow. I am still tired when I get home and have an hour and a half’s sleep. I have a Guinness before a light tuna and rice dinner.

Wednesday is another frustrating day as there is still no bed for me. Tina and I have a fairly brisk walk out for 30 minutes around 10am to get some fresh air in my lungs. I have not been getting any exercise of late and it was good for me to do it. I finish last week’s blog, struggle with some lunch and then have three hours sleep from 3pm. Food is still not a pleasure!

There is no bed again for me on Thursday and I am told that it will now be Saturday. I am coughing up phlegm quite a bit and wonder if my chesty problem has taken a change of some sort. I have an easy morning and get out to stretch my legs and get some air in my lungs before lunch. Tina and I go down to the RSCH at 3.30pm for my routine blood test. My results are - Wbc: 4.3; Neuts: 2.6; Lymph: 1.2; Hbn: 10.1; PLT: 82; and CRP: 6. My weight today has gone up a bit since Monday to 74 kgs.

I Finish the Ambisome and Have Another Bronchoscopy

2007-11-21T10:17:00.000-08:00

Saturday 17th to Sunday 18th November 2007

I have not slept too well probably because I slept so much yesterday. I eventually get up and have a tentative breakfast of porridge. I am not feeling hungry but know I must try to eat something. We have a lazy morning and my lunch is soup and some avocado pear. I have a visit from Michel after lunch and then rest up for the remainder of the afternoon. Strangely, I have two mugs of tea. I cannot remember the last time I had tea and enjoyed it! I have a cheese omelette for dinner but cannot taste it and rest up for the evening.

I manage some porridge again on Sunday morning, starting late and go to 10.30am Mass at Keymer. We arrive late, leave early and sit at the back, behind the glass screen. This is to avoid the risk of contact with a lot of people. Matthew, Charrise and the girls come for lunch, but I am feeling rather weary by 1pm, before they have arrived, and go up for an hour’s sleep. That helps. Tina’s Spanish pork casserole is good as usual. Today’s Observer carries an article about Pseudomonas as the new “super bug” causing fatalities in hospitals alongside MRSA and C. Difficile. Not very reassuring!

Friday 16th November 2007

I am “nil by mouth” from midnight and am woken up by staff nurse Leo about 6.40am for a blood test and to set up my platelets infusion, which runs for two hours. There is some confusion as to how I should get to the Endoscopy suite, but eventually I am escorted by two porters and a trolley bed! I have my procedure semi-prone - which feels strange - as opposed to sitting upright at Kings. However everything else seems to be better and I am conscious throughout, despite the sedation. Again it is something not to be repeated in a hurry! Kate Hurt carries out the procedure with the consultant, a Dr. Jackson, looking on with two rather interested students. There is the calming presence of a nurse - Jill - at my arm giving me reassurance and using a suction instrument in my mouth. Phase two - the obtaining of mucus samples doesn’t work and it is thought the instrument is faulty. Not so - a lump of my mucus had blocked the tube! At the end I am told that they have some good samples to check for bugs. However, Dr Jackson says that my airways are dilated; I will need physio-therapy and intra-venous anti-biotics as part of a plan to set me up for my transplant. He mentions Pseudomonas as a particular issue. He will be in touch with Tim Corbett about this and the results of the examination of the samples.

I feel quite good as I am moved into the recovery room, where I rest for an hour, but with a headache coming on strong. I ask for some paracetamol but cannot be given any as I am not on my ward. As I am being pushed back to my ward I am sick, although I have not eaten since 9pm the night before. I am told it is bile and that I am probably de-hydrated. I am given paracetamol, I should drink sips of water and I have some soup for my lunch. I then rest for another two hours before Tina comes to take me home. I am feeling a bit groggy and am glad I did not have to drive myself. Ten minutes into our journey and I am sick again. This is not nice at all! We get home to find the heating off and the house freezing because of a power cut. I go straight to bed and stay there. I am feeling lousy and just sleep. I have no food but keep on with the water.

In my post today I have a notification from Andre Jansen at Kings of a provisional admission date on 10th December for my transplant. Having learned what I have today about my chest problems, I wonder if this is yet another unlikely target date.

Monday 12th to Thursday 15th November 2007

I am into my third week of Ambisome treatment. There is some confusion over the dosage today due to some bad handwriting(!) but Santa is able to sort it out. I have my usual Monday Hickman line “care”, blood tests and then see Tim Corbett in his clinic. My chest is still the main topic of conversation. I am to have a CT scan tomorrow and another bronchoscopy on Friday - deep joy! I still have bits of rash on my chest and arms, so there is something still causing an allergic reaction. There are no conclusions on that, but perhaps it could be the Ambisome? My weight today is 75 kgs and my blood results are - Wbc: 5.8; Neuts: 3.9; Lymph: 1.2; Hbn: 10.4; PLT: 65.

I check my blog on Tuesday and find I have a comment from Danny Tall, my good friend from my very first Kings experience back in February. He had the “all clear” at his last clinic, which is great news. In the afternoon I have my Ambisome in the Day Unit and then go for my CT scan. There is no time for blood tests today.

We have a lazy morning on Wednesday and then Tina and I go to Brighton together. I have my last session of Ambisome and it is decided I should move on to Voraconozole, a tablet form of anti-fungal treatment - 200mg twice daily. My blood results today are: Wbc: 6.4; Neuts:4.6; Hbn: 10.6; and PLT: 65. It is arranged that I should come back tomorrow morning for a chat with a doctor from the Chest Team about my bronchoscopy.

On Thursday I see Dr Kate Hurt from the Chest Team about tomorrow’s bronchoscopy. I am to come in later today to stay overnight, so that I can be given some platelets before the procedure. Although I am prescribed a month’s supply of Voraconozole, I am only given two weeks’ worth at the hospital pharmacy; typical! I don’t have the inclination to take issue with them about it, besides my two hours parking is about to expire! Tina brings me back to the RSCH at 6.30pm and I have a room in the Haematology Ward. Familiar territory.

A Second Week of Anti-Fungal Treatment

2007-11-13T04:17:00.000-08:00

Monday 5th to Sunday 11th November 2007

I have another complete week of Ambisome intra-venous anti-fungal treatment. At his Monday clinic Tim Corbett puts me on GCSF on alternate days as he wants to keep my neutrophils above 2.0 during this current treatment regime and today they are only 1.2. My allergy rash continues annoyingly through the week, despite the anti-histamine tablets. I remain around 75 kgs all week, despite all efforts to put on a bit of weight. My neutrophils range between 2.2 and 3.9 with the alternate days of GCSF. My haemoglobin and platelets average 10.5 and 60 through the week. I am generally tired and have about two hours sleep most afternoons or evenings. Despite that we call in for tea and birthday cake on Mia’s third birthday on Thursday, have a pub lunch on Wednesday and I have a pint of Harveys in the New Inn on Friday. We also visit Terry and Les for tea on Saturday afternoon. Otherwise it is a quiet and uneventful week.

A Week of Anti-Fungal Treatment

2007-11-06T08:20:00.000-08:00

Monday 29th to Sunday 4th November 2007

I am feeling much better now. Although I still have a lot of nasty coloured catarrh, my cough is getting minimal. On Monday I have my Ambisome and then have a wait for Tim Corbett’s weekly clinic. He is quite pleased with my chest, although there is still a bit of a rattle down there. The fungal infection I have is called Aspergillus. From what I have read there are lots of different types. At least I know the name. He thinks I will have to have two, possibly three weeks of Ambisome. The good news, however, is that I am to come off the Itroconozole (yippeeeee!) as it clearly is no longer the effective anti-fungal it should be and the Ambisome has temporarily taken its place. He will put me on the tablet Voraconazole after we stop the Ambisome. This is the other drug in the clinical trial I signed up to recently to go along with my transplant. It looks like the decision on what drug I will Have has now been made! My blood results today are - Wbc: 2.7; Neuts: 1.2; Lymph: 1.0; Hbn: 11.1; and PLT: 72. My weight today is 74.8 kgs. I have a GCSF injection when I get home.

The rest of the week follows much the same pattern; daily Ambisome, driving myself down to hospital, except when Tina comes down with me on Wednesday and Jim does the honours on Friday so that Tina could have the car. My neutrophils go from 4.5 on Tuesday - after the GCSF - down to 1.0 on Friday. The GCSF takes them back to 3.3 on Saturday and 2.3 on Sunday. My weight fluctuates between 74.6 and 76 kgs - for reasons I cannot understand! - ending on Sunday with 75.8 kgs. I am feeling drowsy every day and most days I have two or three hours sleep in the afternoon or evening. Perhaps it is the Ambisome or - more likely - the anti-histamine tablets, Hydroxycine Hydrochloride.

We go to Matthews for some supper on Tuesday and have Stephen and Sue for dinner on Saturday night. It is such a shame my appetite is so small and I am still unable to enjoy a glass of wine, although the champagne was good!

I have been finding that the three ends of my Hickman line are a real nuisance. The square ends are quite sharp and stick into my skin. This is particularly irritating as the skin on my chest and stomach areas is already very sensitive with the rash. So I have shaved the corners smooth with a nail file and - hey presto - no more irritation! Now that is a good Hickman line tip for any readers!

A Bronchoscopy Finds a Fungal Infection

2007-11-05T02:35:00.000-08:00

Monday 22nd to Sunday 28th October 2007

I am down to the RSCH for Tim Corbett’s Monday clinic. My weight has gone up 1.6 kgs in the week to 75.4. My blood results are - Wbc: 2.6; Neuts: 0.8; Hbn: 11.6; and PLT: 73. As a consequence I give myself a dose of GCSF this evening. I still have a bit of a rattle in my chest. Tim has a look at my allergic rash, which has now spread from chest to shoulders, stomach, arms, neck and head - and is very itchy. He prescribes me two weeks of antihistamine tablets - Hydroxyzine Hydrochloride 25 mg three times daily - aware that I will be seeing a dermatologist at Kings on Tuesday or Wednesday.

On Tuesday Jim takes me up to Kings late afternoon and I am admitted a day ahead of my bronchoscopy. I renew acquaintances with several of the nursing staff from my past stays in Davidson Ward and the Derek Mitchell Unit - which is nice. I am seen by one of the haematology doctors and later by a chest consultant, who runs through what will happen tomorrow. Sounds pretty gruesome! I must have nil by mouth from midnight.

I am woken at 4.30am for a belated blood sample. Whilst I do not have any breakfast, I have some confused conversations about whether I can take my Itroconazole - I leave it - and how much water I can drink to take my tablets! I go for my bronchoscopy - or bronchiole alveolar lavage - at 10.30am, before which I am given 213 mls of platelets. They are a strange yellow colour, much like National Health orange juice used to look - but not to be confused! I sign away for the procedure having been assured that it will be uncomfortable and, despite the anaesthetic and sedative, so it turns out. In fact it is a most uncomfortable 15 minutes and not to repeated if I can help it! I have a tube inserted up my nose, down my throat and into one of my bronchi. A saline solution is used to flush the bronchioles and then suck up whatever is down there. Afterwards I see some nasty looking specimen jars lurking nearby, but I am too dozy to ask about them. I don’t remember how I got back to the ward. I slept for the next two hours. Whilst I am in a dazed state I am seen by two dermatologists about my rash. I don’t realise just how dazed I am until I try to remember afterwards what is said. They tell me that they will prescribe two different creams, a moisturiser called Doublebase and a steroid-based ointment called Eumovate, but I have no idea - or have forgotten - how they should best be applied, etc.
Tina is outside the hospital at 3.35pm but I am still waiting for the pharmacy - as usual. We get away 15 minutes later. My blood results today are - Wbc: 3.71; Neuts: 2.4; Hbn: 11.2; and
PLT: 66. We struggle a bit to work out the best way to put on my creams, ie before or after washing or showering, which one first, what, if any, intervals, etc.

Late Thursday afternoon I get a call from Kings telling me that they have found a fungal infection from my bronchoscopy. Arrangements are made for me to have a daily one hour dose of the anti-fungal Ambisome intra-venously at the day unit at the RSCH starting tomorrow. Isn’t that just great! One more thing!

I am down to Brighton for a 10.30am appointment on Friday for my first infusion of Ambisome. They have to make up the bag of Ambisome themselves in the unit as it comes in a powder form and is mixed with water. Saline solutions cannot be used as it solidifies. My dosage is 228 milligrams making just under 300 mls of total solution. I am told by Vicky Tindall that I will have daily blood tests as they need to monitor my white cells, kidney function and a number of nutrient levels. Ambisome can affect these and, if so, they would then have to change me on to another drug. I am finding that putting Eumovate on the rash area around my Hickman line entry point stops my putting plasters there as the plasters do not stick! I am told that as my line has set very well at its point of entry then I do not really need a plaster, other than to keep the three access “tassels” from dangling down too far or being tugged. So I can certainly manage for the time being without a plaster. My weight today is 75.6 kgs. My bloods results are - Wbc: 2.8; Neuts: 1.3; Lymph: 1.0; Hbn: 11.0; PLT: 74. As it is considered best to keep my Neutrophils above 2.0 while I am on this anti-fungal, I am given a dose of GCSF to self administer later today.

With the Day Unit closed for the weekend, I go to the Haematology Ward for my treatments. I see Paul Hill briefly on both days. He explains to me that both the fungal and bacterial chest infections I have are sitting latent in the body and have been activated in my case because of my low immune system. In other words I did not pick them up from a dodgy air conditioning system at Kings! My weight has gone down to 75.2 kgs. We have Tony and Pam for a much postponed lunch on Sunday - which was nice. I am still not enjoying wine. I sleep for two hours in the evening. My blood results today are - Wbc: 3.4; Neuts: 1.3; Lymph: 1.5; Hbn: 11.1; and PLT: 72.

My New Admission Date is Set and then Put Back

2007-10-23T06:45:00.000-07:00

Monday 15th to Sunday 21st October 2007

I have a blood test and attend Tim Corbett’s transplant clinic on Monday. This is a new clinic in which he sees pre- and post- transplant patients. Seems like a very good idea. Santa changes the Tegaderm dressing on my Hickman line to Mepore, because of my considerable allergic reaction. We conclude that my chest infection is getting better, but it will need checking in a week’s time. My weight today is down from last week at 73.8 kgs and my blood results are -Wbc: 2.6; Neuts: 1.1; Hbn: 11.7; PLT 87 and CRP: 5. Consequently I do myself a GCSF this evening. I am back to Brighton on Tuesday for my Pentamidine nebulizer.

I call Andre on Wednesday for the latest on my transplant. He tells me I should be admitted on 30th October, confirms that my no. 2 donor is lined up for “harvesting” and that my transplant date should be 8th November. Dr Devereux wants to see me this Friday and I will see the transplant team as well. I have an afternoon sleep for the first time in several days. Wednesday and Thursday are virtually “non days”. I am still sleeping quite a bit.

I see Steve Devereux at Kings on Friday morning after having my blood samples taken in the Day Room using my Hickman line. It is extremely busy there today. The consultation concentrates on my continuing chest infection as there is no way I will be going into a transplant procedure with it. The CT scan showed no sign of CLL and conjestion in the sinuses, but I really cannot remember what he said about down in my lungs, other than describing my bronchiole as a “tree in bud”. He wants me to come back early next week for a Bronchiole Alveolar Lavage (BAL) whereby they flush the farthest ends of the bronchioles to get out any nasty bits for examination. It may be that the Pseudomonas is just persisting - I am to continue with Ciprofloxacin for another two weeks - or there is another yet unidentified bug down there. He also wants to ensure that the infection is viral and not fungal. The procedure will be under anaesthetic with a sedative, so I will have to stay in one night. I later hear that this is lined up for Tuesday and Wednesday. I am asked to give a sputum sample, but I don’t think it was a very good one! Because of all this my transplant is put back another two weeks. I also point out that my apparent allergic reaction to the plasters has become a wider spread rash on my chest. I am to be seen by a dermatologist next week.

We have a busy weekend with Anna, Nick and Eva here Thursday and Friday nights and Linda and Paul, Friday through to Sunday. My taste buds are still a bit all over the place. I enjoy my beer and sandwich at the Royal Oak and discover that I am the only one of us who actually likes Fortisips! I have concluded that the great taste suppressant is most definitely the Itroconazole, as eating a lunchtime is far more pleasurable than breakfast or dinner. The weekend is spoiled by England’s losing in the Rugby World Cup Final and Lewis Hamilton’s failing to win the F1 Racing Championship in his first year.

At Last my Chest Infection is Gradually Going

2007-10-16T07:46:00.000-07:00

Monday 8th to Sunday 14th October 2007

I have a 10am appointment at the RSCH for my blood tests and a check of my Hickman Line on Monday. I wait quite a long time for the doctors to check me over and have to go out to move my car! Ros Johnston saw me with Dr. Marta. She increases my Ciprofloxacin to 14 days, adding that Pseudomonas is an awkward bug and, if things are not better by 7 to 10 days, I might have to come in for i/v anti-biotics. I hope that is not necessary as I have had enough of hospitals! - 12 weeks in 7 months is plenty for anyone! My weight today is down a bit to 74.4 kgs and my blood results are - Wbc: 2.5; Neuts: 1.0; Lymph: 1.2; Hbn: 11.9; PLT: 99; and CRP: <5. So I resume with GCSF just for today and await Thursday’s test. I am slightly surprised with my CRP reading as I would have thought it would be much higher, with the infection my body is having to deal with. I have decided to resume the daily Furosimide tablet as my legs appeared to thicken over the weekend. I manage to get through today without an afternoon sleep.

I spend Tuesday on paperwork and the computer, but get a nice surprise telephone call from my old friend Digby - from my 1970s detective days. We chew the fat; it was good. I have a bit of a sleep in the afternoon. I am coughing slightly less each day, it seems, but my appetite is no bigger. I am trying to keep up having Fortisips regularly, but it often slips.

Tina and I take rubbish to the tip and then go shopping in Burgess Hill, Wednesday morning. I have an hour’s sleep before lunch and then another hour plus afterwards. I don’t get much done today!

I have an 11.30am appointment in the RSCH Day Unit today, Thursday. I have the stitch removed from the line entry position and a new dressing. I have a rash on my chest. I think it is the Tegaderm dressing as it is quite itchy there, but Jason suggests not. I will give it a few days. My chest is checked out by Natalie, a trainee doctor. She is very pleased with it. Each day is getting slightly better. My weight today is 74.6 kgs and my blood results are - Wbc: 4.0; Neuts: 2.5; Lymph: 1.1; Hbn: 10.7; and PLT: 91.

On Friday I give Andre Jansen a call at Kings to check on progress with my no. 2 donor. He will get back to me on Monday, but meanwhile he books me to go up for a pre-transplant clinic on Thursday 18 October. Otherwise I have a quiet day catching up on things like our Christmas card lists, etc.

I get my ‘flu jab at Hassocks on Saturday morning, followed by some shopping in Burgess Hill. It is a sporting day with England football on TV in the afternoon and World Cup rugby on TV in the evening, the latter watched at Matthew’s along with his home cooked chicken curry - delicious, but more than I can eat. I just wish my taste buds were better. I am still piling on the salt to give anything flavour.

A nice easy start to Sunday with Mass at 10.30am. I find out that Annie’s daughter Holly will be having her kidney transplant about the same time as I have mine. We have a beer and sandwich lunch at the Royal Oak, followed by a dozy afternoon and another rugby watching evening.

My Chest Infection Bug is Identified

2007-10-08T09:48:00.000-07:00

Monday 1st to Sunday 7th October 2007

To the RSCH on Monday morning for my blood test, with Tina driving as I still do not feel comfortable driving. The top stitch on my Hickman Line was taken out, the line flushed and the dressing changed. Ros Johnston checked my chest and sent me for an x-ray with the probability they would arrange for me to have a CT scan as well, including my sinuses. I am to go back on Wednesday so they can check progress. My blood results today are - Wbc: 3.9; Neuts: 2.6; Lymph: 0.9; Hbn: 10.6; PLT: 103. My weight today is 75.2 kgs.

I am sleeping most afternoons for at least a couple of hours, but on Tuesday I sleep a total of between four and five hours either side of lunch. This is remarkable as I am also sleeping well at night.

Back for another check up and blood tests at the RSCH on Wednesday. My neutrophils are down to 1.8 today. I find that I have an allergic reaction to the transparent plaster - IV 3000 - holding my Hickman Line and this is replaced with Tegaderm. I hope that is ok. The CT scan has been requested but it may take a couple of weeks before I get it.

Jim Rodgers calls round on Thursday morning for coffee and a chat. We then have a walk up the High Street for some fresh air and find ourselves having a pint of Harveys in the New Inn. I can taste the beer! Before that I call Judith, Dr. Steve Devereux’s secretary, and am able to get a slot at the end of his clinic tomorrow as I am concerned about my cough, my tiredness and my loss of appetite, bearing in mind my oncoming transplant.

I drive to Kings on Friday for my pre-transplant session. (Tina drives home but gets the worst of the deal!) No one from the team is available when we arrive, but I eventually get some clarity about what blood samples are needed. I set the cat among the pigeons at the bloods room as they have no prior notice of the request, but the receptionist is as efficient as ever and soon sort things out. The funny thing is they are not trained to make use of Hickman Lines, so it is back to my arm. I am seen by Steve Devereux about 12.30pm. He is very attentive to my chest cough - upper respiratory tract infection actually - as this needs to be sorted out before going into the transplant procedure. He gets me a CT scan today on my sinuses - and full body for staging purposes. That’s much better than waiting two weeks or so! He is sympathetic to my appetite loss issues and takes me off Corsodyl and Nystatin (hurray!) but keeps me on Itroconozole (ugh!). He suggests I stop the Furosimide as well. He also explains that my tiredness is natural considering the heavy chemotherapy regime I have been on, the nasty chest cough, the medications and hospitalisations I have had over recent months. He does not need me to see Mansour or any of the team as it is only three weeks since the last time and the priority is to get my chest sorted out. I have a provisional appointment to see him again in two weeks. We leave much heartened and reassured by this session.

On our way home I get a call from Jason in the RSCH day unit telling me that the laboratory has found a bug in my last sputum sample and that it is sensitive to Ciprofloxacin. So we go straight down to Brighton, collect the prescription and call into Asda to get it dispensed. I am later told that the bug is Pseudomonas, one which is quite regularly found but specific to people who are immune suppressed.

I am catching up on my diaries of our breaks away this year and have two of them done by Sunday. Saturday and Sunday are Rugby World Cup quarter finals days - a good excuse to keep my feet up and ease my water retention problems! England confound the critics. Australia and New Zealand are both sent home early! We walk up the village on Saturday afternoon as Tina wanted to see the plot I have bought in the cemetery. She likes the position - it is facing west, against the old cemetery wall below a very healthy looking holly tree. I am very pleased this has worked out so well. On Sunday I have a late afternoon nap. Our dinners this weekend have been fillet steaks and pork fillets. They are tasty, but I am still off wine - unfortunately! Whilst I am still having coughing sessions, I think things are getting slightly better.

Getting Used to Being at Home

2007-09-30T12:07:00.000-07:00

Tuesday 25th to Sunday 30th September 2007

I am back to the RSCH on Tuesday at short notice for my regular blood tests instead of going up to Kings for my transplant. My weight is once more 75.8 kgs and my neutrophils have responded extremely well in recent days. My results are - Wbc: 12.2; Neuts: 10.7; Lymph: 0.9; Hbn: 10.7; PLT: 98; and CRP: 12. I have been feeling very weary lately, perhaps the effects of my constant coughing on top of the fitting of my line. I have two-plus hours sleep this afternoon.
On Wednesday, while Tina does the shopping, I continue with my tax returns, interrupted by constant coughing sessions. I have three hours sleep in the afternoon. Thursday is another non day, with another two hours in the morning taken up by coughing. I am getting very cheesed off with this!

On Friday I am back to the RSCH for a blood test and a check on my Hickman line dressings. I now have a transparent dressing for the main entry position. The discomfort has eased somewhat from last weekend, but the area is sill quite tender. My coughing continues to dominate my mornings and I will see a doctor on Monday if things have not improved. My weight today is down a bit at 75.2 kgs. My blood results are - Wbc: 4.2; Neuts: 2.3; Lymph: 1.5; Hbn: 11.0; PLT: 118; and CRP: 12. Laura advises that I do not need to resume GCSF unless my counts drop further by Monday.

I spend both Saturday and Sunday very quietly. My cough and catarrh are still making me feel most uncomfortable and I still have a perpetually medicinal taste in my mouth. Sadly, my appetite seems to have gone. I don’t even feel like going out to the Royal Oak for a beer and sandwich lunch! This must change! Quite how I am not sure, but it must!

My Donor Pulls Out

2007-09-29T07:30:00.000-07:00

Monday 24th September 2007

I get a call from Andre that my no.1 donor has pulled out - reasons undisclosed - so they are now making contact made with the no.2 prospective donor. This will obviously include a number of checks etc. and I have a provisional admission date of exactly 4 weeks later than the original i.e. Tuesday 23 October.

Oddly enough I am very relaxed about this, mainly because I knew there was a back-up. Hopefully he/she won't do the same! I am also rather pleased things have been put back as I still have this very nasty chesty cough and cold which I picked it up in Kings and which has been with me for over 4 weeks. Added to that, my Hickman Line is still rather painful - not helped by all my coughing I am sure! So the chances were that I would have insisted on a delay anyway in order to get my cough and cold sorted out before starting the 8 days of rather exacting chemotherapy I am told I must have. Well it also gives me time to do the many things I had intended doing before going in for the transplant - and which I had not found the time to do. This includes my tax return!! - which I have just started to work on today.

Tina is not quite as relaxed about things as I am, but agrees it would have been necessary to put back the transplant because of my cough and cold. She is more comfortable now we have a new date - albeit provisional - for my admission. We are having a couple of days with Anna, Nick and Eva passing through en route to Slovakia on their latest assignment. They will be away for about 3 weeks, which sounds like quite good timing.

I Get a Hickman Line

2007-09-29T07:25:00.000-07:00

Thursday 20th to Sunday 23rd September 2007

Thursday is a day for relax and recuperation, before going down to Brighton on Friday for blood tests and the fitting of my Hickman Line. I see Tim Corbett about my chesty cough and he prescribes me Augmentin to ensure any infection is sorted out. I have a sedative to help make the Hickman line fitting a lot easier for me and it knocks me out from 12.15pm to 3pm. That’s the way to do it! I have no idea what happened and that suits me fine. I weigh in today at 75.8 kgs and my blood results are good - Wbc: 9.2; Neuts: 8.3; Lymph: 0.5; Hbn: 10.2; PLT: 113; and CRP: 10.

I am feeling the after effects of the fitting of my line by Saturday morning, with a rather bruised collar bone area and chest. This is not helped by my chesty cough seeming to be worse than before. So we call off our planned lunch with Tony and Pam at Seasalter. Tina takes me down to the RSCH where my Hickman line is cleaned and re-dressed in the Haematology Ward. She learns how to do this for me for the next few days. I then have a quiet day, watch England beat Samoa and have a good three hours sleep afterwards. Later Tina and I have a “heart - to - heart” about the impending transplant and its potential prospects. In the course of this we talk about what happens if I do not survive the procedure. We had often talked in the past about who might survive whom and about buying a burial plot in the village cemetery, but had not discussed these things since I was diagnosed. Delicate territory I suppose. I tell her that I had bought a very nice plot a couple of months ago but only wanted to mention it when it was the “right” time - whenever that might be. This was it. Although all this is difficult to talk about, we feel very close.

I am not feeling much better on Sunday - in fact my shoulder area is decidedly tender - and my cough is no better. We have Matthew, Charrise and the girls for the day. This includes my going through a number of practicalities with Matthew following our talks last evening. I have typed out a fairly comprehensive list of things “in case anything happens….” Matthew is super about it all and I know will be a source of great support to Tina should the worst actually happen. I plan to talk these things through with Anna as well when she is with us in the next couple of days. By mid afternoon I am tired out and have another three hours sleep on the bed.

Away to St Malo

2007-09-29T07:19:00.000-07:00

Saturday 15th to Wednesday 19th September 2007

I drive to Portsmouth on a warm sunny day to catch the 3.45pm Brittany fast ferry to Cherbourg. We arrive at our hotel (the Beaufort) at 10.30pm, unpack and go straight to bed. I ask the receptionist to put my two packs of GCSF in their refrigerator, having brought them over in a cool bag.

Sunday is a day of wall - to - wall sunshine. After a full French lunch I sleep on the beach for about two hours - lovely! Fortunately I put sun cream on my head and avoid any sunburn. Neither of us feel like eating anything in the evening so we stay in our room, reading, etc. I remember to do my GCSF injection - thanks to my mobile phone “reminders”. This hotel is a really good find!

Monday is wet and windy. We spend most of the day in the splendid hotel lounge / breakfast room with views out to cloud covered seas . I catch up with my blog - right up to date (!!!) and am able to go online with the hotel WiFi - the wonders of modern science! But I can only download emails, not send any for some inexplicable reason. We don’t feel like anything for lunch but make up with a rather good meal at a nearby brasserie in the evening.

We wake on Tuesday to a startling change of weather. Bright, breezy and fresh, with sun and racing clouds. I post the “Escape from Kings” week on to the internet blog before we venture out to the Citadel. There we have lunch, walk the ramparts and then back to the hotel along the sandy beach, by which time I have had enough exercise for one day. Again, I remember to do my GCSF injection before we are out for yet more excellent French food at another nearby restaurant.

Again I feel ok for driving and we take the coastal road to Concalle before getting on the main roads back to Cherbourg, in time for some lunch and shopping before a rough ferry crossing to Portsmouth. We are home about 9.15pm and I am tired!

Back on My Feet and the Transplant Programme Explained

2007-09-29T07:14:00.000-07:00

Monday 10th to Friday 14th September 2007

Friday 14th September 2007

This is a big day for us with the whole day at Kings to see the transplant team and to have my kidney function test and whatever else they might throw at me! Steve Devereux is away today, so we do not see him and, as it happens, I don’t think it necessarily mattered. The kidney function test is done in the Nuclear Medicine Department and takes all day. It starts with an injection, followed two hours later by a blood test and three further blood tests at 45 minute intervals. I have a cannula fitted to make these easier. In between times, I have a chest x-ray and an ECG. Andre also needs about ten further blood samples, which the sister in Nuclear Medicine takes for him. It is a good thing I have a cannula! Having said that it becomes more uncomfortable as the day goes on as it is in the crook of my arm. We bump into Danny and Donna in the haematology waiting room once again. It is great to see them and we have a good chat. Danny is waiting to get the results of his latest assessment and is hoping he has an “all clear”. He certainly deserves it.

We have a long and informative session with the transplant registrar, the delightful Dr. Mansour Ceesay. He runs through all aspects of the transplant programme and I sign the consent form. There are to be nine preparation days before the actual stem cell transfusion. After a reception day (25th September) I have eight days of chemotherapy - as if I hadn't had enough! The drugs are Campath - part of my most recent treatment - and Fludarabine - which I had back in 2004. Neither presented me with any problems like hair loss or nausea at the time, but I am told to expect to have both of those things happen to me this time. I suppose that is because they are in tandem and both intra-venous. We shall have to wait and see. So this means that the transplant itself will happen on or about 4th October. This doesn't alter the projected length of the overall hospital stay at 4 to 6 weeks in all. He goes into some detail about the various disease and related problems that are likely to arise and how they would respond to them, with anti-biotics, blood products, etc. Without making a big issue of it, Mansour points out the 20 to 30% fatality risk in the procedure. That is a bit scary, but we don’t dwell on it as I am determined it is not going to apply to me!!! We are introduced to Elizabeth, the clinical trials co-ordinator for a study of the comparisons in efficacy between Itroconozole and Voriconozole as fungal infection prophylactic medicines. The Voriconozole is given in tablet form and - knowing how much I dislike the dreaded Itroconozole - I sign up immediately. Unfortunately the choice of patient to medicine is done by random draw, not patient choice. So I am foiled at the outset from escaping one of the world’s most unfavourite medicines! Never mind, there is a greater cause! As with so much about Kings, Andre is most attentive to any needs we might have and makes sure we don’t leave without having the opportunity to ask any further questions, etc.

We drive home and are straight out to Stephen and Sue’s for a candlelight steak supper on their new patio while, in the background, England get a thrashing from South Africa in the Rugby World Cup! A lovely way to end a packed day - the steak supper, not the rugby!

Thursday 13th September 2007

Terry comes round to give me a hand with the leak problem we have with the water butt. It appears that it has probably been leaking from a dodgy tap fitting for over a year presenting a potential rising damp problem for us and next door! It transpires that the problem is a washer was never fitted in the first place, so no wonder it leaked. I get a replacement tap gratis from Colin’s hardware and back goes the water butt in the afternoon, without Terry’s help. I am careful to wear my large gardening gloves at all times to avoid any possibility of infection to my hands, especially my right thumb, which still has no quick protecting it. I also discover that Tosca has been pooping on the gravel at the back and side of the conservatory - the route to the water butt. Yet another health hazard to negotiate for me!! By 5pm we are at Hickstead Showground for Tina’s previously postponed 60th birthday balloon ride. Charrise brings Ella, Lily and Mia to see us off and we have the wonderful sight of Ella running like mad across the field waving her arms furiously and trying to keep up with us as we lift off. Sheer delight!!

Wednesday 12th September 2007

Tina and I go down to PC World in Portslade to buy a new keyboard with a USB connector to fit with the docking station. After some shopping in M & S we have lunch at the Royal Oak at Wineham. This is my long awaited appointment with a pint of Harveys best bitter - and it is truly wonderful!!! To my best recollection and checking this blog, the last pint of Harveys - or any proper draught bitter for that matter - I had was on 24th June at the George at Cranbrook. That’s nearly three months ago!!

Tuesday 11th September 2007

I have an 8.45am appointment at the RSCH for a Pentamidine Nebulizer. This is followed by a blood test in the Day Unit and a review of my medications by Tim Corbett. My thumb has recovered sufficiently for the 14 days of anti-biotics to have been enough - great news - and he cuts the GCSF down to every other day. My neutrophils show another good rise, by another 0.8, to 3.2. My full results are - Wbc: 3.7; Neuts: 3.2; Lymph: 0.3; Hbn: 10.9; PLT: 96; and CRP: 10. So, good news on the infection front as well.

Monday 10th September 2007

I am still trying to get my feet up as much as possible and the weather is just right for sitting in the conservatory, with doors and windows open to keep the temperature even. So this is where I entertain Peter and Suzanne for their visit to me in the morning en route from an overnight in Alfriston and then Mavis and Andrew in the afternoon with their return flight to Canada tomorrow. It is interesting that Andrew’s cousin is going through a similar transplant process up in Birmingham.

Getting Back on My Feet

2007-09-29T06:57:00.000-07:00

Monday 3rd to Sunday 9th September 2007

Sunday 9th September 2007

I still have my horrible cough and cold, so have to absent myself halfway through Mass to avoid interrupting proceedings too much. We then drive to Richard and Jane’s at Shorne for the grand Ugarte family reunion in memory of Eve and Tessa‘s recent and forthcoming first anniversaries. Ironically today is the 15th anniversary of John’s death as well. We have a super late summer‘s day with lunch out on the edge of their field. I am on the Metronidazole wagon of course, but with my taste buds still all over the place, it is really no problem. Very nearly all the Ugarte, Sharp and Hart clans are there and there is absolutely no lull in the conversation as everyone moves from table to table catching up with cousins, etc. Jane plans to repeat the event again next year. I manage to get my feet up for some time before lunch, but it is not so easy afterwards. What is good for me is that I can get out and enjoy myself at an occasion like this, which seven days earlier would not have been the case at all.

Saturday 8th September 2007

A quiet day with a wander up the village for coffee and also chats and buys in Inspirations. Simon comes to us in the afternoon and does some clever stuff with the laptop, setting up the printer and the Ion record deck. It isn’t easy and he has to use all his acumen. He is finished just in time for us to watch the England - Israel Euro ‘08 qualifier.

Friday 7th September 2007

At last I have finished my seven days of the dreaded Metronidazole! I am not sure yet whether it was to blame for the nasty taste I have had in my mouth day and night, or not. I still have a further five days before I can have any alcoholic drink and can hardly wait for the chance to try a pint of Harveys! I get a newly published Q & A book in the post from the CLL Support Association. It states it is more for dipping into rather than reading from cover to cover. It certainly goes into a lot of detail and I am sure will prove to be extremely helpful to me - even after all this time - and to those recently arrived on the CLL scene. I spend a lot of the day sorting out paperwork, etc. that had accumulated during my six weeks in hospital.

Thursday 6th September 2007

I am back to the Day Unit for a blood test today, the results of which show once again
a really good increase in my neutrophil count of another 0.8, to 2.4! My full results are -
Wbc: 2.8; Neuts: 2.4; Lymph: 0.2; Hbn: 10.7; PLT: 86; and CRP: 11. I also get a script for daily GCSF for the next three weeks and my weight is slightly up at 77 kgs. I don’t know why, but my oedema has returned in a big way, with my legs swollen from feet to thighs again. My best guess is that I am not resting my legs enough - which is true! There are so many distractions at home stopping getting those feet up for any length of time, compared with being in hospital. One of these distractions - successfully completed - is to book ourselves for four nights at the Hotel Beaufort in St. Malo from Saturday 15th. The Rough Guide to Brittany and Normandy comes to the rescue in the search for the “right“ hotel, with a rather nice write up for the Beaufort. Then one look at their website is enough for me to be on the telephone to Sylvie Peterson and “Yes I do have a sea facing room for four nights for you” is her response. (Matthew later does us proud with a good price for the Portsmouth - Cherbourg ferry!) My small exercise regime is beginning to work. I am increasing the number of knee bends daily and am now up to 18. More importantly, my leg muscles feel so much stronger, particularly my thighs.

Wednesday 5th September 2007

We spend a quiet day together, including a stroll up to the village and a coffee in Café Murano. I am still struggling somewhat with the taste and smell of coffee, but the Murano coffee is always excellent. The smell of instant coffee is a real problem for me - so I haven’t a clue what the taste is like! In an effort to build me up, we bought some more of Clive’s superb meat for tonight’s dinner. I am eating quite well, but still do not have a fulsome appetite.

Tuesday 4th September 2007

In the morning I visit the dentist because of the lost molar filling from a couple of weeks back. The dentist is extremely attentive to my medical condition, medications, etc. and makes extensive notes for the dental records. I am very impressed - and I am very fortunate to have a dentist who is still on the NHS. She advises that she will not do a complete filling as this would require an anaesthetic and would not be a good idea given my current situation. So I have a temporary filling instead and must go back once I am through with the transplant and back to full health. Tina then drives me to Brighton where I have three units of blood. I am still having problems with my veins, despite the use of the heat pad. The chosen vein is at the base of my right thumb and rather uncomfortable all through with the third unit going in quite painfully. It doesn’t help that I have a slightly arthritic thumb joint! I get my chest checked out. It is OK but with congestion - and catarrh - in the upper respiratory tract. My weight is as yesterday -
76.5 kgs.

Monday 3rd September 2007

I am now happy to drive myself so I drive to Brighton for my 10am blood test. It turns out to be a very busy day for me and I have no time to put my feet up until late afternoon. I call into to Vincent and Joyce’s for a cup of tea - as opposed to their kind thought of a visit to “the sick” by coming to see me! When I get home there are letters from Kings about pre-transplant appointments and then I get a call from Andre Jansen to tell me my admission date will be Tuesday 25th September - Eeeeek! My blood results show a further improvement with my neutrophils, but I am anaemic and need a blood transfusion. No wonder I had been feeling I lacked energy! My results are - Wbc: 1.9; Neuts: 1.6; Lymph: 0.2; Hbn: 8.4; PLT: 83; and CRP: 12. But I have to go back to the RSCH in the afternoon for blood matching and still have time for an hour’s sleep! I spend some time later looking on the internet for somewhere in Normandy or Brittany for a few days break before I go in, but without coming to any conclusions. We are determined to get away for some quality time together after six weeks enforced separation and with the prospect of another six weeks apart with my transplant. My weight today is 76.5 kgs - up 1 kg from Thursday.

Week Three in Kings: Discharge and Clostridium Difficile

2007-09-18T02:01:00.000-07:00

Monday 27th August to Sunday 2nd September 2007

Thursday 30th August to Sunday 2nd September 2007

I have a nice sleep-in to 7.40am on my first day of freedom and have my usual breakfast but struggle with the thick toast we have at home. I walk up to Janton’s for my paper at 11am and drop into the Rodgers for some coffee. Funny having coffee for the first time for well over six weeks, but it is proper filter coffee as ever with Jim and Cath and works well with my taste buds. I admit that it is a bit of a try-out as I have no idea what it would be like. I am back on my regular lunch menu - Covent Garden soup, pastrami and Ryvitas - but no salad yet as I am still neutropenic. I am still a bit wobbly so Tina came back from work to drive me down to the RSCH for a blood test arranged for 3pm. Great news - I break through the neutrophil barrier with a count of 1.1! My full blood results are - Wbc: 1.5; Neut: 1.1; Lymph: 0.4; Hbn: 9.2; PLT: 83; and CRP: 12. My weight is 75.5kgs.

My diarrhoea has returned so on Friday morning I go to see Richard Cook for a prescription for seven days of Metronidasole. This is not good news as, not only has the C-Difficile returned, but I cannot drink alcohol for the next 12 days! While I with Richard I also get a prescription for a supply of Fortisip build-up drinks and then I walk round to the Swallows and deliver Dris’ Moroccan melon to them for Anna. I think Richard might have thought it was for him!
We had a very quiet weekend, simply resting, doing nothing and having no visitors either. It was just what we both needed. We celebrated the return of a certain amount of appetite with fillet steak - Clive Miller’s finest! I spend as much time with my feet up as I have a lot of oedema.

Wednesday 29th August 2007

I am awake and doing Sudoku from 5am for the second day running. But lots of catarrh and coughing up phlegm - and some sneezes too! After 30 minutes of the heat pad, my morning blood sample is offered up by my right arm with no difficulty, as opposed to yesterday. For the fifth day running my weight is 75 kgs. That is with a pretty good breakfast and two cooked meals a day, plus three Fortisip drinks. I am advised by Staff Nurse Helena to keep building up my weight over the weeks ahead as the likelihood will be for me to lose weight post transplant. Sounds like good advice to me plus a daily diet of Fortisips to look forward to! My blood results today are - Wbc: 0.86; Neut: 0.60; Lymph: 0.25; Hbn: 9.1; and PLT: 64. So small but steady progress with the neutrophils and we are aiming for my discharge for later in the day. Tina is here at 4pm. I am packed and ready but have to wait to get the all clear on my thumb from Kat at 6pm and then my medicines, including 14 days worth of the three anti-biotics. At last I escape at 7.30pm after a total of just short of six weeks incarceration! We have a good run and are home at 9pm. It’s so good to get home again, but I have left hospital with two unwanted “presents” - a bad cold and Clostridium Difficile!! - not exactly a “healthy exit” plan!

Tuesday 28th August 2007

My weight is 75 kgs again. My early morning anti-biotic bolus is quite uncomfortable - not really unexpected. Despite the heat pad Jinky cannot get blood from me this morning and Kat decides that alternate days will suffice. I would prefer to know what my counts are every day, but recognise the practicalities once again of the “trying to get blood out of a stone” syndrome. Because of my awkward left wrist I have a right handed wash, after which I notice that my thumb “wound” is open, tempting me to do a little squeezing and up pops another small piece of foreign matter looking like a tiny black headed grub. I wait to be seen by Kat and a new registrar (Dr) Jane who ease out what could be the tip of a rose thorn followed by a small piece of tissue - or something. I wonder is that everything now? I am told that a decision may be made to change me to oral anti-biotics this afternoon. I go for a routine x-ray - apparently this happens every week to all the patients on this ward. My 2pm bolus is equally uncomfortable as earlier. After several days of extra effort I have managed to completely catch up with my blog, made easier thanks to my habit of making lots of notes! Talking to Matthew on the phone, he checks my blog on the internet - my last entry is dated Friday 15th June. So I am over ten weeks out of date!

I am told that my diarrhoea sample from Saturday has shown that I have the infamous Clostridium Difficile infection - great! Frances gives me an explanatory leaflet and I am seen by Kat. Because the symptoms were gone in two days, I do not need to have any anti-biotic treatment. However the infection will remain in me for 14 days, so I must be even more meticulous with hand washing after using the toilet - the alcohol-based hand cleanser in ineffective in killing off the spores. Apparently the spores are very hardy and can be transported to and from patients, etc. by the hands. It is likely I have caught it because I have been on anti-biotics, altering the normal bacteria in my bowel and allowing Clostridium Difficile to multiply. However it is not always very clear how it gets there in the first place. If I get a return of the diarrhoea I must get the anti-biotic Metronidozole from my GP - probably a seven day dosage. Lets hope that doesn’t happen. Because of the recent promising developments with my thumb, Kat has also decided to take me off the intra-venous anti-biotics and put me on to oral. I have Flucloxicillin, Amoxycillin and Augmentin three times daily, starting this evening. She will check how the thumb looks after three doses, ie late afternoon tomorrow, with a view to my possibly being discharged then. To my immense relief I have the cannula removed from my wrist in the evening, so that I can move my left hand without the stabbing discomfort of the last 24 hours. I finish “Rough Crossings” -what a brilliant book!

Monday 27th August 2007

It’s August Bank Holiday, the weather is good, as it’s been for the last two days and forecast for tomorrow as well. My cough and cold seems slightly better and the diarrhoea has gone. My weight is 75 kgs again this morning. I see Dr. Vidya and she removes some “stuff” from the hole in my thumb. In the middle of it is a piece of thorn! At last! Maybe now it can start healing itself. The not-so-good news is that my neutrophil count is down to 0.41. My full blood results are - Wbc: 0.80; Neut: 0.41; Lymph: 0.38; Hbn: 9.6; PLT: 51; and CRP: 14. I have a celebration Guinness with my lunch on the strength of the thorn removal. I have a good chat with Michael, the ward volunteer, in the afternoon. I have been increasing the number of knee bends I am doing for my exercises and am now up to 15. It doesn’t sound much but it is hard and quite painful, so I guess it is doing me some good! My cannula becomes too painful for me to have my evening anti-biotic, so it is removed and replaced by one on the inside of my left wrist. This is an awkward place and very uncomfortable, as any movement hurts. However the first dose of anti-biotics goes in painlessly. I have felt that the filling on one of my lower right molar teeth has shifted position in the last couple of days, but could not work out was has actually happened. This evening, with a little help from my thumb nail, out pops a crown! It feels like I now have an enormous gap in my back teeth! - and an urgent and expensive visit to the dentist as soon as I get home. At least it has happened now and not while I am having my transplant!

Week Two in Kings and I Nearly Get Home

2007-09-10T11:02:00.000-07:00

Monday 20th to Sunday 26th August 2007

Sunday 26th August 2007

I wake with a definite cough this morning and bringing up chesty phlegm. I have more catarrh as well. I am asked to give a sample of sputum. It is green - not so good. I mention this to the two Sarahs; I am checked over and given an all clear for today. My blood sample is taken at the second attempt, helped by the heat pad. It seems that the veins in my right arm are much easier to access than those in my left - and this has been the case for the past few days. Tina arrives at 1pm and stays for three hours. Just before she leaves I get my blood results, which tell me that my neutrophils have gone up again - to 0.54. My full results are - Wbc: 0.94; Neut: 0.54; Lymph: 0.38; Hbn: 9.8; PLT: 51. My weight this morning was 75 kgs again.

Saturday 25th August 2007

My weight is 75 kgs this morning. My blood samples are taken easily after using the heat pad and I have no discomfort with my anti-biotics even though the cannula is in an awkward and slightly painful place. I now have diarrhoea(!) - such that I have to give a sample for analysis. The little plug of congealed blood comes out from the “head” of my infected thumb. I keep it but is of no real interest to the doctors when they come - two Sarahs. But the good news is that my neutrophils have doubled since yesterday. My blood counts are - Wbc: 0.93; Neut: 0.49; Lymph: 0.42; Hbn: 10.8; PLT: 54; CRP: 10.7.

Fr. Luke gives me Holy Communion in the afternoon, which is otherwise spent watching Rugby League and Union through to 7pm. My anti-biotics boluses are quite uncomfortable despite the cannula being only 20 hours old. I am catching up well with my blog entries, bearing in mind how many days I let slip by feeling up to doing it. Despite realising some days ago that I should be doing leg strengthening exercises, I have not got down to doing any yet! So I have decided to put a reminder on my mobile phone for the afternoon and evening and I do six or eight knee bends - at least it is a start. I have also started a cough this afternoon; this on top of an increase in catarrh and nose blowing in recent days.

Friday 24th August 2007

I am awoken at 5.30am so they can have early blood samples. I suggest the heat pad will help - and it does. Staff Nurse Susie has no problem getting a large number of samples. The process is repeated later in the morning when some further samples are required and it works successfully again for Jinky. I am 76 kgs again today. I spend the morning on my blog, before lunch and then Matthew and Charrise both arrive at the same time. It is their anniversary and they are in town for the day and overnight, having dinner at Mon Plaisir and seeing “Joseph”. My blood transfusion is started at 12.30pm. Tina calls me to say that Steve Scott has offered to drive up with her to collect me. Isn’t that great! One of the pharmacists comes by to go through my discharge medications with me. She says with confidence that they will all be with me by 3.30pm. I say that I will believe that when I see it and of course they arrive at 5pm. Fortunately I am not held up because of that as Tina arrives at the same time and we do the final packing. In the meantime I have had a discharge chat with Dr Lara about my temperature not being below 37 for the last 36 hours. I also point out that as I am having the second unit of blood and whilst talking to her I am having a hot flush for half an hour or more. She checks me over and says that I am ok as long as my temperature does not go above 37.4c. Looking ahead I ask if there is a possibility of having the kidney function test, the fitting of the Hickman line and the clinic appointment with Steve Devereux all arranged for the same day.

I then have a very interesting visit from someone from the Hospital’s infection control team to check on the cleanliness of my room. I take the opportunity to mention something that has been bugging me for months, particularly in relation to MRSA. This is that, with the exception of here in the Derek Mitchell Unit, in all my recent experiences of three hospitals and at least six wards - maybe more counting Darenth Valley - I have never seen or heard a member of nursing staff challenge anyone as to whether they have cleaned their hands before visiting a patient - NEVER, EVER! There seems to be a total reliance on visitors - or whoever - knowing they should do it as they enter a ward or being reminded by their reading the advisory notices - which are of varying quality and visibility and can be passed by unseen. As a patient, I have never been told what infection control regime I should adhere to either. I am amazed that nursing staff do not seem to think it is within their responsibilities to “gatekeep” infection control on their wards. This, despite the huge media focus on MRSA and other hospital based infections. So the lady from Infection Control got more than she expected from her visit to me! She explained that her unit ran training for nursing staff on Infection Control and she would feedback my comments into the training they did.

At 6pm Tina is with me, I am packed and ready to go, when I notice that the little plug of dried blood at the core of my infected thumb had popped out and was hanging on by a small piece of tissue, exposing a small hole underneath. I am not happy about this, so I ask that a doctor see it. Fortunately it is Kat who comes and she doesn’t like the look of it, but more importantly notices that my thumb is more inflamed than yesterday. So we made a complete volte face. I am to stay in order to go back on intra-venous anti-biotics! Tina agrees that it is the right thing to do, despite otherwise wanting me to come home. I go downstairs to see and thank Steve for his kindness today and to apologise for the waste of his time this afternoon and evening and they leave for Hurst. I call Daphne and send some text messages to those I had triumphantly told I was coming home. I have to have a new cannula fitted. This does not get done until 11.30pm, at the third painful attempt, when I have one inserted on my right wrist in a rather awkward position. My anti-biotics go in alright and without any pain, but my hand and wrist are uncomfortable all night. I doze on my bed until 2am before tucking down. My blood counts today are - Wbc: 0.56; Neut: 0.23; Lymph: 0.32; Hbn: 8.6; PLT: 42. I do not get a CRP reading on the print out.

Thursday 23rd August 2007

I am up and showered before breakfast, but I have a very uncomfortable time having the anti-biotics through my cannula, which is just over 48 hours old. Time for yet another one. Despite the heat pad Staff Nurse Jinky has no joy getting my blood samples, so Snr. Staff Nurse Malin comes to the rescue fitting a new cannula on my left forearm and getting my blood samples from it. I am blogging at 11.15am. After lunch I am taken to the Nuclear Medicine Unit for a heart scan or “MUGA” to see how strong my heart is. I come out radio active! Tina, Anna and Eva arrive while I am there. We get back to my room, get news that my neutrophils hav gone up a shade to 0.26 and meet up with Steve Devereux, Lara, Kat and a delightful, Professor Duvivier, consultant dermatologist - he of the colourful and flamboyant bow tie! (check title). There ensues a fascinating examination and clinical discussion about my infected thumb, its history and levels of discomfort over the past few weeks. Professor Duvivier is enthusiastic about exploring inside but Steve Devereux is cautious as my low immune system could leave me open for more problems. So it is to be left to see how it progresses. The polite interplay between these two professionals is a joy to witness! Steve then discusses my situation with us and concludes that, with an apparent rising immune system, I can go home. I am to come off intra-venous anti-biotics and on to tablet form, I must watch out for any adverse change in the condition of my thumb and have twice weekly blood tests at Brighton. The transplant can go ahead in about four or five weeks time with the “C mismatch” donor initially identified a couple of months ago. The Hickman line fitting can be put back to nearer the transplant time, I have to have a kidney function check some time in the next 4 weeks and also to see him in his clinic to talk through the detail of the transplant. So it is great news!

My blood results today are - Wbc: 0.51; Neut: 0.26; Lymph: 0.24; Hbn: 8.6; PLT: 39; and CRP: 10.5. My weight is 76 kgs. With my Hbn count at 8.6, I am also to have 2 units of blood. I am later told that there is a new policy that blood can only be given between 9am and 5pm. Considering how, in my past experience, I always seem to be having blood through to the late the evening, I will believe that when I see it! I have a dozy evening.

Wednesday 22nd August 2007

My early morning Merapenam bolus and attendant flushes are uncomfortable again.
However, when it comes to taking my regular blood sample and the 500 ml of blood for Steve Devereux’s research, Staff Nurse Marianita uses the heat pad on my arm and I bleed from the crook of my arm readily and painlessly- at last! My weight is back to 77 kgs this morning, confirmed by an accurate machine later today. At 11am I have a lung function check. It takes more than an hour overall and seems to go pretty well. The analysed results have to be worked out before I find out what they are. Cold soup and lukewarm dinner follow. I hate this 12 midday institutional lunchtime! I hear that Steve Devereux was on the ward and looking for me while I was out! - but I am seen by Dr. Kat anyway. She tells me I have an appointment for the fitting of a Hickman line next Monday and using my time here to have several of the necessary checks, etc. done that are needed in preparation for the transplant, so saving days when the time comes for it. She also tells me the good news that my neutrophils today have gone up to 0.24! This is great news as it is the first time the neutrophils have come off the floor since 6th August -over two weeks ago. I celebrate in the evening with a Guinness while watching England lose 2-1 to Germany at football. I have a visit from Tessa after work which was nice and then I show Staff Nurse Marianita how blunt the needles on the GCSF packs are by a practical demonstration. She agrees with me and will feed this back to the pharmacists. My full blood results today are: Wbc: 0.51; Neut: 0.24; Lymph: 0.25; Hbn: 9.4; PLT: 36; and CRP: 11.3.

Tuesday 21st August 2007

More problems getting blood from me at 7.30am and after one try, it is aborted and not attempted again today. My weight today is up at 79 kgs and I notice I still have plenty of oedema in my legs. I am seen by Dr. Lara after lunch and get the latest thoughts on the possible next moves. We cover the difficulties getting blood samples from me, cannula lifespan, plasma exchange and a femoral line (now less likely), installing a PICC line (unlikely) and installing a Hickman line (most likely) ahead of its need for the bone marrow transplant. So, provided it can be done really soon, the Hickman line would be the answer to both problems of obtaining blood samples and 24 hour cannula lifespans. It transpires that it is not imperative to have blood samples every day and that every other day will suffice. Lara mentions a request from Dr. Devereux for a blood sample for his research work. With the likelihood of my having a residue of Campath in my blood, he wants to use it to help set up a method of measuring and tracking amounts of Campath in the blood over time. She reiterates that he hopes to see me as soon as he can. Tina arrives just in time to come with me while I have an x-ray - a routine procedure for all patients on my ward today.

I contact Dave Lloyd in Sussex Police Welfare giving him some idea about likely forthcoming travel costs for Tina when I am up here with the bone marrow transplant. He will check on Welfare policy and make an application on our behalf. Having contributed for 39 years, it seems reasonable to ask for something back. It will certainly help! I am told that I no longer have to fill in the “liquids - in - and - out” forms, as they don’t really apply to me; but it was good practice for the future. My late evening bolus of Meropenam was quite uncomfortable and had be done very slowly. I am still reading “Rough Crossings”. It is fascinating and very revealing of early 19th vision - and prejudices.

Monday 20th August 2007

My second week starts with feeling rather dozy after my late getting to bed last night - 3am after four hours of blood transfusion. Yesterday’s difficulties getting blood samples from me are repeated this morning with Veronica having three unsuccessful attempts around 7.30am. This was followed by Genette having one try at 11am before making way for Snr Staff Nurse Arlene who gets blood out of the back of my right thumb! - but painfully. This is hopeless. My veins have gone into retreat! If we had known that I would be hospitalised this long then I would have had a PICC line fitted weeks ago. Unfortunately, this was not foreseen as we were going from day to day in the vain (geddit!) hope that “something would turn up” on the neutrophil front. Now we seem to be stuck here trying - as it were - to get blood out of a stone! Oh well, the power of hindsight! Late morning and I get a visit from Dr. Steve Schey telling me that they have concluded the likely explanation for my stubborn neutrophil count is residual Campath in my blood / bone marrow and that they are thinking a way forward would be to give me a plasma transplant. This requires their taking blood from me, siphoning off the plasma content using a clever machine and replacing it with donor plasma. The idea is that hopefully this will get rid of the excess Campath and give me “clear” plasma in return. He opines that otherwise, I could be here for some time what with my infected thumb. He tells me that Steve Devereux wants to talk things through with me this afternoon. In the afternoon I have visits from Steve Bloomfield from the office and Michael, the volunteer helper. Unfortunately it is a “no show” from Steve Devereux. Perhaps tomorrow. My blood results today are - Wbc: 0.45; Neut: 0.18; Lymph: 0.26; Hbn: 9.6; PLT: 34; CRP: 8.4 - and my weight is 77.5 kgs.

At 11pm Snr Staff Nurse Olivia tries to give me my Meropenam but we find that just flushing the cannula is painful, so that’s yet another 24 hour maximum cannula gone. I am re-cannulated in the back of my left hand by the duty doctor and then have the Meropenam, finishing at 12.30am. - another late night!

Transferred to Kings

2007-09-10T10:56:00.000-07:00

Monday 13th to Sunday 19th August 2007

Sunday 19th August 2007

I am 77 kgs yet again today but notice that the fluid in my legs is much reduced. I realise that my only exercise is going down to the shop in the morning to get my newspaper. I resolve that I must do some leg strengthening exercises as my thighs and calves still feel weak. Tina is here at 1pm for a few hours and while here sees the attempts to take a blood sample for type matching as I need to be transfused. Eventually a sample is taken at the sixth attempt - painfully from the inside of the wrist. I am beginning to feel like a pin cushion! My blood results today are - Wbc: 0.4; Neut: 0.13;Lymph: 0.26; Hbn: 7.8; PLT: 37 - hence the need for the transfusion. Father Luke comes to give me Holy Communion and at 7.15pm Jane and Richard turn up for a visit. Somehow they contrived to get here via the south circular, which took them ages. They have never been any good at navigation! - but it was nice to see them. At 9.30pm I am started on the first of the two units of blood I am to have, but my cannula - once again - is not destined to last more than 24 hours. I have to be re-cannulated on the inside of my right arm and it seems to work at first but my vein aches throughout the second unit. I am getting very thin veins! My transfusion finishes at 2.30am and I get to bed at 3am.

Saturday 18th August 2007

I am 77 kgs again today, but I think I still have fluid in my legs to get rid of. I am seen by (Dr) Emma who is pleased with how things are going, despite my neutrophil count being pretty abysmal. My full results are - Wbc: 0.4; Neut: 0.12; Lymph: 0.26;Hbn: 8.5; PLT: 37. The consultants have discussed whether they could give me anything else to aid my neutrophil recovery or reduce the impact of the Campath. I should hear more of that soon. I get a real surprise at lunchtime when, completely out of the blue, Daphne walks in to visit me. It is fantastic! She had to be up about 4.30am this morning to get to Bangor to catch the train. I have to confess to being close to a tear! She is able to stay for three hours before leaving to get her train from Euston. Apparently Tina knew she was coming but kept it a secret. Daphne even text messaged me from the entrance lobby downstairs in reply to my last text to her to make the surprise even greater! That gave me a great lift for the rest of the day. I learn from Michael, the ward volunteer, that the Davidson ward refit will include the provision of wifi. Now that will be good! Yet another cannula doesn’t last and I have another inserted, this time on the back of my left hand - ouch!!

Friday 17th August 2007

My weight is down 2 kgs to 77 kgs this morning and my breakfast medicine cocktail has been reduced from 8 to 2 items. I have excellent news from Lara that the macrophages are no longer in hyper-active mode. The bone marrow is creating red cells, platelets (a bit), but no neutrophils yet and there is no CLL in there. They have still to examine the bone biopsy - or trephine - to confirm no CLL is lurking on the inside of the bone. Steve Devereux thinks that the neutrophils are being suppressed by a residue of Campath in my body. I am told that Campath can remain in the body for ten weeks after the cessation of its use - potentially another six weeks. They want to keep me here to continue giving me anti-biotics for my infected thumb and the thinking is to have the transplant as soon as possible - maybe in two to three weeks. I conclude from this that the timeframe for the transplant is really being dictated by my infected thumb, in that until it is cleared up it is attracting what neutrophils I do have to deal with the infection there. That, combined with the Campath effect stubbornly holding down neutrophil recovery as well, I am wondering what will come first - neutrophil recovery or thumb infection clear-up and how long will this take? Tina is here at 1.30pm for a couple of hours and I then send out “good news” text messages. My blood results today are still not good - Wbc: 0.3; Neut: 0.1; Lymph: 0.19; Hbn: 8.7; PLT: 35; CRP: 14. I am self injecting the GCSF in my thighs in preference to the rather painful injections by the nurses in my upper arms. I am finding the food to be not so good as I remember it from February and the choices more limited compared with the RSCH. It doesn’t take long to run through the options and with the choice of puddings, for example, just two - with no ice cream (!) - it is soon going to get boring.

Thursday 16th August 2007

I am awake at 6.20am for the taking of a blood sample and my anti-biotics. My weight is 79 kgs - no doubt all about excess fluid. I am now entrusted with my own Itroconozole, which I can keeping the fridge to make it as palatable as possible. With the food Tina brought me yesterday, I have a better breakfast this morning - cornflakes, yogurt, honey and cut peach. Since being here I have felt a bit like a prisoner in a cell and I do not feel I have the same freedom of movement I enjoyed down at Brighton. This comes mainly from having to have my door shut all the time. However, I am beginning to feel my feet now and I am able to escape from the ward at 10am to walk down to the shop and buy a newspaper. I have to wear a mask, which I must wear at any time that I leave my room; ward rules - understandable for transplant patients. I still have a lot of fluid on my legs, very noticeable when climbing back up the stairs from the ground floor. Later in the morning I get a visit from Jo. She is in the process of vacating their house in Fulham with the removal / container people in today. She will be taking Jules and Jane with her to Peter and Suzanne’s tomorrow and they fly out to HK next Wednesday. It is lovely to see her before she goes. I have a CT Scan in the afternoon and am then seen by consultant Dr. Steve Schey - pronounced “Sky” - plus Drs Lara and Kat. The current view is that we should watch and wait until anything is identified that needs a response, rather than attempt any further treatment - which might be counter-productive at this stage. I have a visit from Tessa at 5pm and then Father Luke - the “resident” Catholic chaplain - at 7.30pm, as I had requested contact with a priest.

Wednesday 15th August 2007

I have to get the hang of a different regime here, so I wait for things to happen and then I can fit my routine - such as it ever is(!) - into the one in the ward. Breakfast is pretty basic and I just have toast and a very weak tea. We will improve on that tomorrow! I see Dr Lara this morning. Good to see a familiar face from February. My Furosimide dosage is doubled to help sort out the fluid in my legs. I am still amazed how that has happened. I am also introduced to a ward requirement of measuring and recording hourly liquid intake and outtake - with a plastic measuring jug supplied for the latter purpose! Apparently this will be even more important when I am here for my transplant. I get some text messages out letting friends and family know I am up here now. Tina and Matthew arrive at 12.30pm for a visit and have to wear a plastic apron and go through several hand washing rituals. Now that is a very reassuring practice, but not surprising considering the state of health of patients on this ward, struggling with post transplant disease, etc. It seems that, no sooner has Tina and Matthew sat down, the door bursts open and in stomps Tim Godwin, complete with plastic apron - just about fitting him! What a great surprise and how nice. He must have got my text message, checked his diary, sorted out his desk and come straight over from the Yard. We have great chats for about half an hour and then off he dashes. Tina and Matthew stay until about 3.15pm, by which time I have seen Lara again and discuss the need for another bone marrow sample this afternoon. Because I have had lunch I cannot have a proper sedative, but I am given it in tablet form instead. Lara also says that it is difficult to tell yet whether the Vigam has been effective; they also want the sample in order to check for any other infections I may have which could be causing the macrophages to be so overactive. The RSCH slides of last week’s bone marrow sample have not arrived yet. I have my sample taken about 4pm but the sedative does not seem to have any effect, albeit it is not as painful an experience as it has sometimes been. My blood results are - Wbc: 0.61; Neut: 0.14; Lymph: 0.45; Hbn: 9.9; PLT: 32. My weight this morning is 79 kgs.

Tuesday 14th August 2007

I am 78 kgs today - two kgs up from yesterday! I have my early morning anti-biotics and find the cannula is painful just 36 hours after being inserted. I am recannulated later in the morning. I get a morning visit from Jim and he witnesses the fiddly business of having six small bottles of Vigam on the intra-venous drip. My blood results today are -Wbc: 0.4; Neut: 0.0; Lymph: 0.3; Hbn: 9.5; PLT: 25; and CRP: 17. At 2.40pm I am told that there is a bed free at Kings and that I have 30 minutes to pack as a car will be ready to take me there. This is soon changed to an hour as it is decided I should travel in a paramedic ambulance. Not quite sure why, but the crew turn up with a stretcher for me to lie on! We leave the RSCH at 4pm and have a horrendous journey, with the M25 and M23 at standstills due to a turned over lorry. Our maximum two hour journey takes three and a half hours! I arrive at the David Mitchell Unit with enormous fat legs, full of fluid. Did the journey really do that? I certainly don’t recall my legs being up earlier today, although I had put on weight since yesterday. This ward is the specialist ward where I will have my transplant. There is a strict regime for patients and visitors and the first thing I notice is that I don’t feel I can wander about with the freedom I have had in the Haematology ward at the RSCH. I have my own room - no. 12 - but unsurprisingly it is not so spacious as my recent experience. The bathroom certainly is no match, except the floor cannot flood! On the plus side, I have a small fridge, good enough for small drinks, the water jug, pots of yogurt and a few bottles of Guinness. The view is non-existent. I look straight out at the side walls of Davidson ward, about 12 feet away together with its scaffolding, as it is being gutted and completely refurbished. I have blood samples taken at 10.15pm and am checked over by the night duty doctor, Rachel, whom I seem to remember from my time on Davidson ward in February. I think it was Rachel who was very good with the cannula. I have my antibiotics and settle down for the night at midnight.

Monday 13th August 2007

There are no changes in my overall situation although my thumb appears to be slightly better - or is that wishful thinking? My weight is 76 kgs again and my blood results are -Wbc: 0.5; Neut:.0.1; Lymph: 0.4; Hbn: 9.9; PLT: 24; and CRP: 23. We are still waiting for news from Kings on bed availability, but nothing transpires. It is my fifth day on Vigam out of the six days of treatment required and I am wondering what a move to Kings will bring if the treatment for the macrophages has finished. Still I guess it would be good for them to see the problem at first hand. Tina is joined by Anna, Nick and Eva as my only visitors today.

Still in Hospital - And it’s Week 3

2007-09-10T10:50:00.000-07:00

Monday 30th July to Sunday 12th August 2007

Sunday 12th August 2007

A quiet day. Peter’s birthday, the start of the grouse shooting season (as ever!) and we also moved to Hurst 26 years ago today. My weight is 76 kgs, another move upwards. I see Vicky Tindall and we agree that my humb has swollen a bit more. I have a pre-lunch Guinness with Tina and spend the afternoon typing a long overdue update email to Mavis. Unfortunately after well over an hour of painstaking typing, my screen goes dead and I lose the whole email. l had inadvertently not connected to the mains and, concentrating so much on my typing, I have forgotten to keep an eye on the battery icon. So I had to start all over again. But first it was necessary to have a calming down walk around the unit to let the steam out of me. I was livid with myself. My next blood pressure check shows me “high” - and no wonder! My blood results today are - Wbc: 0.5; Neuts and Lymphs - not separately measured; Hbn: 10.5; PLT: 28; and CRP: 29. I am in bed at midnight.

Saturday 11th August 2007

I am 74.5 kgs this morning - an increase of one and a half kilos on yesterday - and signs that my diet together with the Fortijuices are having a positive impact. I have been trying to have one mid morning, mid afternoon and then mid evening. However hard I try I never manage to prise my morning one from the nurses until 11am at the earliest, taking away my appetite for lunch, which is always at 12md - 12.10pm at the latest. This is after a breakfast that I never seem to get until about 8.30am - and which I make very filling with my yogurt, honey, cereal and fresh cut fruit, plus toast. I find out that the food team’s routine delivery ritual is to start at the far end of oncology for breakfast and end with me. But for lunch they start with me and end up at the far end of oncology. Hence the relatively short morning. Why do they do this? I made some long overdue phone calls to Mary Roberts, Nicola Chittenden and Steve Scott. I have an x-ray on my thumb to check that there is no infection gone into the bone, which it hasn’t. At the same time it is confirmed, what I have suspected for some years, that I have some arthritic degeneration in the base joint of the thumb. Nothing new there then! - but helpful nonetheless. Tina visits late afternoon, followed by Anna, Nick and Eva. I have another new cannula fitted in the evening ahead of my Vigam and anti-biotics. I hear there are no beds at Kings yet for tomorrow. Perhaps Monday or Tuesday there will be one. My blood results today are - Wbc: 0.9; Neut: 0.0.; Lymph: 0.8; Hbn: 11.1; PLT: 36; and
CRP: 43.

Friday 10th August 2007

My weight today is 73 kgs - another steady increase. I see Tim Corbett this morning. He has detected excessive macrophage activity in my bone marrow - which is otherwise pretty empty as previously stated. These macrophages are the scavengers in the bone marrow and they get rid of dead cells and the dross in the bone marrow. However they appear to have go beyond their remit and are gobbling up the neutrophils. My analogy is that they are the road sweepers in the bone marrow but have taken it into their heads to go down the street breaking all the windows! He believes this could have been caused by the recent CMV re-activation and the Valganciclovir treatment for it. The clinical term for for the syndrome is Haemophagocytosis - now there’s a mouthful! The treatment suggested by Kings is doses of immuno-globulin (Vigam) given intra-venously. Kings have suggested that I should be transferred up to them so that can keep an eye on me, given that this is a bit of a complication on top of my severe neutropenia. Besides these macrophages have to be back under control before my transplant could go ahead. In the overall scheme of things, my infected thumb appears to be just a sideshow. Having said that, the small scab that had formed over its head has now been washed off. Tina visits at 11.15am and an hour later my blood transfusions start again, with two more units today, making four in all. I get visits from Mia Morris and Linda Bell after lunch. My anti-biotic, Tazocin, is replaced by Meropenam together with Teicoplenin. My Vigam starts at 8pm but is a really fiddly process as it only comes in small bottles and I have to have six of them as one dose, each one taking 30 minutes. My blood counts today are - Wbc: 0.4; Neut: 0.1; Hbn: 9.8; PLT: 35; and CRP: 46. I doze on the bed until 12.50am until tucking down.

Thursday 9th August 2007

It’s Eva’s first birthday! - and as it is Thursday I see Paul Hill today. He tells me that the bone marrow is “empty” - no sign of CLL (good), but no sign of neutrophils either (not so good). Paul believes that Steve Devereux will want to bring forward my transplant and not give me the six weeks break we had planned because of my low immune system. I am due to see Steve Devereux next Friday at his clinic, so I would think more will be revealed then. I am now trusted with the Itroconozole myself as the nurses keep forgetting the timings! As is the norm in hospitals, ward orderlies have to bring a jug of water at breakfast time to every patient, but it is never cold enough for me at the start and gets warmer as the day goes by. So the discovery at last that there is a chilled water machine in the entry lobby to the floor is a great find. At last I can have drinkable cold water! My mouth is now much better and I decide that I don’t need to use the Difflam mouthwash any more. I have a visit from Steve Pitt and then Sr. Peter for Holy Communion. Tina is in to see me about 4.45pm after seeing Nicola Worster, the Haemotology Nurse Specialist, for a helpful chat. My weight today has gone up to 72 kgs and my blood results are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 8.4; PLT: 41; CRP: 70. My haemoglobin level means I am in need of a blood transfusion - four units in fact - and I get the first two units this evening.

Wednesday 8th August 2007

It is a big day for visitors - Hilda and Barry, Bill Swallow, Michel and then Erik and Heather. My 7pm Tazocin is very painful, so I am recannulated after only 24 hours. Tina has a great day in London with Anna and Charrise - a late birthday present. My thumb is changing in appearance, with the crusty head flaking off to leave a very small hole. It is still swollen, red and very tender. I am 71 kgs again today. My blood counts are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 9.1; PLT: 54; and CRP: 74. The CRP reading is a big increase from yesterday and - I guess - reflects the level of infection in my thumb.

Tuesday 7th August 2007

I am 71 kgs today, so perhaps the Fortijuice is starting to work? I see Tim Corbett at 9.30am. He surmises that any neutrophils being produced are going to fight the infection in my thumb and consequently prescribes intra-veinous anti-biotics Tazocin and Teicoplanin to deal with it. He also replaces Omeprazole with Ramitodine, as the former can have immune system suppressing side effects. I am to be here for another 5 days at least to see how this treatment progresses. My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.5; Hbn: 8.4; PLT: 57; and CRP: 33. I am cannulated and have my first doses of Tazocin and Teicoplanin and then go for my Pentamidine nebulizer. This is followed by the taking of a bone marrow sample under a sedative. I hardly knew a thing, wake an hour or so later and doze for the rest of the after. I find out later that I was awake during the whole procedure, even discussing what is going on with Vicki Tindall and the nurses. The effect of the sedative is not to put the patient to sleep, but to wipe out the memory of what is being experienced. How does that happen? I don’t know but it certainly works! I send a text message out to my “health update network” of family and friends and get lots of replies including a great one from Tim Godwin, on holiday in Switzerland.

Monday 6th August 2007

Ros Johnston tells me that my white cell count is 1.3 and we are waiting for the detailed breakdown, which is subject of a manual count. If I have 0.4 neutrophils again I can go! But this is a hopelessly false dawn, because when I eventually get the breakdown - not until 6pm(!) - my neutrophils are back down to 0.1 - damn it! On top of that the white cell count is actually down as well, so where 1.3 came from - who knows. She says that my thumb needs looking at in a few days if I am discharged and may need lancing - ouch!! I have visits from Sarah and Paul and Mia Morris ahead of Tina’s coming at her usual time. My full blood results are - Wbc: 1.0; Neut: 0.1; Lymph: 0.8; Hbn: 10.3; PLT: 73; and CRP: 31. My weight today is still 70 kgs. It has been a fairly tense day waiting for, what I had hoped would be, a successful result, so - in the immortal words of the football team captain losing by a dodgy penalty - I was “gutted”. Where do we go from here? On the positive side, however, my mouth seems to be getting a bit better. I spend the evening reading.

Back in Hospital - Week 2

2007-09-10T09:08:00.000-07:00

Monday 30th July to Sunday 5th August 2007

Sunday 5th August 2007

I have had a little problem with the thumb on my right hand. It has started to redden and swell over recent days on the right side. I seem to recall noticing a small cut there in the early part of the week of my Methylprednisolone and I conclude that it is probably as a result of catching it on a thorn when I did some rose pruning on, I believe, the Monday of that week - despite wearing heavy duty gloves. I have already drawn the consultants’ attention to it as it has started to ache a bit as well as swell. The swelling has now become more clearly defined and the tip - or head - has changed to give the appearance of its being infected. Otherwise there is no change as far as my discussions with Paul Hill are concerned. Sr. Peter calls to give me Holy Communion and meets Tina for the first time. We are then joined by Tony and Pam - which was lovely. I get two days’ blood results at the same time. They are - Wbc: 1.2 and 1.4; Neut: 0.3 and 0.4; Lymph: 0.9 and 1.0; Hbn: 10.8 and 10.5; PLT: 92 and 85; and CRP: 12 and 20. My weight is 70 kgs again.

So great news! An increase in the neutrophil count for each of the last three days. This makes me feel very good, especially after having such a “cheesed - off” week. I can at last see a proverbial light at the end of the tunnel. Afternoon and evening spent reading, dozing and doing Sudoku.

Saturday 4th August 2007

Tina is with me from 11.15am with post and gifts, including a jar of “Life Mel” honey from Evelyn Hole - plus the article in the magazine which gave her the idea of getting some for me. It was extremely successful in getting one person’s immune system back up and running and he out of bed and back on the golf course. She could not have known about my non-existent immune system at the time. How timely and how kind! I am seen by Paul Hill. No change. My weight has stayed the same at 70 kgs.

Friday 3rd August 2007

I am seen by Tim Corbett. As the oedema - and my weight - has reduced so much since my admission he halves my Furosimide dose. He also prescribes a 50% increase in my GCSF dosage in an effort to get my neutrophil count moving upwards. He mentions the possibility of my bone marrow transplant being brought forward because of the potential problem of further neutropenia. I hear news from Peter that Suzanne had a mild heart attack in the night and is now in Darent Valley Hospital at least over the weekend and seeing the cardiologist on Monday. That is a shock! Tina, Anna and Nick visit with Eva.
My blood results today are - Wbc: 1.3; Neut: 0.2; Lymph: 1.0; Hbn: 11.6; PLT: 113; and CRP: 14. My weight is 70 kgs.

Thursday 2nd August 2007

If it’s Thursday, it must be Paul Hill! It’s his day to do the Brighton clinic. My neutrophils are still on the floor and he says that if they are still down there after the weekend then they will have a look see what is happening in the bone marrow. He leaves me with a confident “See you at the weekend”. I have a visit from Jim Rodgers with info on their weekend in Paris, then Sister Peter arrives to give me Holy Communion. It’s a day of visits as I have Peter and Suzanne at 2.30pm., Terry and Les at 4.15pm and then Tina after they have just left. Fortunately my energy levels are high, although I spend the evening in “rest” mode, with bed at 12.30am. My weight today has dropped to 69.5 kgs - which turns out to be the lowest my weight gets. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 10.5; PLT:89; and CRP: 17.

Wednesday 1st August 2007

My weight is 70 kgs again, so it seems to have stabilised at last. Great minds think alike! I am taken off Septrin and I have an appointment next week for a Pentamidine nebulizer. In an effort to turn round my weight loss I have a Fortijuice - from the same stable as Fortifresh but juice based - and a chocolate brownie in the morning. But it is 11am when I have them and I get my lunch at 12.10am prompt(!), so my appetite for lunch is much reduced and I save my pudding to later. I have got to work this one out! As it is Wednesday, Tina is with me from 11.30am today and shares my disappointment that yesterday’s neutrophil count was a false hope. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.2; PLT: 98; and CRP: 12. I finish “Lost Continent” and go on to “Neither Here Nor There”. I have two more Fortijuice drinks through the day. For the first time I am getting really cheesed off over my immune system sticking stubbornly on the floor and nothing much being suggested to shift it. When I was in hospital back in March / April at least I could see the need for it, as I was getting i/v anti-virals and anti-biotics for my chest infection right through the five weeks. But this time I seem to be couped up just waiting for something to happen that might or might not and it’s getting tedious.

Tuesday 31st July 2007

My weight is still 70 kgs. Tim Corbett leads the round today on his first day back from holiday. He checks me over thoroughly, including my mouth. He is not sure that the ulcers may not be viral, but bacterial and wants some swabs taken. He also prescribes me additional anti-biotics - Metronidazole and Augmentin - plus Folic Acid as a vitamin. He remarks on my weight loss of 5 kgs over the past week. Most of that will have been fluid - and I still have a little oedema in my ankles - but also agrees that I will have lost body mass and muscle weight. He also concurs on the possible reasons for the neutrophils being suppressed adding that some of my medications could also be contributing. This made me later recall that Septrin was considered to hinder neutrophil recovery back in February when I was going through a period of neutropenia. I was taken off Septrin and had a Pentamidine nebulizer instead, followed by another one in March when I was in here with CMV.
My blood results today are:
Wbc: 0.8; Neut: 0.2; Lymph: 0.5; Hbn: 12.5; PLT: 138; and CRP: 16. Nurse Clare discusses my nutritional needs with me. I am asked complete a Food Record Chart and she gives me a Fortifresh raspberry flavoured yoghurt style drink to try out. It is 200 ml of thick liquid, contains 300 calories and is quite nice. I have a blackcurrant flavoured one in the evening. Apparently three per day will help build me up quite a bit.

Matthew visits me in the morning, which is great. He is still very busy with the kitchen / dining room but at last is seeing things take shape. Lots of the kitchen is now in place and they have running hot and cold water in there at last! Tina comes in about 4.45pm. She is meeting Marj Holloway in Lewes for something to eat at 7pm. Tina is much relieved to hear that my neutrophil count has gone to 0.2.

Had I not been here in hospital we would have gone today to a meeting of the area CLL Association being held in Hampshire. This is a shame as I think we would have found it helpful. I have now managed to completely catch up with my blog - hurray! - so I resume Lost Continent until bed at 12.20am.

Monday 30th July 2007

I am awake and showered before breakfast for the first time, I think. My weight is 70 kgs - yes 70 kgs! How can this be? I later have a discussion with Ros Johnston who tells me I cannot lose two and a half kilos in 24 hours. I don’t dispute the medical argument but my scales are correct and they are the same ones I have used each day this week. I check my weight on the platform scales in the Day Unit and find no difference. So how is this?

My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.1; PLT: 102; and
CRP: 17. Nurse Miriam, who has been very attentive to my needs, is anxious to ensure that my hip abrasion has not worsened, so she checks it and replaces the dressing. She also wants to refer me to the nutritionist because of my weight loss. I agree. I have a visit from Derek Oakensen is the afternoon. He updates me on the latest with his redundancy saga. Fascinatingly awful! Tina comes in at 4.30pm. She has been in touch with Vikki Bevan for a chat about things. While she goes to buy a coffee down in the shop, Vikki calls on her mobile and I take it. Steve Devereux reckons my neutrophils are being suppressed by the after effects of taking the Valganciclovir, coupled with a cumulative effect of the Campath. She just wanted to give Tina some reassurance on that.

Back in Hospital Yet Again

2007-09-10T09:01:00.000-07:00

Saturday 21st to Sunday 29th July 2007

Sunday 29th July 2007

My weight today is 72.5 kgs and my blood results are given to me as: Wbc: 0.5;
Neut: 0.0; Hbn: 11.7; PLT: 90; and CRP: 22. I have a very quick visit from Ros Johnston and later Sister Peter gives me Holy Communion. She is a delight! Tina is here at midday and then leaves for Matthew’s to give the girlies a walk out to the park. I spend the rest of the day reading and resting.

Saturday 28th July 2007

My weight this morning is 73 kgs and today’s blood results are Wbc: 0.7; Neut: 0.1; Lymph: 0.5; Hbn: 11.7; PLT: 92; and CRP: 32. I am seen by Ros Johnston at 9am - no change. My hip abrasion has reddened and may have a slight infection there. My walk back from the newspaper shop is really hard again. I really need to strengthen my legs a lot. Tina visits at 12.30pm. I spend the afternoon reading and blogging. I am visited by Michel Olsziewski in the early evening. I finish “Bury My Heart at Wounded Knee” and move on to something less dramatic, “Lost Continent” by Bill Bryson. This was the first Bryson I ever read - when we were in New Zealand back in 1995.

Friday 27th July 2007

I am awake at 6.15am again and have my blood results by 9.15am - a record! They are Wbc: 0.5; Neut: 0.1; Lymph: 0.3; Hbn: 10.8; PLT: 68. I see John Duncan at 10.15am. He says stop the Tazocin and go on to Ciprofloxacin tablets, but no real change in my status. I have a visit from Vincent Meagher in the afternoon and then Tina is with me for an hour or so. I have an evening visit from Fr David Foley, after I eventually remembered
to call him. Sr Peter will come on Sunday. I read for the rest of the evening and get to bed at 12.30am.

Thursday 26th July 2007

I am awake at 6.15am and feeling good on the strength of three units of blood. My fourth unit is started at 7am. My weight this morning is 73.5 kgs. I am seen by Paul Hill. He states the same as John Duncan. I am profoundly neutropenic and they want to see a rise in the neutrophils before I can be discharged. He will query with Steve Devereux whether there is a need to complete the final four doses in the Campath course, given the likelihood they would probably suppress the neutrophils yet again and cause more trouble than it is worth. I have visits from Jim Rodgers and Bill Swallow. They are both suitably impressed by my surroundings! My blood results are: Wbc: 0.5; Neut: 0.2; Lymph 0.2; Hbn: 11.9; PLT: 72; and CRP: 26. My mouth has become worse with another ulcer on my gum and the overall soreness still very much there. The Tour de France has dissolved into chaos and farce with both the tour favourite - Vinokourov - plus his whole team, the Yellow Jersey, Rasmussen, and another team being kicked off for drugs violations. I doze the evening away from 9.30pm to 1am before going to bed.

Wednesday 25th July 2007

I am awake at 5.45am and reading. “Bury My Heart at Wounded Knee” is compelling
reading but immensely sad. I am 73 kgs today. I am seen by John Duncan. The GCSF and Tazocin anti-biotic are to continue. I will have to stay until my neutrophils show significant signs of improvement and there is no clear indication how long that might take. If I escape by the weekend, it may be a bonus. Doh! I mention some scratch marks on my hip which I must have done one night earlier on in this time in hospital. I am to have it dressed to avoid possible infection. There is no newspaper trolley service up here - which seems a great pity - so I walk down to the shop right at the front of the hospital. The walk back is a slog at it is all up stairs and steps. However, I need to get some strength back into my legs, so I guess it is good for me. I buy a small Lucozade - original flavour - as my mouth is tasting grotty. It doesn’t work for me. Tina arrives at 4pm and - “surprise, surprise” - she has got her camera back courtesy of Inspector Vanholme of the Ghent Police. Isn’t that brilliant! After waiting all day, at last my blood transfusion starts at 4.30pm. I receive three units by 12.30am and we stop for the night. My blood results today are: Wbc: 0.5; Neut: 0.0; Hbn: 8.6; and PLT: 63.

Tuesday 24th July 2007

We have a bright morning. My weight is 74 kgs still. I am seen by Panos. They want to keep me in until Thursday at least to see my CRP and CMV go down, especially with such a low white cell count. They will also be moving me to the Haematology Ward as they have a bed free at last. Tina arrives at 4.30pm and at the same time we learn that I have a “zero” CMV result - yippee! So stop the Valganciclovir and resume Aciclovir. At 6pm I am trundled up to Haematology on the 9th floor of the Millennium Wing - a floor above the Day Unit. I am now in the lap of luxury. I have my own room, complete with toilet and shower, plenty of space, air conditioning and a window facing north so the room temperature is good. This one of only six beds on the Haematology Ward, hence the pressure on beds previously. I get my blood results from a very helpful Staff Nurse Jason; they are: Wbc: 0.4; Neut: 0.0; Hbn: 8.2; PLT: 52; and CRP: 36. At last I am able to get my blood results in full on a daily basis without feeling I am stealing the crown jewels. It is my blood after all! I am being lined up for four units of blood tomorrow. I read and doze to 1am and then sleep well.

Monday 23rd July 2007

I sleep quite well despite my neighbour and am awake at 6.15am. I go and get my Itroconazole and am given my early dose of Tazocin. I am now comfortable walking without a zimmer. I get a new cannula inserted on my right elbow and have a visit from the ward pharmacist to run through my medications as there has been some slight confusion with the ward staff. I find this quite reassuring as I am on a ward where the staff are unfamiliar with my medical condition etc. My weight today is 74 kgs. I am seen by Ros Johnston and the team. I do not get the full details - again - but my Wbc is 0.7, I have no Europhiles, my CRP is 75 and they have received a CMV reading of 153 - down significantly from the initial 6955! The likelihood is continue with the Tazocin for two more days and then we can resume the Campath to finish the programme. I have a visit from Anna and Eva at 1.30pm - just back from Salzburg. The Staff Nurse advises not a good idea having Eva here as there is diarrhoea on the ward. Now they tell me! I ring the Clinical Trials team at Kings to warn them that I will not be finished my Campath in time for the final staging tests scheduled for a week’s time. Tina comes in at 4.30pm. It is raining! At least that keeps the temperature down in the room - and gives the seagulls outside a bit of a soaking. They queue up by the window to be fed by my neighbour’s visitors!

Sunday 22nd July 2007

I am awake at 2am after a distressing dream about Tina - more Methylpred side effects I guess - and very upsetting. I manage to get back to sleep and go through to 6am but have a sweaty episode in the middle of it. The staff nurses on the ward have taken the easy route with my medications and have left it all to me. This partly because some of the items written up on my admission record by the doctor yesterday are incorrect and it has confused them. The pain and movement in my legs seem to be getting a bit better already and the fluid content also appears to have reduced. My weight is still 75 kgs today. Tina and Matthew arrive about the same time - 11.45am, but at the same time as the porter comes to take me for my x-ray, so they go for a coffee. The x-ray takes longer than expected and it is time for lunch when I get back, so I don’t have much time with them.

Shortly after that I see Paul Hill. My Wbc is 0.5, my neutrophils are none existent, my Hbn: 8.8 and my CRP is 139. He tells me that I need a blood transfusion tomorrow. My temperature is still a little high in the morning - 37.3 - but drops to 36 when checked later. At 4.30pm I am moved from the large ward to a side ward containing three beds. It is like a greenhouse as it faces south and west and the sun has been out all day! But hey - at least I am out of the madhouse, although you wouldn’t know it with the fellow in the bed next to me! He is coughing and spluttering day and night and calling out “Nurse” all the time as well! Before Tina goes I have the bright idea that I should get a £3.50 card to watch the Grand Prix -and maybe something else - on the Patient Line TV. What a rip off and what a waste if time and effort. I get no response from the TV and it takes half an hour to find out that the TV cannot read the card have inserted. By the time someone comes to fix it, the race is almost over! I get my money back instead and revert to reading. I finish “Small Island“ and start “Bury My Heart and Wounded Knee” by Dee Brown.

Saturday 21st July 2007

Here I am in Catherine James ward for an indeterminate length of time. It is a ward for men with respiratory problems. I am in a room of seven beds with five men clearly over 80 years and most looking rather poorly. The other patient has the most severe problems and seems to only know one word - “nurse“ - day and night! The strength in my legs has gone so much that I have to use a zimmer frame to get to the toilet out in the corridor. I even have to resort to a commode on one occasion! My lack of dignity knows no bounds!

Having had my first dose of Tazocin at 6pm Friday the ward doesn’t get its act together for my second dose until 1045am Saturday - and I was supposed to have it every six hours. Paul Hill is the weekend consultant and I manage to elicit from him my blood results from him, as none of the ward nurses are allowed access to such information from the hospital computer system. Would you believe that? Anyway they are: Wbc: 0.8; Neut: 0.3; Hbn: 9.2; PLT: 52; and CRP 229. So I am rather seriously neutropenic. My weight today is 75 kgs. Tina finds the ward more depressing than I do, but it is really rather crummy. I quickly find I am getting fed with being called “Dear” and “My darling” by nurses and phlebotomists and I bite back, both politely and somewhat more vigorously. In my personal experience, women have been patronised by men, especially policeMEN, for generations. Having now rid themselves of much of that stereotyping through 30+ years of equality policies etc., I find it amazing that it should be perpetuated in the opposite direction, through lack of thought I am sure. Consider that the rules on one ward I have been in this year state very clearly that each patient is an individual and should be respected as such. STOP! Get off the soapbox - lecture over!

More Agonies of “Withdrawal” from the Methylpredisolone

2007-09-10T08:59:00.000-07:00

Week of 16th to Friday 20th July 2007

This week saw the effects of the Methylpredisolone gradually return in similar fashion to last month. Pains started in my left leg from Monday night and then took in my right leg. It progressively worsened until Friday morning when both legs from thigh to ankle were aching and I could hardly get out of bed. Taking Ibroprofen made no difference and what effect the predisolone had I cannot tell. If it reduced the pain at all, then I am glad I had it, because any more pain would have been horrendous! Surprisingly I managed to get a reasonable night’s sleep most nights. I was reading for an hour or so from 11pm, rather than waking up and reading at 3am. That had stopped by the previous Sunday night. On one or two nights I had rather weird dreams with violent undertones. They were also very vivid once I had woken up. I seem to recall this phenomenon occurred previously and assume it is a side effect of the Methylprednisolone - most unpleasant. Each morning was a long, slow start, often not breakfasted, showered and dressed until 11am. I was doing everything in slow motion! - particularly getting upstairs. Strangely, I did not feel compelled to have a sleep every afternoon, although I tried to have time with my legs up as they were filling up with fluid as expected. I had the same lunch each day - soup, Ryvita with pastrami and lettuce - and enjoyed it, whereas breakfast was still a struggle. I also enjoyed my dinners this week more than last and found a pre-dinner drink better also - especially the Belgian Carmelite beers! Wine tasted odd, even the white.

I had blood tests at the RSCH Monday and Thursday and got down a bit late both times as it was hard going to get myself moving. My weight was 77.6 and 77 kgs. My blood results were: Wbc: 3.6 and 1.9; Neut: 3.4 and 1.1; Lymph:0.1 and 0.5; Hbn: 11.1 and 9.9;
and PLT: 117 and 66. So I am injecting GCSF every other day, following the days I have the Campath.

My mobility is so bad by Friday morning I decide to stay in bed. I cannot get my legs into the bath to have a shower! They are also full of fluid. Tina brings me my breakfast to the bedroom and she doesn’t go to work as it looks as if I may end up being admitted to hospital yet again. I keep a watch on my temperature, which varies from 37.0 to 37.9 and I call Laura in the Day Unit a couple of times for advice. By 3pm my temperature is back to 37.9 and I tell Laura that I am coming in. I get down to the Day Unit at 4.20pm. I have a blood test, am seen by a locum doctor who was with the team when I was seen yesterday and am admitted. I have a bolus injection of Tazocin at 6pm and am wheeled down to Catherine James ward by 6.40pm. My GCSF injections are changed to daily and my Campath is suspended. I get scant information on my blood result for today except that my CRP reading is 223.

The Last Session of Methylprednisolone - Hurray.

2007-09-10T08:52:00.000-07:00

Week of 9th to 15th July 2007

Thanks to Jim - twice- and Terry and Les, I have help with transport for three sessions and Tina takes me on Wednesday and Friday. I feel woozy, weary and progressively heavy legged as the week goes on and sleep at least two hours every afternoon. I struggle eating my breakfasts, but enjoy my lunches, which are soup, followed mostly by Ryvita with ham or pastrami and salad, despite my sore gums and mouth ulcers! I try a hot chocolate with a Jaffa cake on Monday afternoon after my sleep, but by 7pm I am feeling decidedly queezy and am sick. That is actually the very first time I have been sick since I started my treatment, despite several times being close. So no hot chocolate for a while! As a result of that experience, I start taking Metoclopromide before each meal and it seems to work. I don’t really enjoy my dinners this week and keep to fairly small portions, although Tina tries to get more into me! The goats cheese and tomato pie is tasty and works well, but my appetite is not great.

My weight varies between 73 and 76.2 kgs through the week with no logic from day to day. I am using the weighing platform each time, so find it really odd that there should be such differences day to day. For example on Wednesday I am 73 kgs but on Thursday I am 75.4 - an increase of 2.4 kgs. My blood results on Monday and Thursday are:
Wbc: 4.2 and 7.6; Neut: 3.5 and 7.2; Lymph: 0.5 and 0.6; Hbn: 10.7 and 10.3; and
PLT: 133 and 168. By Friday I am feeling generally pretty lousy and sorry for myself, with my legs also starting to fill out with fluid. I then get a call from Tim Corbett with news that Kings have identified another CMV reactivation. Fortunately, the reading is 6955, not up in the skies like last time. The decided treatment is 900 mgs twice daily of the anti-viral tablet Valganciclovir for the next 21 days and drop the Aciclovir I am taking No admission into hospital is needed unless the CMV readings rise.

The Methylprednisolone effect is soon upon me as far as sleep pattern is concerned. I am awake at 3am Saturday morning and thirsty, bearing in mind I am only happy drinking very cold water at the moment. I am awake again at 4am and read until 7am (so I am getting back into “Small Island” by Andrea Levy). I then sleep on to 9.30am while Tina went into work. I just about manage a late breakfast and then spend the rest of the morning in the lounge with my legs up, catching up on some old TV recordings, resting and feeling tired and lousy. I recover enough by 2pm to have my usual lunch and then have a good two hours sleep until Tina comes home from work. I don’t feel like dinner until quite late. We are sitting down at 9.30pm. It ok for me but far too late for Tina, bearing in mind she has been at work all day. I cannot help it though. It is the Methylpred. and my body clock!

That night I am awake and reading again between 3am and 5am, but then sleep on until 9.45am. We have a morning visit from Lynn Ross and by 1.30pm I am upstairs asleep. Then it is a 3pm lunch, more resting and sleep for me in the afternoon and 8.30pm dinner.
As expected the Spanish pork casserole works a treat! However, I find no great taste in the little French beer or the fresh cherries, although Tina says they are really nice.

I start the course of prednisolone tablets on Saturday with 70 mgs (14 tablets). Each day the dosage reduces by 10 mgs until I reach two days of 10 mgs and 5 mgs respectively, making a total of nine days.

“Make the Best of the Weekend - the Methylpred is Next Week”

2007-09-10T08:49:00.000-07:00

Friday 6th to Sunday 8th July 2007

I go down for my blood test on Friday to find that I have lost over 2 kgs despite all the food consumed in the week - I am 73.2 kgs. My results are: Wbc: 8.2; Neut: 7.5; Lymph: 0.5;
Hbn: 10.8; and PLT: 129. I see Tm Corbett about my mouth ulcers and a rather painful swelling on the back of my hand where I had had a cannula some weeks earlier. He prescribes me a short course of anti-biotics to prevent any possible infection, some anaesthetic mouthwash (Difflam) and increasing the Aciclovir from 3 tablets to five times daily. The lump on the hand is probably a small thrombosis and he says it will go away naturally in time. I have two hours sleep in the afternoon, during which Vikki Bevan leaves a message on the answer phone that my Methylprednisolone next week will have to be the usual dosage - to comply with the clinical trial protocol - but that I will have a nine day course of prednisolone tablets starting on the Saturday following to help wean me off the high dosage steroids and hopefully reduce the possibility of the muscle wastages withdrawal symptoms I experienced last time. Hope it works!
The “birthday” balloon ride I had arranged for Tina for Saturday evening unfortunately was cancelled at the last moment. It was a very nice, clear evening and we would have had superb views, but the wind was too strong. So we have to arrange it for another day. We go to Worthing on Sunday morning and drop in at the end of Lily’s 4th birthday party - mayhem! - and then back to Matthew’s to see how the kitchen / dining room re-construction is going. They have been in chaos for weeks.

A Break in Ghent

2007-09-08T11:27:00.000-07:00

Sunday 1st to Thursday 5th July 2007

At fairly short notice we managed to book ourselves a Ghent city centre B & B for four nights to celebrate Tina’s 60th. There is no point trying to look long term with anything because of the vagaries of my condition and my responses to treatment, but I wanted to make sure Tina’s special day did not pass by unnoticed. Ghent is like Bruges without the “chocolate box” prettiness or image, but it is full of wonderful old Flemish style buildings. It has an industrial past and a much more lived-in feel.

We have a superb B & B on one of the ancient streets with the Stadhuis at one end. We are walking distance from everything, but the rain contrives to limit our wanderings somewhat. It is torrential at times, forcing us to spend a lot of time in bars and restaurants! We have some excellent meals in extremely trendy restaurants and sample the wonderful Belgian beers. I find the days a bit tiring, so we found ourselves back in our room late afternoon for me to have a couple of hours lie down. Also I find that I have started getting mouth ulcers, which detracts from my enjoyment of the lovely food. After four and a half years, I guess the effectiveness of my prophelactic medication is wearing a bit thin. Of course I didn’t bring any Adcortyl or similar, so I have to grin and bear it.

Unfortunately, Tina loses her camera on our second night out and it also transpires that my camera has a fault. So we end up with only a few photographs to remind ourselves of the trip. The good news is that after reporting the loss to the Ghent police, two weeks later it arrives in the post! The honest Belgians show us the way!!

Of course I have to keep the Campath injections going, but without a blood test until Friday, I have no idea whether my bloods are up or down, so I also inject with GCSF to be on the safe side. We are back home Thursday via a big shopping session in Calais and a ferry bursting with noisy school kids.

A Quiet Week

2007-09-08T11:24:00.000-07:00

Week of 25th to 30th June 2007

I spend this week just ticking over and resting afternoons. Went down to the Day Unit at the RSCH for blood tests both Tuesday and Friday mornings. No problems for me driving this week, so on those days I am up quite early to get Tina to work en route to Brighton. My blood results are ok - Wbc: 2.7 and 5.3; Neut: 2.4 and 4.7; Lymph: 0.3 and 0.5; Hbn: 10.6 and 10.8; and PLT: 159 and 108. My weight moved from 74.2 kgs to 75.6 - I don’t know why, other than I may still have fluid in my legs. I have visits from Tony Collins and Bill Swallow and Anna, Nick and Eva come down on Tuesday from Mull ahead of driving to Salzburg at the weekend on one of their assignments.

Mid Treatment Programme Tests and Consultation

2007-09-08T11:15:00.000-07:00

Friday 22nd June 2007

Back to KCH for my consultation with Dr Steve Devereux, having done my Campath injection before leaving for London. Whilst waiting we catch up with Danny and Donna - which is nice - and exchange email addresses. Danny gives me permission to mention his name in my blog. Steve Devereux shows his delight in my CT scan results. Apparently, the team’s response was something like, “Wow, look at that. There’s nothing there!” This is great news. My blood results today are also good - Wbc: 10.4; Hbn: 11.4; PLT: 207; Neut: 9.4; Lymph: 0.87. It is probably too soon after my injection for any Campath effect to reflect in the results. There is no change of news on the donor front - they have one preferred “C Mismatch” donor. But there is still time and the searches will continue in case they are able to find a closer match. I forget to ask if my next Methylprednisilone dosage will be reduced - as Paul Hill had mooted. I hope to find out later. I will continue to take my Campath every week for the next five weeks, including the week we have planned away in Ghent for Tina’s birthday. However, the week for the Methylpred will slide back to the week of 9th July. The whole programme will end on Friday 27th July, provided we have no interruptions for infections, myopathy or whatever. Meanwhile I have “end-of-programme” tests arranged for Monday 30th July and a next appointment with Steve Devereux on Friday 17th August. So everything looks fine for a transplant about mid September. That evening, despite glowering clouds, we join Stephen, Sue and friends in an open air operatic evening of Carmen at Middleton Manor. We are well prepared for a cool and wet evening and are not disappointed, with a steady down pouring for the last 15 minutes!

Week of 18th to 24th June 2007

Well it seemed a good idea to stay over Sunday night and go early on Monday morning direct from Leicestershire down to London for my day of tests, etc. at Kings, but in the event it was horrendous! We thought we had left in good time - just after 7am - but what with heavy traffic and accidents on the A14 and M11, we eventually arrive at KCH at 11.45am - well over an hour late. At least the A12 route through to the Blackwall Tunnel is easy! My tests today are blood counts, bone marrow, an ECG and a CT scan. Today does not run smoothly. The usual routine is to get my blood sample done first. I wait about 40 minutes without being called - which has never happened before - only to find that one of the receptionists had put my “Urgent” blood sample request in the wrong place! Doh!! My bone marrow sample is taken by Dr Waseem - it never gets any better! I then find that the CT scan is not scheduled for today at all, but for ten days time. By a combination of charm and insistence we manage to persuade the lady in charge of the CT team to fit me in today. Fortunately the ECG is done immediately and we leave after a late sandwich lunch. I inject my Campath when I get home from London and I get my blood results on Tuesday; they show that I am neutropenic and I guess I probably have been all over the weekend as well(!) - Wbc: 1.35; Hbn: 11.5; PLT: 209; Neut: 0.81; and Lymph: 0.5. - so GCSF straight away! I arrange for an additional blood test at the RSCH on Wednesday morning to make sure I on the right track with taking my Campath and GCSF. My counts have bounced back again - Wbc: 6.1; Hbn: 10.5; PLT: 147; Neut: 5.5; Lymph: 0.4. We have a nice evening at Cath and Jim’s for dinner of a splendid Spanish pork casserole - my current favourite! - but had put them on notice on Tuesday that I may turn up neutropenic! Fortunately that is not how it turns out. I pass on the GCSF injection on Thursday on the strength of my blood results, but have one on Saturday as a precaution. I have an easy Saturday and sleep for a couple of hours in the afternoon, before we go out to Norma Elder’s surprise 80th birthday celebrations - really nice. On Sunday we leave Mass at 11.15am and make haste to Cranbrook to meet up with Tony and Pam for Sunday lunch at the George Hotel. Great to meet up with them again and enjoy a good meal. I am dozy as Tina drives home and I have over two hours sleep when we get home - from about 6.45pm. I still have a good night’s sleep on top of that !

Back into Hospital with Muscle Wastage and an Infection

2007-06-15T01:41:00.000-07:00

Week of 4th to 10th June 2007

I am catching up more than two weeks late for reasons which will unfold in the following entries. On Monday I am feeling even more weary than yesterday as if I am anaemic. I am drinking plenty of iced water and my appetite is ‘so- so’. I go for a blood test at the RSCH on Tuesday. My weight is 77.6 kgs. This absolutely correct as - for the first time - I use the large weighing machine in the Day Unit rather than the bathroom scales in the toilets. My blood results are good: Wbc: 5.1; Hbn: 12.3; PLT: 102; Neut: 4.9; Lymph: 0.1 - and show that I am not anaemic. So I ask to be checked over for my aching legs but Panos finds nothing to explain what is happening. Tuesday night is really bad, I wake with pain in my thighs and can hardly walk. I call Steve Devereux who thinks it could be myopathy (muscle wastage) as a result of the Methylpred. He tells me to get down to the RSCH for them to check it out again. I am seen by Panos and Tim Corbett and another blood test shows something that might explain the problem. (This turns out to be a CRP reading of 128 which I only get to hear about two days later.) I am admitted there and then but have an injection of Tazocin before leaving the Day Unit. I am feeling lousy, look appalling, cannot walk without extreme pain and we don’t know why. So I am back to Howard 2 ward via an MRI scan with a porter pushing me there in a wheelchair, renewing acquaintances after a ten week interlude! Tina has been with me since collecting me from home at 10.30pm. It has been a rotten day for her, obviously she is very anxious, but eventually she has to go home. I have a temperature check at 6.30pm and it is 38.2c - fever pitch! Later that evening I have a big sweat, soaking my T shirt right through. This is not good!! I have a fitful night and any leg movement is very painful. Shuffling to the toilet is a nightmare.

I am seen next day by Paul Hill, during Matthew‘s visit. My left thigh is now less painful than my right and he believes I have muscle wastage (sympathy) as a consequence of the dosage of Methylprednisolone. The infection is thought to be coincidental and not likely to be connected to the muscle problem. I am to have 48 hours of Tazocin. My blood results are good, but my CRP is now 172. By the time Tina comes to see me late afternoon, things are starting to make a bit more sense. Thursday night I have a better night’s sleep and when Tina rings me in the morning, I can move my legs about without pain! - although walking is still very difficult and makes my thighs hurt. My late morning consultant’s visit - the new Dr. Ros Johnston - is positive. Await a turn down in the CRP level, move on to Ciprofloxin and expect to be discharged soonest afterwards. My blood results today are: Wbc: 3.3; Hbn: 10.4; PLT: 82; Neut: 3.0; Lymph: 0.2; CRP: 90. My weight is 76.5 kgs. Although I have a restless Friday night, I am much improved by Saturday morning, but have to wait for Paul Hill to see me prior to discharge. He does not know what the infection was, but is satisfied that the muscle problem was caused by the Methylpred. He will discuss with Steve Devereux whether the dosage should be reduced next time, provided it is allowed within the protocol. It is decided that I should resume my Campath on Wednesday, so that I have lost exactly one week from the programme by this little episode. I will have blood tests twice weekly to keep track of my Neutrophil counts in case I become neutropenic or need to take GCSF - this applies if my count is 2.0 or less. He advises me to do simple exercises as I need to strengthen my thigh muscles - lifting up my leg with a bag of frozen peas balanced on my foot. In fact I use our beanbag door stop; it is slightly heavier. Tina collects me, I say my farewells once more to Howard 2 ward and I leave about 2pm. I spend Sunday in recovery mode!

Although it has done its job in the blood and lymph glands, my three lots of Methylprednisolone have each been accompanied - followed - by very unpleasant side effects or similar. The first session decimated my tastebuds and appetite for at least two weeks. The second session was followed by five weeks in hospital with the chest infection and CMV; and now the myopathy and another infection with this the third session. Not so good, is it?

Session 3 of Methylprednisolone

2007-06-15T01:39:00.000-07:00

Week of 28th May to 3rd June 2007

As this week starts with a Bank Holiday, I am having my Methylprednisolone from Monday through to Saturday, as well as giving myself my three days of Campath. I had to remind myself what the steroid dosage is; 2 grams in 250 ml of saline solution - a hefty dosage - or ‘industrial quantities’ as Steve Devereux puts it! It is also eight weeks since the last lot rather than the four weeks it should have been, so will that make any difference? The week goes quite well. I feel tired most afternoons and have one or two hours sleep each day. I also have that strange dulled vision that comes with Methylpred. - as if my specs need cleaning. On Tuesday I felt quite light headed and on Saturday, a bit sickly. On the other hand I had a pint with Jim on Wednesday and lunch with Keith at the Royal Oak on Thursday, followed by a visit to the farm barn conversion they are having in Henfield. I also had to change a wheel on the A27 coming home on Saturday as we had a complete blow-out and shredded tyre - really annoying after just 2400 miles. So that was a test of my energy levels. Needless to say I was very tired afterwards and had a good sleep in the afternoon. As the week progressed so my taste buds started to be affected, with the taste of some things being altered more than others. But the good news is that my overall appetite seemed to hold up ok. But I found that I want Metoclopromide to ensure I don’t feel nauseous and I ask for a spray to deal with a dry mouth. My weight hovers around 76 kgs all week but whilst my Hbn is 10.4 across three blood tests and my PLTs average 142, my Wbc went from 1.2 to 6.1 and 5.7 and my Neutrophils from 1.0 to 5.3 and 5.0! I am told this is the Methylpred.

Our computer decides to die this week. Not only that, but it is giving off a nasty smell. We get a local PC engineer to have a look at it and he is able to remove most of the data files, but stops short of email and its address book - which is a right pain. Here’s hoping he can sort those out as well. It has been a real frustration these past two months as I have been off email all that time and recently Tina’s went down as well. Meanwhile we decide to use my brand new laptop as our main PC, complete with WiFi, bells and whistles.

I get an interesting call from Paul Hill telling me that the Health Trust’s legal person has viewed my blog and pointed out that I have referred to fellow patients by name. This contravenes the Data Protection Act apparently and I am asked to remove them. I suppose if I had got their permission, it would have been alright - shame really. On Sunday I am feeling really weary and my legs are aching. My food is just about ok. I am not enjoying my breakfasts now and my Saturday and Sunday dinners have been good only because it’s Spanish pork casserole.

Great News from the Donor Search

2007-05-26T09:17:00.000-07:00

Friday 25th May 2007

We are up to Kings by 10.30am and after having my blood test are soon seeing Andre Jansen, the transplant co-ordinator, to get some insight into the donor search process. I wanted to include some information about this on to my cll blog as it may be of some use to others in a similar predicament. The big news is that the Anthony Nolan Trust has identified four potential donors for me, with the possibility of two more. These are described as “C” code mismatches. The search entails comparing my blood with batches of six others against about 250 identification features or “codes” within the blood cell make-up. A “C” code mismatch is where more than 230 codes match, including all the key ones. If nothing better is found then a “C” code mismatch would be “adequate” for a transplant. The prospective donor is then asked to give a blood sample for health screening and subject to his or her agreement, the stem cell harvesting can go ahead, either at Kings or in the donor’s home country if he or she comes from a long way away. Steve Devereux is upbeat about things. I have no detectable enlarged lymph nodes, although the March CT scan showed that I had some in my abdomen. My blood results today are also pretty good: Wbc: 0.9; Hbn: 10.7; PLT: 184; Neut: 0.8; Lymph: 0.1. However my iron levels are rather low and he will request the RSCH monitor them over the weeks to come. My weight today is 75.3 kgs. and blood pressure 152/77. He wants me to continue with the remaining eight weeks of the treatment programme to get my bone marrow in the best possible state for the transplant. It now appears that the most likely time for CMV to emerge is within the first four to six weeks of treatment, with a lesser chance of a recurrence after that. So CMV may not be as much a problem as earlier thought and Methylprednisolone is not expected to drive down the white cell count any further. We are now exactly half way through the 16 weeks of the clinical trial treatment programme, so it is time again for intermediate progress checks. I will have to return to Kings in just over a week’s time for a CT scan and a bone marrow sample - ugh deep joy! But the other good news from today is that my “clean” diet does not mean I cannot drink draught beer. We mentioned it in passing to Steve Devereux and he could not understand why it was on the list of things to avoid - so I was able to celebrate the all round good news at lunch at the Sun and Doves with a pint of Old Speckled Hen! We shared our good news with Anna and Matthew over the telephone and text messages went out to sisters and brothers. This has been the best day we have had for months and the best news I have entered on my chronic lymphocytic leukaemia blog since I started it.

Week of 21st to 28th May 2007

I start the week with my Campath injection and then call Jonathan Samuel to discuss that he check with Steve Devereux that I will need my Campath supply topped up when I go up to Kings on Friday. I also make an appointment for Friday with Andre Jansen to talk about the bone marrow donor search. I have my weekly blood test at the RSCH on Tuesday. The results are good: Wbc:1.0; Hbn: 11.4; PLT: 168; Neut: 0.8; Lymph 0.1; my weight is 75 kgs. and my sodium levels are back to normal! I make provisional arrangements for the Methylprednisolone sessions for next week. That day Anna calls from France to tell us that they are approaching Dieppe at the end of their drive up from Greece, but that she has a sore throat and a cough - so they cannot come to us to stay, which is a shame. However, as the weather is so good, we later arrange to meet up for a later afternoon picnic at the Jack and Jill. That way we see each other, but with Anna sitting “down wind”, should manage to avoid any nasties being transferred to me! We are the centre of attention for ten rather large horses, of the Cob variety, who wanted to join us eating the food! It is Thursday and unfortunately, due to my neutropenia I have to cancel going to the ex-CSD gathering at Lewes to mark Chris Pascoe’s retirement. I hope to catch up with him later. Instead I spend Thursday dibbling in the back garden and fixing up a window box outside the kitchen window. I am feeling very good in myself and have no effect from the Campath, other than possibly being a little tired on “Campath days”. On Saturday we have visits from Peter Felchlin en route from L.A. to the Scottish golf courses, Anna with Eva - going up to Mull themselves on Sunday - and Matthew with Ella, who is staying with us until Monday. The good weather has gone, the clouds are heavy and the temperature has dropped at least 5 Celsius. Typical for a Bank Holiday!

Campath Resumed

2007-05-21T09:56:00.000-07:00

Week of 14th to 20th May 2007

This week starts with Tina and my going to Thanet for the funeral of my Aunt Winnie - the last of my Mum’s family of seven sisters and three brothers. She was 89, but had not been well of late. Often crematorium services can be rather dour, depressing affairs, but Win’s was a good one, befitting her cheerful disposition. Her coffin entered to “String of Pearls” and left to “Tea for Two Cha - Cha -Cha” - she so loved dancing! It was great to see cousins and second cousins - some for the first time in 40 or 50 years! Had I known what my blood test the next day told me, I should not have been there! The Tuesday blood test results at the RSCH are: Wbc: 0.8; Hbn: 11.4; PLT: 92; Neut: 0.7 - so I am now neutropenic! My weight is 76 kgs; I am also told that at 150 my sodium level is too high. I have a problem with that because I am finding that all my food tastes far too bland without additional salt. I am sure that it is not good to add more salt, but I am only human! Now I have to go back on to the “clean diet” regime, avoid largish gatherings and - a thousand curses - not drink draught bitter!

Next morning I have a surprise visit from the blessed Mary - Mary Roberts - en route home to Devon. This is great as we update each other on things, especially the many and various happenings amongst her former family tribe!! Terry and Lesley come for tea in the afternoon. We indulge ourselves in some extremely vintage Dizzy Gillespie on a CD I had not yet played. I also check with Paul Hill at the PRH that I should have a blood test there on Friday before giving myself Campath in case my neutrophils are below 0.5. In the event they are not and surprisingly my blood results are up on Tuesday’s at: Wbc: 0.9; Hbn: 11.7; Neut: 0.8; and Lymph: 0.04 - except my lymphocyte count which could hardly be much lower! I am feeling really good in myself, although I am finding that I am tired in the afternoons and am tending to have a doze for an hour or so. Is that real or am I being lazy? - the jury is out on that one! My taste buds are still a bit “up and down” depending on what I am eating. For example, bread is bland, but a bacon sandwich is good, especially with Tabasco sauce and meat tastes good. I am still not sure that I am tasting wine, especially red wine, as I used to. It seems that the long arm of Methylprednisolone stretches a good ten weeks and maybe more, as that is how long it has been since I last had any. Having said that my daily medications, particularly the Itroconozole and Nystatin, cannot help but dull the tastebuds as well.

We have Linda and Paul down for the weekend. Tina and Linda go shopping in Tunbridge Wells on Saturday while I do a few “just jobs”, like cutting the front grass and taking down the untidy collection of pictures on the wall above the staircase - a long overdue assignment! Paul and I go to the Royal Oak for a beer and sandwich lunch and I have to make-do with a Guinness, rather than indulge in a pint of Harveys. I am not sure if I should have had a beef sandwich, cut off the joint, but I did - to hell with it! Stephen and Sue join us for dinner of Spanish pork casserole, with a prosciutto and melon starter, cheese and a apricot and almond pie - delicious! Sunday was a low-key affair. I decided I should not go to Church, which would no doubt be a full house with John doing a folk Mass. After a light lunch, we dozed the afternoon away! and then had a dinner of leftovers from last night.

Week of 7th to 13th May 2007

Started with a Bank Holiday and Sarah and Paul round for lunch. I was due to resume my treatment programme on Tuesday with a self administered dose of Campath. Steve Devereux had advised that I should do this under supervision at the RSCH day unit as I had not had Campath for over eight weeks, I might get a reaction and it would be wise to be there as a precaution. Besides I also needed to have a weekly blood test. Would you believe it - I rolled back my shirt sleeve to see where my blood sample might best be taken and there was a slight rash! - another on the other arm and more slight rashes in various other places. I was checked over by the SHO and - maybe psycho-sematically - felt a bit heady, as if I was about to start a cold or something, bearing in mind my tendency to have allergic rash reactions to cold-type infections. Two hours after my arrival at the day unit it was suggested that I should go ahead and take the Campath. But I was not happy. How would they be able to tell if any further rash that developed was a response to the Campath or not? So I refused to do it and arranged to come back on Thursday. Besides Terry and Lesley, who had brought me down, had been waiting around town for two hours already and it was unfair to ask them to wait yet another hour until I was safe to leave - or more if that wasn’t the case!

Wednesday and I was visiting the Job Centre - Plus building in Haywards Heath to deliver my application form for Incapacity Benefit. “Are you signing on?” was the greeting from the burly, but somewhat older-than-might-be-expected security guard. I was able to see an official without even having to wait - which was a surprise. My application now goes on to the regional centre at Bognor and I should hear something in a few weeks. My P45s are copied and given back to me and I am given a copy of my doctor’s certificate, in case I have further need of it. On Thursday I am back at the RSCH, courtesy of Keith, having my Campath injection supervised and ensuring there is no reaction. Before the injection I am checked over again by Panos, the SHO. This is followed by a further check over by Paul Hill, who is here with his Thursday clinic. Nice to see him again. I get a print-out of Tuesday’s blood results, which are:- Wbc: 1.9; Hbn: 11.7; PLT: 96; Neut; 1.2; and Lymph: 0.2. I hadn’t noticed until Tina pointed out later that my white cell counts had gone down quite a bit since my last blood test two weeks ago - and I haven’t had any treatment!

On Friday I have a check over at the dentist and I need a couple of small fillings - “patching up” as he described it. He asked me about the discolouring of my lower front teeth. I am rather embarrassed to say that I had not noticed that my teeth had been blackened. I can only put this down to the Corsodyl, as it had done similar to my tongue. Hopefully when I get on to the mint version, this will all change. We have Val and Michel over for dinner on Saturday evening and Jim and Cath round for lunchtime drinks on Sunday. Meanwhile I have a Campath injection on Saturday. I have felt well all week and am constantly remarking to people I meet that all the time I am not having treatment, I am looking and feeling fine - for the time being!

Consultancy at Kings – no Treatment – and a Few Days in Honfleur

2007-05-21T09:54:00.000-07:00

Week of 30th April to 6th May 2007

With some helpful guidance from Anna, we found a rather attractive B & B in Honfleur on the internet, via Alistair Sawday’s website and I was lucky enough to be able to book three nights there - Tuesday to Thursday incl. Tina had to work on the Monday, otherwise we would have made it four nights. So we were up at the crack of dawn on Tuesday and catching an early ferry from Newhaven to Dieppe. Had a superb break in a great B & B in an extremely attractive town and the weather was really good - much as it was in the UK. Naturally we ate very well, although I must confess I did not enjoy the fish as much as I had hoped - and the north French coast tends to go a bundle on fish! I guess it is the effects of all my medication still dulling my taste buds. We also did a good deal of walking; nothing too energetic, but enough to get the sun on our faces. So I came back looking quite healthy, despite not having had any treatment for the past eight weeks! I am saying to people that I feel a bit of a fraud. I am looking well because I am not having treatment and that the moment they try to make me better that’s when I start to look ill (!!) We went for Sunday lunch at Stephen and Sue’s and walked off our meal with the two mile stroll home.

Friday 27th April 2007

The day of my much awaited appointment with Dr. Steve Devereux at KCH. My bloods were once again pretty good - Wbc: 2.6; Hbn: 12.2; PLT: 173; Neut: 1.9; Lymph: 0.29. He was very pleased with both blood and bone marrow results, the latter showing less than 5% CLL remaining - which is apparently a good situation after just five weeks of therapy. Having said that, he pointed out that 5% of several million cells was still quite a lot of cancerous cells! I still have a small lymph node which can be felt in the right armpit and a slightly extended spleen. However he had not received the CT scans nor the result of the bone trephine from the RSCH. The news on the donor front is that the searches of UK databases have been negative and they are now searching international ones. We were clearly disappointed that the UK searches had not been successful but were assured that it is still “early days” on the search for a donor overall. The screening process is lengthy, batching six samples at a time for examination. They will try to find a donor who has had CMV as that would give some CMV immunity in the donated bone marrow. We met the new bone marrow transplant co-ordinator Andre Jansen. I want to find out more about the donor search and resolved afterwards to see if I can get a separate appointment with Andre next time we come up. We are told that CMV could return as a result of further treatment and also during the bone marrow transplant process. Fortunately I had not contracted CMV disease. Although not explained and not asked, I subsequently believe this to be where the CMV has gone on to affect organs in the body, such as the intestine or lungs. Because of the likelihood of a further CMV reactivation, had there been a donor ready in the next six weeks, he said he would have recommended going for a transplant immediately and not giving me any more treatment. As that is not the case, we wants me to resume the programme and push down the CLL levels even further. Now that CMV had appeared on the scene, we are going to have to balance the benefit of further treatment with the risk of reactivation. I no longer need to take the anti-biotic Ciprofloxacin but I should continue having weekly blood tests to monitor CMV and progress with the Campath.

Our intention back in early 2006 - before the ceiling fell in on us (!) - had been to celebrate our 40 years of married bliss with a family dinner, a grand party and a weekend in Florence. In the end it was a relatively quiet celebration, albeit really enjoyed by us. So we asked Steve Devereux to delay the resumption of the treatment programme for a week so that we could have a few days in the north of France to make up for not being able to go to Florence. He is more than pleased to say “yes”. After a little lunch at the Sun and Doves we leave for home not quite sure in our minds if the morning had been as positive for us as it had seemed for Steve Devereux. I suppose that is natural, given the lack of news on the donor search. Once home I spend the evening and a fair bit of Saturday updating family and friends. I don’t want this to sound wrong - and I really enjoy doing it - but it is really very tiring keeping everyone informed!

Week of 23rd to 29th April 2007

Spent this week “recovering” from the rigours of our Sunday celebration. Everywhere in the house there are still little prints of our wedding photograph hanging on red ribbons from hooks and room lights - they are not coming down for some time yet! Had my weekly blood test at the RSCH on the Monday with stable results once again: Wbc: 4.4; Hbn: 12.0; PLT: 181; Neut: 3.7; Lymph: 0.1; and CRP >5. In my pursuit of the Incapacity Allowance claim I saw my GP, Richard Cook, in the afternoon to obtain a sickness note. He was keen to get an update on how things are going for me, including my lengthy stay in hospital. It’s great to have a GP who is interested in how things are after referring you on to consultants. I am feeling fine, no doubt from a combination of not having any treatment, having also now recovered from my chest infection problems and a week of lovely weather!

Recovery from Hospital and our 40th Anniversary

2007-05-21T09:43:00.000-07:00

Week of 16th to 22nd April 2007

I spent this week getting myself back into the swing of home life as opposed to being institutionalised in hospital. Having said that, I had to go back Monday and Thursday for blood tests in Haematology Outpatients. I won’t hear anything about the CMV samples unless something crops up but otherwise my results were excellent: Wbc: 3.9 and 4.4; Hbn: 12.3 and 12.5; PLT: 177 and 206; Neut: 3.3 and 3.6; Lymph: 0.1 and 0.2; and CRP both >5.
Jim took me down to Brighton on Thursday, which was good. We had a pint at the Bull at Ditchling on the way home just to show how much back in the swing I feel. On Wednesday evening we had decided on a short pre-dinner walk but only got as far as Sue and Richard Cattell’s when we were hailed in for a glass of wine. We spent the next hour enjoying a chat, sitting on their terrace with a gorgeous view across to the downs and hearing about their trip to the Galapagos Islands and the Amazon Rain Forest. It doesn’t get much better than that! People are saying that I look well. I don’t think they are just trying to be polite. Perhaps I have caught a bit of this glorious sun we are having.

My medication – both liquid and tablet – is still giving me a nasty taste in the mouth at various times of the day, which doesn’t help when I am supposed to keep up the calorific intake. But at least I am having a break from my treatment and I am not having anti-biotics and anti-virals pumped into me any more! One thing I have not mentioned before is the discolouring of my tongue, which first came to notice while I was in hospital. It has turned a rather nasty black colour, but the black looks more like a fungal growth on the surface of the tongue and I can scrape it off both with a tooth brush and my finger nail. No one has said what is causing it, but I suspect that it might be the Corsodyl mouthwash. I had been supplied with a pink coloured version in RSCH, as opposed to the clear mint flavoured one I had before, when I did not have this happening. Whatever is causing it, it looks awful, but I don’t think it is affecting my tastebuds. Anyway I shall be reverting to the mint version soon as that is what I will get from the chemists. To show willing as an escapee from treatment for a few weeks, I cut the front grass and even went for a short cycle ride to check out how fit I am – or not. I have to confess my legs wobbled a bit when I got off the bike! Anna and co. drove down from Mull on Thursday. The timing has been perfect as Saturday is Anna Swallow’s wedding in London, Sunday is our 40th anniversary and they are off to Athens on Tuesday for their photo assignment – probably four weeks in all including driving there and back.

I have now eventually driven our new car, albeit it took me to Saturday to do it. It is rather good! I have also applied for Incapacity Benefit via a very helpful Jobcentre Plus organisation. I received guidance from my local office, then called the national call centre from where a clerk called me back and we completed the electronic form over the telephone. They will send me the form to sign and return with some items of validation, such as a sick note or letter from my GP. What a good service! As I have been self-employed since last May, I receive no employer’s sick pay, so the £81 per week I think I will get will be very useful. It will be retrospective to 29th January, when I stopped working and it is not means-tested. We have also had good news from Greek Islands Club, the company with which we booked our big celebration holiday in July on Kefalonia. Having pleaded our case to the company boss, particularly the bit about my not having holiday insurance, we are going to be able to rollover our deposit to next year. This is really great as we thought we could well have forfeited the £900 deposit!

We had a lovely day on Sunday celebrating our 40 years - with beautiful weather. We had drinks in the New Inn garden, Anna and Matthew cooked lunch and then we had friends in for champagne and cake about 4pm. Paul Wehrle did a surprise CD of the event. I gave Tina a
ring and she gave me a smart new laptop computer. I am feeling good and have done since coming out of hospital. Although sometimes the tastebuds are a bit funny, I am enjoying beer, wine and food. But then it is six weeks since the end of my last lot of steroids.

Two weeks in Howard 1 Ward RSCH

2007-05-21T09:31:00.000-07:00

Weekend 14th and 15th April 2007

We have a quiet weekend with my getting used to real life again. On reflection it was a good thing we cancelled Southwold; I would not have been up to it. I am finding it quite difficult eating the larger dinners we usually have at home. I had not realised that the hospital dinners were smaller portions. I am also being exhorted to eat more and put on some weight. The fact that I am 73.5kgs (ie 11st 8lbs) and therefore roughly the weight I was in my early 40s has got nothing to do with it! The weather has been absolutely beautiful for the past two weeks and this weekend is no exception. We had a lovely Sunday lunchtime sandwich and drink in the sun at the Royal Oak. Now that’s a great welcome home if ever there was one! Dinner of a superb Spanish pork casserole with enough left over for me to have for lunch tomorrow.

Friday 13th April 2007

I am up at 6am checking my weight – 73.5kgs then getting my early morning anti-biotics until gone 9am. I am feeling pretty good this morning. I still have nasal catarrh and coughing from the chest, but nothing like earlier days. It is 11.45am and I just finish doing my beard with my new beard trimmer when Vicky Tindall arrives with Panigiotis and good news. I have two – yes two! – more negative CMV results from Kings and I am free to go! At last!! I will have to wait – no doubt interminably – for my takeaway medications so Tina will come about 4pm to collect me. I suggest she brings another holdall as I have accumulated so much stuff here over the past 5 weeks. It is yet another blue sky day, so a great one for escaping hospital. I update my blog and send a text message to all and sundry. I also get a message to Fr. Foley to thank him and Sr. Peter for their kindnesses over these past weeks. He calls by about 4pm and I learn that Tina’s old friend from playgroup, Molly Ball, is still alive and now resident at St Joseph’s Home next to the church here in Kemptown – which is good news.

Because of the seriousness of CMV and its potential to be reactivated, even after the treatment I have just received, appointments are made in Haematology Outpatients for next Monday and Thursday for me to have blood samples taken. A decision on the resumption of the chemotherapy programme is held in abeyance for a week or so. Paul Hill is on holiday until Monday 23rd (West Indes for the Cricket World Cup!) but the decision will no doubt rest with Steve Devereux. Despite the best efforts of the hospital pharmacy to hold us up, we eventually get away at 5.30pm. In the meantime I get today’s blood results, which are:- Wbc: 3.9; Hbn: 10.8; PLT: 120; Neut: 3.5; Lymph: 0.1; and CRP: < 5.0. We have a relatively quiet evening making and receiving lots of phone calls.

Reflections on nearly five weeks in hospital:
I thought a week in Kings was experience enough of being an in-patient and I never expected this would be following-on so swiftly. I can honestly say that I was not bored witless until the last week, especially with the real prospect of a further weekend looming. I kept myself pre-occupied reading and doing my blog – but no TV! It seems that I am always able to fill time with something, useful or otherwise. Perhaps I am a chief exponent of Parkinson’s Law – whatever! I thought the nursing staff on Howard 1 were really good – once I had established one important rule – and the catering and cleaning team was excellent. Yet again the overall experience was one where I realised that there were plenty of people a lot worse off than I was – and poor Eng Wye was the most obvious example of that. Bearing in mind the current national past-time of berating the NHS, hospital care – or lack of it – and the inadequacies of doctors, consultants, nurses and the management at all levels in the NHS, I can only speak from my own personal experiences in both Kings and the RSCH in Brighton. I have been so impressed by the treatment and care I have received and I could hardly ask for better.

Thursday 12th April 2007

I sleep well and unusually am not awake until past 6.30am. My BP is 162/73, temperature 36.6c and my weight now 73.5kgs. Sr. Peter visits to give me Holy Communion. She is followed shortly by Vicky Tindall. She stops my Spirolactone as my fluid retention seems to be under control and we need only continue with the Furosimide. Still no news on the CMV front, but arrangements are made for a bone marrow sample to be taken at 3.30pm assisted by a small dose of intra-venous sedative. I have never been offered this before. I also have the long vaunted echo-cardiogram to follow up on my possible Mitro-valve prolapse. This is carried out on me by one Jean Shrimpton – but no – not the famous one! Anyway it turns out I don’t have a prolapse, simply a leaky valve, or as Wayne puts it – a slow puncture! Whilst waiting in the cardiac unit I speak with Aileen Sherry from church, who is having her pacemaker checked over.

My blood results today are Wbc: 7.2; Hbn: 10.9; PLT: 132; Neut: 6.7; Lymph: 0.1; and CRP: < 5.0. At 2.30pm I get a surprise visit from Keith for about an hour, as he has been seeing a client in town and called by on spec. - which was nice. At 3.30pm I have good news from Vicky Tindall that my blood sample of 2nd April is negative for CMV – yippee! And I am on the phone to Tina straight away and texting soon afterwards. I then have my bone marrow sample procedure, made considerably more comfortable by the use of the sedation and which includes having oxygen nearby in case it is needed! I would not have minded having that before! Tina visits me shortly afterwards but I am a bit dozy so she doesn’t stay long and then, after dinner, I sleep for a couple of hours. My evening obs. are BP: 157/74 and temperature 36.4c. I catch up on my blog around 10pm.

Wednesday 11th April 2007

I wake to notice that the fluid in my legs, knees and thighs is definitely much less and my weight check shows that I am now 73kgs – a 2kgs loss in 24 hours! My weight today is the lowest since I have been monitoring my weight from January 2003. Over these four years my average weight has been in the range of 81kgs with a low of 77kgs in the spring months of 2003. So this is quite a significant development as 73kgs (11st 7lbs.) is a weight I have not been since my early 40s!

My early morning obs are BP: 158/61 and temperature 36.4c. Tina is day off today, which is good as it is another sunny day. I have a visit from Jim Rodgers with beret fresh from La Favorita in the Plaza Mayor, Madrid. 45 minutes later Barry and Hilda Sexton arrive, closely followed by Panigiotis – but no CMV results yet. My 11am obs are BP: 160/76, temperature 36.2c. Whilst I am still coughing, etc., I feel that my catarrh today is less problematic. My blood results today are:- Wbc: 16.5; Hbn: 11.3; PLT 138; Neut: 15.8; Lymph: 0.2; CRP: < 5.0. Again this shows how sensitive I am to GCSF, which I had injected yesterday evening. These white cell counts are the highest I have had since the very early days of chemotherapy back in February, but I am still immune compromised through the low Lymphocyte counts. I must ask if Lymphocyte count recovery can only occur naturally and what critical factors come into play when its count continues to be as low as it is. It’s 2.20pm as I am typing this and Sr. Peter calls by with a short prayer for me. She will be coming late morning tomorrow with Holy Communion. My early evening obs. have my BP higher at 172/76 and temperature 36.1c. but by 10pm my BP had returned to its more regular range at 160/72.

Tuesday 10th April 2007

This is now my 5th week here! I have an early start with Foscarnet from 6.15am. My weight this morning is 75kgs – down 2kgs from yesterday. My legs seem to have lost some fluid, but 2kgs? Not sure about that - still very curious. BP: 165/80 and temperature 35.7c. Amazingly my blood samples are lost somewhere in the “pod” transportation system, don’t get to haematology and have to be done again. Today is Kings sample day as well. This is the second time in a week that samples have been lost. What is going on! I see Tim Corbett again today. Nothing to note from that except that I still have a little rattling in the lower lung and there is no CMV news yet from Kings.

My bay companion for the past few days, Dave, is discharged this morning and replaced by Wayne who has moved down from another bay to make way for two women patients. Wayne has a similar condition to mine but it started as Non-Hodgkins Lymphoma. He is currently having different treatment from me although he is also looking towards a bone marrow transplant. This doesn’t make complete sense to me as he is being treated by the oncology team working on this ward, whereas I am overseen by haematology, so I can only assume our conditions are not that similar. He is not very well and has a number of aches, pains and symptoms that are the cause of some concern. He is quite desperate to get out of hospital as he is a self-employed joiner and has work piling up which he has had to put on hold. I have two hours rest in the afternoon before Tina comes. A cloudy start to the day has turned bright and sunny, which is good news for Matthew and co. who are spending the week at Camber – hi de hi campers!! My evening obs. are BP: 168/81 and temperature 36c. My blood results today are: Wbc: 2.7; Hbn: 10.4; PLT: 125; Neut: 2.4; Lymph: 0.1; CRP: 5. The white cell counts show the GCSF effect yet again as this is day three and I have an injection this evening. My 9.30pm observations are BP: 162/82, temperature 36.2c – Foscarnet, reading, sudoku and bed.

Monday 9th April 2007

I wake to sense that my legs are down a bit from yesterday but my weight is the same – 77kgs – maybe it’s a mirage as I felt the same yesterday! My early morning obs. show BP: 168/80 and temperature 35.6c. I get just the Ganciclovir this morning so I am no longer hooked up after 8am – which makes a nice change. I am told that the pharmacy has tracked down some Foscarnet in London – Kings in fact - and some is on its way by taxi – would you believe it?! My blood results today are: Wbc: 4.2; Hbn: 10.4; PLT: 112; Neut: 3.9; Lymph: 0.1; CRP: 7 – this CRP is the lowest we have reached after starting to note it on 14th March, when it was 69.

Tina is in at midday to see me and has a lunch invitation to Steve and Sue’s, which is super. She also has a supper invite to Cath and Jim’s, so that takes care of cooking for today at least! She has found time to prune the apple tree as well! Tim Corbett renews his acquaintance with us after a week’s break. He prescribes me some linctus for my throat, which does not seem to be problematic from his view. He will also arrange for the taking of a bone marrow sample and for me to have an echo cardiogram to check out my suspected mitro valve prolapse – as promised but never done at Kings! We discuss the vagaries of the Easter break on CMV results coming back from Kings, suggesting that I could be here all week until we get those magic two zero readings. I have a relaxing afternoon, newspaper reading and catching up on my blog and at 5pm have my Foscarnet. So I only have one infusion of it today. My late afternoon obs are BP: 152/76 and temperature 36.1c. Evening spent reading and doing sudoku.

Sunday 8th April 2007 (Easter Sunday)

I am 77kgs this morning At 5.30am – there is no rhyme nor reason to my weight fluctuations as the fluid on my legs appears to be down a bit from yesterday. My BP is 169/80 and temperature 36.0c. Sister Peter comes to give me Holy Communion just as I am starting my toast! John Duncan also comes early to give his blessing for my trip out today. My blood counts today are: Wbc: 10.1; Hbn: 10.2; PLT: 109; Neut: 9.6. A pattern has emerged in which the days I have GCSF are followed by high white cell blood counts, typically 9 or 10, whereas the days following no GCSF are back around counts of 3 or 4. Decision:- drop the GCSF to once every three days. I have observations at 11am, which show BP: 150/73 and temperature 36.1c. I have permission for an afternoon “leave pass” for Easter Sunday and Tina arrives at 12 midday to take me to Matthew and Charrise’s at Worthing. It is also my first sighting of our new car! We have a superb roast lamb - Clive’s Hurstpierpoint lamb of course! And I enjoy two pints of Old Speckled Hen, even if it is brewed in Bury St. Edmunds! I get back to the RSCH about 5.15pm in time to order something light for tea. I do some newspaper reading for an hour or so and then am sending up zzzs for a couple of hours waking about 9pm with a sore throat. I put this down to all the coughing I am doing. I still have an endless amount of mucus coming up from my lungs, much of which is still green – and this is after four weeks of this cold! However it is affecting my temperature, which stays at 36.1c this evening with my BP also at 150/73. I am told there is a problem with the Foscarnet which should have been ordered from the pharmacy by Thursday with it being a long Bank Holiday weekend – but it wasn’t! They have been able to rustle up a bottle from somewhere for tonight but tomorrow may be problematic – great! So I get my Foscarnet started at 10.45pm finishing around midnight.

Saturday 7th April 2007

My early morning observations are BP: 167/76, temperature 35.7c. My weight is 75kgs. I don’t know what is happening here as my weight is going up and down like a yo-yo with the fluid in my legs suggesting a higher weight today, as opposed to yesterday! I have a walkabout after breakfast and showering and find the little sunken garden Tina told me about. It could do with a clean up with rubbish and fag ends everywhere. Otherwise it is lovely there in the sun and out of the wind. I have a new neighbour who was a milkman until his cancer forced him to take sick leave. At least he gets paid something. I find out that my previous neighbour died in the night. He was very ill and was clearly in great pain. It was good that he was moved to a separate room to allow him to die in relative peace and dignity. His family are devastated but knew it was inevitable. My blood results today are: Wbc: 4.0; Hbn: 10.4; PLT: 113; Neut: 3.7; Lymph: 0.1; and CRP: 11.

John Searle comes to visit at 11.30am bringing the order of service and music for the Easter 10.30am service. It is great to chat and to hear how successful the confirmation classes have been, particularly as far as the candidates participation in the music goes! I just knew John would find a way of getting more kids involved in the Sunday liturgy – he has so much to offer.
I then sleep soundly from 1.30 to 3.30pm and then read until Tina comes. She stays for an hour and a half leaving about 7.15pm. My evening observations show BP:152/72, temperature 36.4c. I then sleep for an hour and a half – I obviously need it! – and then read up to midnight.

Friday 6th April (Good Friday)

I have another fitful night with my neighbour suffering quite badly next to me and needing the nurses to help him. However I am still awake and set for my blood samples and the start of my anti-biotics at 6.30am. Amazingly, by 8am we have the blood results! – Wbc: 8.2; Hbn: 10.2; PLT: 118; Neut: 7.8; Lymph: 0.1. My legs seem to have lost fluid since last night and my weight shows 81kgs – 1kg down from yesterday. I decided not to put on the compression tights whether it is the right thing or not! Matthew visits me early – about 9.30am as it is the best time for him with the children itching to do things over the long weekend. He is dead pleased that I am coming for Sunday lunch. I haven’t had any exercise for the past two days so I go looking for a garden Tina has told me she found recently. I search in all the wrong places and later she shows me where it is. It is sheltered, gets the afternoon sun and is ideal.

My 1pm observations are BP: 156/70,and temperature 36.6c. I am being looked after by Laura the haematology out-patients staff nurse from Valladolid. Paul Hill sees me just after lunch. No more CMV results, but he takes me off the Tazocin and Clarithromycin and we resume Ciprofloxacin instead. This is good news as my afternoon out on Sunday will not be squeezed between two doses of Tazocin. I still have a rattle in the bottom of my lung. I am very tired and sleep from 2pm to 4.30pm with occasional interruptions of nature! The diuretics are definitely working well today! Tina comes from about 4.45 through to 6pm. She brings me a bunch of flowers Steve Scott had got for me, which was a lovely thought on his part – “to brighten up my room”. Unfortunately the ward rules do not allow flowers, so Tina takes them home. My neighbour is very distressed and we decide to go to the day room where I have my dinner. Fortunately a single room in the ward has been vacated this evening and my neighbour is moved there. He is surrounded by an even larger number of family, including his brother, and they all go with him to his room. I understand that he has bone cancer and does not appear to have long to live. It is all very sad.

Thursday 5th April 2007

I am having somewhat fitful nights as I am wearing the compression tights with my pyjamas and they are most uncomfortable. I am awake at 6.30am for taking of blood samples and having the regular clutch of anti-biotics. My BP is 166/86 and temperature 35.7c and my weight is still 82kgs. Sr Peter comes to give me Holy Communion at 10am, after which I cancel our “gourmet” weekend at the Crown, Southwold. Even if I escape during next week, I have concluded I will probably need to take it easy for a while. I may not be able to eat and drink everything I normally would and it is quite possible I might not enjoy the weekend at all.

I was expecting Steve Pitt to visit this morning and he brought Owen Horaeu along as well. Then Vincent arrived closely followed by Bill Swallow. Bill did not stay long as he obviously realised the group was too big, bearing in mind my poor neighbour next door. Everyone has to vacate to the day room when Paul Hill and Panigiotis arrive on their rounds. I get good news that my latest CMV count is now 182. My blood results also arrive, sowing: Wbc: 3.3; Hbn: 10.2; PLT: 109; Neut: 3.1; Lymph: 0.1; and CRP: 14. I am just looking to settle down to an afternoon nap when Dave Lloyd arrives responding to my Welfare contact. He catches up on my “case” and I then try to get some shut-eye before Tina comes. I am not sure if I actually went off to sleep or not! My neighbour is surrounded by his family today; it is all very tragic as he is so ill. Tina stays until my dinner arrives and the rest of the evening I read my paper and doze. My 10pm observations are: BP:130/72, temperature of 36.3c. As my calves and ankles seem to have reduced in size I decide not to wear my compression tights in bed.

Wednesday 4th April 2007

Another 6.30am start for Tazocin, Foscarnet and Ganciclovir all in quick succession. My early morning observations show BP:140/79 and temperature 36.5c. I have nurse Sophie for the first time. I discover that I am allergic to the plastic tape called Transpore which is used to secure the valve end of the PICC line. It cuts into my skin and does not breath. So that is something else to add to Derma Film on the allergy list! The Ward Manager, Gail Pottinger shows an interest in my case as they do not often have haematology patients on her ward. After a big coughing and blowing session, I am feeling a lot clearer this morning. I have a visit from Simone and Martin Garrad from the old office. Their arrival coincides with Vicky Tindall, very early on her rounds. There are no CMV results from Kings yet and she stops the Teicoplanin as it has run its course. Although my cold is feeling a lot better I still have a rattle in the bottom of my lungs. Erik also visits at 1pm after the others have gone. I then realise that I have not had my blood samples taken today. I am told that there was not request form for it from the doctor. Sophie checks with Haematology and confirms “Yes, they should have requested it”. So she takes a late sample.

My neighbour has gone home today and the bed is taken by a very sick man. It has been decided that I shouldn’t double up on the dosage of Furosimide as the potassium level in my blood is low and would go lower with a higher dosage. So the Furosimide stays the same and I am additionally prescribed Spirolactone. I don’t seem to get any benefit from the additional medication today and find I am now at home to Mr Blobby again! The new SHO, Dr Panigiotis (Panos) Stamoulos, comes with good news of the latest CMV count from Kings dated 29th March. It has gone down from 5652 to 383, which is great! In order to build up the potassium to the right level, he also prescribes me Sando K, a soluble tablet with a pleasant taste, to be taken three times daily.

My observations at 7pm show BP: 151/70 and temperature 36.9c. I query with Sophie that I should be having an injection of GCSF today, to find out that the medication chart shows it to be given on alternative days. I have never been told this, in fact I had assumed it was either every day or as necessary depending on the blood counts. We are unable to decipher a squiggle that we take to be a signature. I raise the issue the next day with Paul Hill, who happens to have John Duncan with him. It turns out that this “signature” belongs to Vicky Tindall. I make the point that I was not told what the GCSF regime was to be and should have been. There is no apology but at least I make sure they know I am on the ball about things. I get my blood results, which are:- Wbc: 4.3; Hbn: 10.4; PLT: 101; Neut: 4.0; and Lymph: 0.0. Poor Eng Wye is very thin and weak, not eating food and is in great pain. He has to have morphine and oxygen and goodness knows what else! I have my Foscarnet and Tazocin before settling down for bed. The news today is all about the release of the 15 sailors and marines captured by Iranian Revolutionary Guards in the waters off the Shat-al-Arab waterway between Iran and Iraq 13 days ago. The facts about how their release was arranged are unclear, except that the Iranian president Mahmoud Ahmadinejad was able to claim magnanimity by releasing them as an Easter present to Britain, coinciding as it does with the Jewish Passover and the birthday of Mahomet.

Tuesday 3rd April 2007

Not such a great idea of Matthew’s as I could not get undressed – or did not bother to – and slept fitfully on top of the bed, albeit comforted by my I-pod. Had the usual early morning anti-biotics and breakfast before checking that my weight was now 82kgs! Then realised that my legs had swollen up overnight to the elephant legs-size they were after I had the Methylprednisolone. So I am back to compression stockings and a doubling of the Furosimide dosage! It is a bright, fresh morning, so I took a short constitutional round the block – it clouded over later. Seen by Dr Sarah at 11.30am finding that my chest was now more or less clear, although recognising I still had a lot of stuff down there. Checked out the lymphocytes issue, finding out that they produce antibodies, which mount the immune response, whereas neutrophils fight bacterial infection. So there you are! No visitors today – Peter had rang to say that Sue had gone down yesterday evening with a bad dose of some kind of ‘flu bug, possibly picked up on the plane journey back from Madeira. She needed a visit from the night call doctor she was so bad!

My potential afternoon doze was interrupted by a visit from Dr. Nisha Nadwadkar from the urology team following my contact last week with Mr. Nawrocki’s secretary. I related the history of my urinary infection problem from the notes I had made at the time – I knew they would come in handy sometime! – mentioning that there had been no recurrence. She checked me over, including establishing by the traditional method that my prostate was ok! She also checked my last CT scan and noticed that my bladder appeared to be enlarged. I will have a further CT scan of the bladder to see if there is any problem there. She also wanted to arrange for me to have an endoscopy, at which point I insisted that Steve Devereux be consulted before any such procedure. I had raised the urinary problem at one of our meetings and his view was that he would not want me to have any intrusive examinations while I was on the clinical trial programme. The last word was that there would be a discussion tomorrow over this.

Tina comes at 4.30pm with an appointment letter from Kings. I am to see Steve Devereux next on 11th May. She is not happy that the urology people have got themselves involved,
although it cannot be helped given my referral from Richard Cook and my recent contact with Mr Nawrocki’s secretary. But it’s just another thing to worry about. 6.30pm and I am still on intra-venous Teicoplanin for the possible infection at the point of entry of the PICC line, followed by Tazocin via a bolus. I also get my blood results, some of which are very different from yesterday’s – which raises the question of accuracy or error. They are: Wbc: 3.8; Hbn: 10.8; PLT: 114; Neut: 3.6; CRP: 15; and Lymphocytes: 0.1. I get a print–out of this data and looking at it in more detail realise that there is a column which gives the desired range for each count as would be expected in a healthy person. The lymphocyte count should range between 1.3 and 3.5 – so that’s useful to know and explains why I have been told that I am lymphopenic. Five days after Tim Corbett had directed that I should be on Introconozole liquid as opposed to capsules – for greater effect - the pharmacy has at last deigned to comply with his wishes. I am only half pleased about this as I cannot stand the stuff. I have to take it twice daily on an empty stomach and at least an hour before eating – so it’s back to the early morning and late afternoon pleasure - with a grimace! - I knew so well over the past 2 months. Hey ho! In fact it’s nearly time for it now, as I am typing this at 8.15pm. My 9pm observations have BP: 159.74 and temperature is 36.7c. We then get to the time when I am due for my Foscarnet, but Matthew, the night staff nurse, sees that the medications record shows that I have already had it with the entry signed by Mary, who was looking after me during the afternoon and early evening. I insist that I have not had it, as I would specifically remember because it comes in a glass bottle and I have about two thirds only of it. Matthew is satisfied but needs Mary’s say-so, which eventually he gets. Honestly it’s a good job I am on the ball!

Over the past few days I have noticed that I have a nasty taste in the mouth, mainly in the afternoon and evening. Fortunately it does not interfere with the enjoyment of my dinner, but it makes me not want to drink water – which defeats the object of trying to flush through my system to get rid of the excess fluid in my legs. I guess it is all about the large cocktail of medications I am being plied with.

Monday 2nd April 2007

Well I am now into week 4 of my incarceration in RSCH, albeit now in Howard 1. Matthew is very efficient and has me on a Tazocin bolus, followed by Foscarnet and then Ganciclovir drips before I have had a chance to blink my eyes! My morning observations are taken at 7.15am and 9am with BPs of 143/77 and 136/67 respectively; my temperatures are 36.5 and 36.2c. My weight is still 79kgs, albeit after breakfast. I check this out with the scales on Howard 2 and find them telling me I am 80kgs, so I don’t quite know what to make of it! I have blood taken, with one CMV sample for Kings among them at my insistence. Apparently it would have been passed over had I not mentioned it. I also insist that I my name is Roland and not “my love” or “darling” as far as the nurses are concerned. I notice that the ward Statement of Philosophy talks about treating patients with dignity and as individuals. I then have a huge coughing session, making up for not having one yesterday!

It is a beautiful day outside so I take a constitutional round the building in the sun. I am visited by Brian Joyce and then Mia Morris pops in as well, so that was nice. Poor Brian – he recently lost Celia – and had a lot of difficult experiences down here at RSCH. He was pleasantly surprised by the décor and ambience of my ward and - even more – by the choices of meals on the menu! Not what he expected. In fact I had a really good steak and onion pie for lunch while he was with me! I am also seen by Dr Vicky Tindall. My chest seems to be clearing as things are moving up to my head. I am full of catarrh but at least I am able to shift it with no great difficulty. After catching up on my blog, I settle down to a relaxing afternoon, made even better by having a wonderful aromatherapy foot massage from Ann, a volunteer helper who does massages for patients as a past-time. Tina comes in just after 4.30pm and stays until my dinner arrives at 6pm. She didn’t feel like swimming this morning – too tired – but will probably go for an evening walk instead as it has been such a lovely day. Her last few weeks have been exhausting in all sorts of ways – mentally draining with anxiety over me and simply the physical effort to be constantly answering the telephone every evening from well meaning callers!

My 4.45pm observations show BP: 155/72 and temperature 36.6c. I also get my blood results which show a marked rise in the various counts as follows:- Wbc: 8.5; Hbn: 11.0; PLT: 124; Neut: 8.2; CRP: 11 and Lymphocytes: 0.1. – I must learn a bit more about lymphocytes as they seem to be assuming greater importance now. Dozed off completely listening to Humph’s last Best of Jazz programme after 40 years of Monday nights broadcasting it – but fortunately he is returning in three months’ time! My 10.30pm observations were BP:132/72 and temperature 36.3c. For some reason the Foscarnet did not arrive on the ward until gone midnight – or I think that was the time as I was asleep! Consequently Matthew thought I might just as well have the rest of the night with a saline drip operating as I would be getting my Ganciclovir around 6.30 to 7am.

Sunday 1st April 2007

I have a bolus of Tazocin at 6.45am and up and doing at 7am, showered and shaved. My weight according to the ward scales here is 79kgs – up 2 from yesterday. Is it the scales? – possibly. All my morning infusions are delivered without problem via the PICC line, which has been kept “open” by a small dose of Heparin anti-coagulant in the exposed part of the line. As the morning progresses the sun is streaming through my window along with a cool breeze sliding through a small gap of open window. Tina visits about 11am through to Tim Corbett’s round at 1pm. My cold seems to have moved off my chest and into my head, slightly affecting my hearing, but not to any serious extent. Consequently I have stopped using the Ventalin nebulizer as it doesn’t seem to be necessary. Discussed my possible discharge – as we always do - he is still concerned that I am severely lymphopenic. My lymphocyte count is virtually non-existent and that still makes me immune suppressed and just as vulnerable to infection as if I were neutropenic.

My early afternoon observations are BP: 131/66 temperature 36.4c. I read and doze through the afternoon before having my early evening doses of anti-biotics and dinner. I then doze again, wake up, resume blogging and have my daily Guinness. I heard from cousin Barbara earlier that my aunt Win was admitted to hospital in Margate on Thursday with an acute blockage problem of the bowel and had missed celebrating her 89th birthday. However, this evening she is considerably better and may be discharged back to her nursing home very soon. My blood results for today are:-
Wbc: 2.5; Hbn: 10.2; PLT: 111; Neut: 2.1; CRP: 8. Looking good, but I still have a dose of GCSF to help the white cell recovery. Overall I feel today has been a good day with my cold moving on a degree into another phase and I am feeling positive about my blood counts.

Three Weeks in Howard 2 Ward RSCH

2007-05-21T08:20:00.000-07:00

Three Weeks in Howard 2 Ward RSCH

Saturday 31st March 2007

I am awake at 5.40am – intricate ablusions again as was the case twice during the night! I am up and doing by 6.30am and checking my weight – 77kgs. I am on a Tazocin drip at 6.55am. through the cannula. Julie had tried a bolus but it hurt like mad so we changed it for a drip, which was a lot better. Then followed Ganciclovir while I had breakfast and then at 9.35am I was given the Foscarnet. This is very painful through the vein in the back of my hand and I need Paracetomol to reduce the discomfort. I have a 2 hour break from the pain of drugs through the cannula until 12.30pm when I have my next dose of Tazocin for half an hour. Meanwhile Tina has arrived. At 1.10pm I have my first observations of the day – which are BP: 143.75 and temperature 36.8. I am immediately told that I am moving to Howard 1 downstairs where I share a side bay with a chap called Colin Hillman from Willow Way, Hurst. What a small world! I am immediately seen by Tim Corbett. My CMV count is 5652 as of a sample examined at Kings on 29th March – I assume taken on Monday 26th March. This is considered to be good progress and every reason to continue with the combination of Ganciclovir and Foscarnet as prescribed. The chest infection has now moved into my bronchial tubes and the anti-biotics will continue on that problem as well.

I am on the ground floor with a window side bed facing south as before in Howard 2 and straight out on to the front car park. I am made very welcome by staff nurse Ali and charge nurse Leigh, who gets to work on my PICC line. The good news is that the line has cleared, no doubt due to the best efforts of Phil upstairs last evening, but with the Urokinaze having a delayed effect, so I am able to have my Foscarnet via the line and the cannula removed from its painful position on the back of my hand. My observations this evening, taken at 7.15pm and 9.25pm were BP 138/68 and 127/67, temperature 37 and 36.3c. respectively. I spend the evening getting back into “With Their Backs to the World” by Asne Seierstad – fascinating.

Friday 30th March 2007

Up and doing at 7am and observations taken at 7.20am:- BP 150/71, temperature 35.9c and weight 76.5kgs. Start ed a unit of blood at 7.30am for two hours. At 9.50am Phil has a problem flushing my PICC line ahead of my morning Ganciclovir to the extent that it is necessary to fit a cannula – rather painfully to my right wrist. I have visits from Sarah, Terry and Lesley and then Tim Corbett. The CT scan result looks good with less problem visible than is obvious from examining my chest himself. He puts me back on Tazocin and off Ciprofloxacin to treat my chest. Also I am prescribed Foscarnet twice daily to complement the Ganciclovir whose dosage is reduced by half. He advises that we keep to the results from Kings as the definitive position rather than their own laboratory. This ensures consistency of results as they are inevitably a lot more accurate. He aso wants me to swap back to Itroconozole in liquid suspension rather than the capsules.

Belatedly I get the Ganciclovir which was due at 10am followed by the Tazocin both via the cannula. Meanwhile Phil tries to clear the PICC line with a Urikinaze drip for nearly two hours but is unsuccessful and is still unable to flush it but cannot understand why not. I get my blood results from samples taken earlier today. These are:-
Wbc: 1.3; Hbn: 10.1; PLT: 122; Neut: 1.0. Not good and I will need GCSF this evening.
My 4.45pm observations are BP 131.71; temperature 36.6. I have a third unit of blood this afternoon which again is transfused via the cannula. But this is very painful despite the three hour rate we let it run at. Flushing afterwards is very painful. This has been a most frustrating day with much of the time lost attempting to get infusions into me that don’t want to go in and every effort being made to clear the PICC line so that we get the best use out of it.
Add to that some of my new medications have not come to the ward from the pharmacy and we are collectively fed up. I catch up on my weblog from 7pm after Tina has gone home for the evening. My observations at 9.45pm show BP:146/70 and temperature 36.7c. Meanwhile I have a cannula inserted by a doctor, rather painfully in the back of my right hand. I was given my Tazocin via a bolus, surprisingly easily, followed by the new anti-biotic – Foscarnet – to complement the Ganciclovir and tackle the CMV. I was asleep on the bed from about midnight to 1.30am and then properly to bed, after some intricate ablusions advised as necessary in conjunction with the Foscarnet!

Thursday 29th March 2007

I am awake at 5am and catnap through to 6.30am My 8.30am observations show: BP 149/67 and temperature 36.3. My weight is 76kgs again – consistent if nothing else as I am checking it at 7am every morning before having a shower. Guido sees me to tell me that he personally labelled and marked Monday’s CMV blood sample for dispatch to Kings, so he cannot understand why it was thought it never went. He checks further and verifies that it did go. So what all the fuss was about yesterday, I don’t know!! Just very annoying to not know whether things are going right or not. Meanwhile Tina has been in contact with Viki Bevan at Kings about the blood and about what is happening to me here. Her checks show that the blodd sample has not arrived! She will speak with Steve Devereux about my case as it is possible he might want me transferred up there. 10.45am and Sister Peter brings me Holy Communion and an hour later I have my consultant’s visit from Dr Duncan. “Just keep going with the current treatment” is his opinion.

I then have visits from Colin Dunbar and Vincent Meagher, plus magazines to keep me from being bored. As if I could be! I doze off after lunch until 3pm when I go for the high resolution CT scan of my chest. I cough heartily with every deep breath I take – and I have to do at least a dozen. Still it shows that the problem is clearly not going away yet. My 1.30pm observations are BP: 126/59 (that’s low!) temperature 36.5c. I get a text from Cath and Jim to say they found La Favorita beret shop in the Plaza Mayor in Madrid and have bought me a beret, size 57! Great! Tina is with me when we are told by Dr Vicky Tindall that Tim Corbet and Steve Devereux have conferred today and decided that Ganciclovir should be supplemented by another anti-biotic called Foscarnet in order to drive down the CMV count more effectively and the dosage for the Ganciclovir will be reduced by half to make way for the other. RSCH has been independently testing my CMV samples separate from sending off samples to Kings. Their latest count is 1250 – I am not told what day the sample is and we don’t know how that compares with the sample for Kings taken on the same day. Later I have my Teicoplanin by bolus and Jo starts me with a unit of blood. I will have the second tomorrow. My evening observations are: BP: 137/63; temperature 36.7.
My blood results for today are:- Wbc: 3.0; Hbn: 8.3; PLT: 122; neut: 2.7; CRP: 9.0.

Wednesday 28th March 2007

Awake at 6am for the start of the Today programme and showered at 7am. I am still coughing for England! My morning observations are BP: 145/67 temperature 37c. My weight is 76kgs. Following a referral by Richard Cook, I have an appointment with the urology consultant Mr Nawrocki at PRH on 16th April about all the urinary infection problems I had back in September and October last year. I had already put off a February appointment as I was on one of my day visits to Kings. I had mentioned the problem to Steve Devereux to which he had commented that you can get CLL in the bladder. Coincidentally or otherwise my urinary problems had occurred at the same time as my CLL was obviously returning, but since then there has been no recurrence. Mr Nawrocki’s secretary advised that she would mention this to him on Monday on his resumption from holiday, so he could consider the best way forward, given my present position and Steve Devereux’s comment. He works from this hospital as well and might visit me.

I have a visit from Michel in the morning and Tina arrives about midday in time for Sarah Hartley’s round. My chest is still causing some concern. They want to be sure that the infection is bacterial and not fungal. She expected I might have had the high resolution CT scan requested yesterday – but no. My haemoglobin level is such that I will need transfusing, probably with two units and probably tomorrow. I later find out that the CMV blood sample taken on Monday from me was not sent to Kings, so I have to have another taken. I had been told that two CMV blood samples per week should be taken from me; on Mondays and Thursdays. This is the second week that the Monday sample has not gone to Kings. Once is an unfortunate mistake; but twice smacks of muddle and incompetence. It is my opportunity for discharge by getting two negative samples in a week that is being jeopardised and this is extremely frustrating and annoying. My observations at 2.20pm show BP: 155/75 and temperature 36.4c. Tina is having lunch with Wendy Arscott in town, but will be back later in the afternoon. Meanwhile I am sitting in my chair by the window typing but getting very annoyed about the smell of cigarette smoke drifting up and through my partially open window from the builder working in the room immediately below mine and who has his window wide open. I know that as I went down to check it out! Apparently the hospital “no smoking” policy does not apply to the builders working on refurbishment of Howard 1 ward below. I feel a Victor Meldrew moment coming on, but must suppress it to keep my blood pressure down!

I spent some time scanning through Chris Pascoe’s book on Prince2 project management ready for Matthew coming in this evening. I made a few notes of points which I thought might be of relevance to him. I will leave it up to Matthew to decide if he wants to take the book with him and he does. Tina comes back from her lunch having sat and chatted with Wendy from 1.30pm to 4.30pm. Before she leaves to go home I get my blood results, which are good:-
Wbc: 2.8; Hbn: 8.1; PLT: 140; Neut: 2.6; CRP: 13. My haemoglobin level is down further from yesterday, so transfusion is a definite. I also text out an update message mentioning my chest infection and the expectation of being here until after Easter. I get several responses including one from Tim Godwin. Matthew and Charrise bring Ella, Lily and Mia to visit me and we have a somewhat chaotic hour. The girls go out for a short while and Jo is able to give me the Teicoplanin in a bolus, which takes no time at all, rather than a half hour drip. My evening observations are:- BP 142/68 and temperature 36.2c. Having brought my web log up to date I am now in a position to start reading my Asne Seierstad book about Serbia. It has taken two weeks to get here this point!

Tuesday 27th March 2007

I slept an hour and a half on the bed whilst initially listening to the midnight news! Once in bed proper I then slept until waking at 6.40am – with just one night time interruption. No need for my I-pod to get me to sleep and quite the most comfortable night’s sleep I have had since being here. That took long enough for the effects of the Methylpred to wear off! I am showered by 7.30am, my morning weight is 76kgs and my 9am observations are: BP 143/63 and temperature 37.1. I get a phone call from Richard Cutler from his lorry somewhere on the road back to Shorne from Ashford. He has been up since 4am! He is talking about Jane and him coming down for a visit, perhaps next Wednesday. I also receive a parcel from Jeanette containing a selection of bite size bars – a lovely thought. In fact I am eating a Crunchie bar as I type! I have also determined to get back on track with drinking two litres of water per day – which I did. This had slipped since last Friday because I was finding water rather unpleasant to taste, whereas today things seem to be much better. Despite this I bought two small bottles of Lucozade from the hospital shop, hopefully to give me some variety.

Tim Corbett comes to see me at 12.15pm with the news that the CMV count in my blood sample taken on Thursday 22nd is 30346, 23000 down from the initial count from a sample taken during the week commencing 5th March. This is the first indication of the level of progress I have made with the Ganciclovir. This result is after 7 days treatment with Ganciclovir and two weeks after the original blood test. Nonetheless this is not good news at all, because he is still talking about my being here for another two weeks. At the same time he isn’t overly happy that the chest infection is clearing up yet and wants me to have a high resolution CT scan of my chest to see if all is ok. At this stage I can see me being here right through Easter and it looks as if our Southwold weekend is in serious jeopardy. For the first time since being admitted into hospital I am really fed up and particularly so in anticipation of how Tina will be about it. As if prompted by this bad news, my blood pressure goes up in my lunchtime observation – BP 161/72 temperature 36.3c. I spend the afternoon on the laptop until Tina arrives. I fully expect her to be upset and frustrated by the news, but amazingly she takes it very well. I guess she may have already expected it, whereas I was optimistically thinking I would be out at Easter and we would make it to Southwold. We decide we should cancel the weekend, although it transpires they only need 48 hours notice and we have paid no deposit. So we still some options. My evening observations show BP back to 145/72 temperature 35.8c. My blood results today are good news, however, with a rise in my white cell counts as follows:-
Wbc: 1.5; Hbn: 8.5; PLT: 122; and Neut: 1.3. No doubt thanks to GCSF. I spend the evening typing and have finally brought my web log right up to date!!

I have now been in Howard 2 ward for two weeks. I came in with a bad cold and temperature and was told I would be here for the rest of the week while they sort me out with anti-biotics. Then came the news of CMV on the Wednesday and from that point I am on what has turned out to be a rolling two weeks of treatment for it, which is now going to go past Easter. Overall I glad I am on this ward rather than up in haematology, if only for the reason that I get a good signal on my mobile phone! The staff are good and Guido is a gem. The catering and cleaning staff are a delight, almost all of them from the four corners including Lithuania and Brazil. I have a good view out of my window, can watch the world go by if it suits and get sun when it is out. Having my own room I have privacy when I need it and with my keeping late hours in the first week and a bit, I do not disturb anyone else. I can rest or sleep when I want to, read my paper from cover to cover if it takes me, or get on with typing my weblog, albeit I will not get it on to the web for another two weeks at least. I have a very good signal with my mobile phone and am in constant contact with family and friends. I have Holy Communion brought to me on Sundays and Father Foley might pop in from time to time. I have good interactions with the nursing teams, particularly as my room is situated right opposite their station. So I can be as nosey as I want to be. I don’t have much interaction with other patients, some of whom are rather poorly and some I never or hardly ever see. This is a very different experience to what I had at Kings and considering I must be here for another two weeks or so, I am glad I have my own room. I might have run out of energy had I been in a ward with other people for more than a week – and I am looking at four! Today was the first time I can say I was fed up, getting news of the CMV test. It was not so much for myself but in expectation of Tina being disappointed.

Monday 26th March 2007

I had quite a good night’s sleep for a change - no need for the soothing sounds from my
I-pod. Nebulizer , observations, breakfast, Teicoplanin, Ganciclovir and blood samples followed on each other so that I hardly moved out of my bed until gone 11am! Guido had difficulty taking my blood, despite the two consecutive infusions going in without problem - would you believe it! The cannula on the back of my right hand was then removed, making it easier for me to shower, but leaving a tender bruise. Outside there is clear blue sky and it could be a warm day in here as well, as I will get direct sun on my window in the afternoon. I have a black tongue, which was noticed by Vicky Tindall yesterday. I wonder if it is fungal and then forget to tell Tim Corbett about it. My blood test this morning shows that I am even more immune compromised with readings of:-
Wbc: 0.4; Hbn: 8.2; PLT: 113; and Neut: 0.2. On the other hand my early morning check has BP at 154/62 and my temperature 35.9. I don’t know why but I have no further observations today until I ask for them at 10pm. They show my BP as 140/60 and temperature as 36.8. My weight tonight is 77kgs on the same scales as I always use. This compares with 75kgs yesterday morning. What is that all about?

I had a visit just before lunch from Mia Morris, who is an eye consultant working just across the road. That was nice. I also get a visit from Tim Corbett about the same time at which my blood results (as above) are given to me. He attributes the low white cell results to the Ganciclovir. Obviously this means that I am even more immune compromised and he prescribes GCSF to help bring the counts back up again. My chest is still rattling and he thinks I ought to have a focussed CT scan of the chest to check it out. I have a dozy afternoon - perhaps lack of recent sleep catching up on me? – until Tina arrives. Tina is unhappy because she wants me to be home and not here. She doesn’t like it on her own and can’t wait for me to be discharged. It is so unfair for her. I get all the attention and am laid back about the whole thing, whereas she is really the one suffering.

I have a GCSF injection followed by my evening Guinness and dinner. We are still having problems with the PICC line as Sally and Guido try to start me with the Teicoplanin. It is eventually realised that the nozzle on the arm end of the PICC line is the problem and Guido fits another one and off we go. It was broken inside and stopping the flow through it. Perhaps that has been the trouble all along. I call Matthew this evening for a chat as I hadn’t heard from him today. He is frustrated and fed up on my behalf and, typically, reacting just like Tina – they are so alike in temperament, etc. We resolve that he will visit Wednesday early evening with the girls, which will be great. My evening ends with a little typing after the Ganciclovir finishes at 11.30pm.

Sunday 25th March 2007

With the clocks going forward an hour, my “body clock” told me to have another hour of sleep – or at least rest - this despite my sleep pattern still being out of kilter. So my morning call to Tina was at 8am. I decided to check my weight before breakfast – 75kgs. I had just started my breakfast – about 8.45am – when Sister Peter arrived to give me Holy Communion – which was nice. I am feeling a bit of discomfort in the upper arm / shoulder area of my PICC arm and mentioned it to nurse Jo. Am I getting some form of allergic reaction? Blood pressure check at 9.40am gave me 161/65, with my temperature at 36.1c. I then take a walk down to the original part of the hospital to photograph the fascinating plaques and boards on this a quiet Sunday morning. This is followed by my morning Ganciclovir, with no flushing-type problem unlike last night. I then have a late shower and hey presto it is lunchtime already. How time flies when you are enjoying yourself !!! Pleased to say that I am feeling quite a bit better today and feel that the improvement is more marked than other day-to-day comparisons. I am putting that down to the ventalin nebulizer clearing my airways and breaking up all the nasty mucus in my lungs , making it much easier to shift. I am glad I am in here with the CMV because, having finished with the anti-biotics there would have been pressure to get me home, where I would not be resting as much as I am doing here, would be tempted to go out with likely temperature changes affecting my lungs and where I would not have the regular monitoring, chest examinations, etc., prompting more anti-biotics and the nebulizer. In fact my cold would just drag on and on for weeks.

Vicky Tindall comes to see me at 3.20pm. She finds I am still rattling down the bottom of my lungs. We discuss the PICC line and the amount of tenderness in my arm and around the point of entry, where in fact there is reddening of the skin, suggesting a possibility that some infection may be starting or have started. She prescribes me another intra-venous anti-biotic
(Teicoplanin) to deal with this and requests the nurses take a dry swab of the area to see if there are any gremlins on the surface of the skin. Tina visits after having had lunch with the Worthing Mockfords and having had red wine accidentally poured all over her by Ella - including in her ear! We notice that my line forearm is quite swollen and puffy. I point this out to nurse Jo, but a later examination reveals that it is the bandaging up of my arm to protect the end of the PICC, which I did too tightly – Doh !!

I get yet another cannula fitted – this time to the back of my right hand – because they cannot get my Teicoplanin into me via the PICC line. Nurse Julie puts some Hepsal anti-coagulant into the PICC line and lets it stay there doing its stuff for well over an hour. I works and I then get my Ganciclovir via the PICC line. My blood pressure this evening is 141/58 – good! However my temperature is 37.5c the highest I have had since first coming in here two weeks ago. I celebrate a weird day with a Guinness(!) and am in bed at midnight.

Saturday 24th March 2007

Slept fitfully as usual buoyed along by my I-pod, but no coughing during the night. Awake early again but lay-in between 6 and 7until the “Today” programme kicked in. My line arm feels a little easier this morning – or am just getting used to it? Not sure. 7.15am and Euni is in with my medication and the ventalin nebulizer. I am shaved and showered before my 8am breakfast and am ringing Tina to see if she is in better spirits this morning. Pleased to hear that she is, with a determination to go out for a brisk walk, before setting to with housework and shopping. Matthew has asked her to lunch tomorrow, which is great. At 8.20am this morning I am 77kgs, my BP is 148/65 and temperature 36c. I take a walk down to the hospital shop to buy my paper, which is full of background to the Bob Woolmer murder; match fixing mafiosi in India and Pakistan, not to forget the South African Hansie Cronje connection (he was killed in plane crash – don’t forget!). There are also comprehensive reports of the London 21st July 2005 abortive bombing trial and allegations of direct connections between the leader of that group, Al-Quaida and two of the suicide bombers of the 7th July. This has come about because one of the group has broken ranks on the group’s concocted defence storyline. The other main story is about the capture of 15 sailors and marines by Iranian Revolutionary Guards in the Shatt-al-Arab Waterway between Iraq and Iran, for supposedly trespassing into Iranian waters whilst intercepting a dow apparently smuggling vehicles into Iraq. Sounds like a set-up job to me in order to deliberately instigate an international incident – which it certainly has; agent provocateur or what!

Anyway enough of interesting current affairs. Daphne rang to check on my state of health this morning. She also reminded me that they would be over to Paul and Begona’s in Den Haag from Thursday through to Tuesday. 10.15am and I am on my morning Ganciclovir with Jo i/c.
Spent the morning reading the paper from cover to cover – as above! Paul Hill called by at 12.10pm to check me over. He found a small lymph gland in my right armpit, but of no great consequence. My chest is still a bit congested in the bottom left area, but I am on all the right stuff and he is overall happy about my situation albeit it will drag on for a while yet. My after lunch observations at 2.20pm show BP as 150/77 and temperature 36.8c. Tina then rang to tell me she was in Lewes with Sue Pitt, having been shopping and having some lunch there too – what a good friend Sue is! She will have to go home first and then down to see me and arrives freezing cold mid afternoon but is warmed up by the time she leaves at 5.30pm! My 9pm observations show BP as 143/69 and temperature 36.7, so things seem to be stabilising after a couple of days of higher BP. I have a theory on that which is that the higher BP coincided with the trouble we were having with the mid line. Whether I was getting worked up about it I don’t think. I was certainly getting annoyed. So that’s my theory anyway. Meanwhile we were having difficulty getting movement in the PICC line this time and Hepsal was used to help clear what might have been a small blood clotting at the end of the line. It worked and I had my Ganciclovir through the PICC. I have been trying to drink more water, like two litres per day. I am finding this rather difficult because I am not enjoying the taste of water much. Perhaps I should try sampling some of the drinks they have in the shop, like lucozade and similar.

Friday 23rd March 2007

Another fitful night’s sleep with I-pod in ears and awake at 6am and ringing Tina at 7am. Showered at 7.30am As I am now neutropenic, I have to pass on my cereal mix, but otherwise my breakfast is no different, except that I shall have two pieces of brown toast from now on and I do have Tina’s homemade marmalade to go with it, Ymmmmm. My line arm was causing me some discomfort during the night as I could not find a good position. It feels as if my tendons on the inside of my arm are unhappy being stretched and my bicep also feels tender. I mention this to Guido; he wonders if I have a slight allergy to the material of the PICC line – I hope not that would be too awful to contemplate – but we will keep an eye on things and see how or if they develop. I am happy with that, but unhappy with the level of discomfort, albeit there are no problems whatsoever with its operation as intended for blood sampling and infusions.

I go for walk down to the hospital shop to give my legs some much needed exercise, as I am a bit wobbly on them. I take a look up on the first floor of what is the original hospital building, finding some fascinating and historical signs and plaques. I resolve that I must photograph them and will ask Tina to bring my camera bag down tomorrow. Sunday would be a good, quiet morning to take some photos. There is a grand board making reference to King William1V and Queen Adelaide “condescending to visit this hospital on the 4th of November 1833 and, after minutely inspecting every department, were graciously pleased to express their entire approbation of the manner in which it was conducted.” I ask you – how quaint. There is also a commemorative plaque on which is recorded a donation from a Mrs Ralli in 1904 of over £26,000 in memory of her late husband. The amazing thing about this is that his name is carved in full, whereas she is plain “Mrs Ralli”, with no first name – an unfortunate sign of the times no doubt. On arrival back on the ward, at 9.20am Guido has been looking for me to do my morning observations, but having walked up stairs to see these inscriptions etc. and then back up the stairs to Howard 2, my blood pressure (BP) is high at 171/66. In fact my legs were very wobbly and my hips ached from just walking up the staircases. My temperature is ok at 36.3c, my weight 77.5kgs.

The big news today is that the Jamaican Police believe that Bob Woolmer was strangled to death in his hotel room the night after Pakistan were hustled out of the World Cup by Ireland on Saturday – or did they throw the match? During a phone chat with Stephen Pitt, mention was made of beer, including Guinness, just as Guido came in “Guido, any reason why I couldn’t have a daily Guinness, strictly for medicinal purposes?” “I don’t see why not. It will probably do you good, won’t it.” So the green light for some daily pleasure, especially now I have my taste buds back. 11.45am and Tim Corbett visits with Vicki Tindall, Sarah Hartley and Sarah Worcester, introducing herself as the Haemotology Nurse Specialist. I am both neutropenic and lymphopenic. Tim Corbett checks me over and finds that I am wheezing considerably and my chest is rattling down below. He decides to prescribe me ventalin nebulizer four times daily and an anti-biotic called Clarithromycin 550mg twice daily, which both start at 1.15pm My 2.30pm observations show my BP as 155/70 temperature 37.2c

I spend the afternoon relaxing and reading until Tina arrives at 4.50pm. My 5pm observations were BP 146/67 temperature 36.5c. My morning blood results are:-
Wbc: 0.9; Hbn: 8.9; PLT: 120; Neut: 0.9; CRP: 17. So a little improvement on yesterday’s data. At 7.45pm I get a quick visit from Fr. Foley with a blessing. I then have my first Guinness. My fourth set of observations at 8.20pm are BP 152/64 and temperature 37.3c. I am then blogging until quite late, whilst I get my Ganciclovir about 9.45pm. I am in bed at 1am.

Thursday 22nd March 2007

Awake at 1.30am with earache and I have paracetomol to deal with it. I had a longer sleep, waking at 6.30am with a bit of a head and ask for more paracetomol. I make my morning call to Tina and wish Anna bon voyage to Mull via Peter at Streetley tonight. I am shaved and showered by 8am. My Ganciclovir is started off at 9.10am and I have a visit from Paul Hill at 11.10am. He says things are going well overall for me, but they had lost last week’s CMV blood sample intended for Kings, which means that today’s blood sample is the first CMV check that Kings will be able to report back on. Whether this will delay my escape from here I don’t know. Easter looks a forlorn hope, so I make it clear that the weekend after Easter is an absolute must to not be here as we have our Southwold weekend. We will probably be ok for that but I may still be immune compromised. Paul reckons I will go straight on to Campath immediately upon my discharge, whenever that might be, with regular weekly CMV and blood checks at PRH to ensure I am not neutropenic. He is not too bothered about my blood pressure as it is only over two days. “Is it a known side effect of Ganciclovir?” he asks of Vicky Tindall. No reply. I still have plenty of Oedema in my legs and ankles.

I am visited by Erik Shopland between 11.30 and 1.30pm. and we have good chats. My lunch is a Covent Garden red bean and lentil soup (delicious). I am typing my log from 3pm to 4.40pm, when Tina arrives. My BP check shows 151/65 and temperature 36.6c and my 9.20pm check is 149/69. My blood results for today are:-
Wbc: 0.8; Hbn: 9.2; PLT: 107; Neut: 0.8; CRP 20. I am in bed at 12.30am.

Wednesday 21st March 2007

At 3.30am I am awake with a headache and am given paracetomol. I am then awake at 6am having had a head sweaty night with my I-pod on all night again. It is Budget Day and Gordon Brown’s 11th Budget. Following yesterday’s line changes, my right arm is fine. My left arm is better for the change from derma film plaster – to which I now know I am allergic – to a Tegaderm breathable plaster. But I have a sore area on the edge of the crook of my left arm. I am showered at 7am, breakfasted at 8am and I trim my beard at 8.45am. At 9am I am typing on the laptop and am receiving Ganciclovir at 9.50pm. I am seen by (Dr) Sarah Hartley about two days of higher blood pressure, then I have a visit from Chris Pascoe up to lunch time. Tina has been to see Ashley Adsett the Oncology Counsellor for a chat. My BP at 2pm is 142/66. I spend the rest of the afternoon to 5.30pm resting on the bed until Tina and Anna arrive with Eva. Anna is off in the morning to Mull, so we say fond farewells.

At 7pm Jackson is here to check my BP. He tells me to relax my arm, but I did not realise it was tense. My BP is 157/67 my temperature 36.4c and I check my weight at 78kgs. It then occurs to me that my higher BP could be attributed to annoyance or anxiety about the ill fitting Mid Line in my right arm, now removed. Well it ‘s a thought anyway.

Tuesday 20th March 2007

I am awake and reading at 5.45am. No sweats last night, but on/off sleeping with my I-pod going. No coughing first thing. I call Tina at 7am and am showered by 8.15am followed by breakfast. I am delighted to find out that my Itroconozole liquid has been replaced by capsules. I am also back on the anti-biotic Ciprofloxacin, rather than intra-venous Tazocin. At 10.15am ahead of my Ganciclovir, we attempt to draw and flush my Mid Line, but it is no go and a call is put in for the I/V team to come and see me. Matthew and Charrise visit as Charrise had an appointment with her hearing consultant. Urokinase is tried again, but it is very painful and I have to have some paracetomol to ease the discomfort. Tim Corbett sees me at 12.30pm and instructs that the Mid Line is removed and that a PICC Line be inserted in my left arm. I am also rushed down to scanning for a CT scan with a cannula in the back of my right hand

My lunch of Covent Garden soup with croutons is delicious. I then have my Ganciclovir later than usual – 2pm – into the back of my right hand and at 2.45pm Debbie from the I/Vteam comes to fit a PICC Line. There is the usual oodles of blood, but at least it is in and it was relatively painless. It took her just 25 minutes. At 4pm I am down in x-ray finding out where the lline has gone and was amazed to see it going horizontally across my upper chest and stop on the right side above my heart. It is just where the vein goes. Tina, Anna, Nick and Eva visit at 4.30pm with me bouncing Eva happily on my feet on the bed. After dinner I rest on the bed for an hour or so. My blood results for today:-
Wbc: 1.1; Hbn: 9.6; PLT: 112; Neut: 1.1; CRP: 26. My weight is 77.5kgs

Later I get a call from Anna with great news. They have settled on a price of 138,000E for the house they want in La Liquiere, in the Languedoc. I have both arms rather sore, the right one I clean up and apply E45. I persuade Suzanne to change what I now know to be derma film and to use smaller plasters which allow my skin to breath. It is obvious to me that I have some sort of allergic reaction to derma film. I am later given a red wristband to show this. I get Ganciclovir via my PICC Line, no problems. I am reading until 1.30am when I hit the hay.

Monday 19th March 2007

Another I-pod night’s sleep but intermittently. Wide awake at 6am with our transistor radio instead of Roni’s Christmas present as the batteries have gone down again. Not too much coughing during the night either and no night sweats. The cannula on my wrist was rather sensitive during the night. I decide as my aversion to water is at an end, I should drink more and make an effort for 2 litres per day. I manage that easily today but do not find it easy to keep up with. For my breakfast this morning I have a mug of tea. When did I last have an ordinary English tea? I am resting at 9.10am. My weight today is 75kgs and my temperature this morning is 36c. I have a hot chocolate at 11.10am Not sure if it was quite right. Visit from brother Peter just after 12midday. He and Suzanne were en route home from Sally’s in Hampshire.

Tim Corbett checked me out at 1.30pm. My cough/cold should clear up relatively soon, but the CMV will take longer. But I should be ok for the weekend after Easter for our weekend in Southwold, although I will still probably be immune compromised. The scheduled bone marrow sample and CT scan scheduled for Kings on Monday can be done here. Steve Devereux’s consultation will not be able to go ahead as I will still be here. I do not need to continue on Tazocin and will revert to Ciprofloxacin tablets. Rested for an hour this afternoon and at 4.30pm Guido had a go at breaking up the congealing film of blood at the end of my Mid Line, using a Urokinase solution. Initially painful, it got easier with further amounts of Urokinase in a drip. Tina and Anna visited between 4.30pm and 5.30pm. Guido finished with me at 6.40pm cleaned and wrapped the line and we will use it at 10am next morning with Ganciclovir. Tonight’s Ganciclovir will be delivered via the cannula, which will be removed after use. Todays blood results are:-
Wbc: 1.5; Hbn: 9.9; PLT:102; CRP 29. My temperature is 36.1c

I go to the Day Room to set myself up to watch the FA Cup replay, between Spurs and Chelsea. Matthew rings me at half-time and tells me the good news from the Golf Holiday Company. He will get a 13% pay rise, plus a share in the profits of the company for the current financial year, which Matthew knows has been pretty successful. This is really good news!! And the culmination of much thought on Matthew’s part as to how to really tackle Steve about it, without putting him in an embarrassing position, vis a vis Longmere. Matthew wants to try to do a course in Project Management – the Prince model – so I will ask Chris Pascoe for information on the course he did in 2005. I hope Matthew does do something like this course as it would certainly stand him in good stead for the future. There will, in all probability, be life after the Golf Holiday Company! Bed at 12.45am.

Sunday 18th March 2007

I am wide awake at 4.20am with a sweaty head, so I am reading yesterday’s newspaper. I had been concerned that one of the reactions to the Methylprednisolone would be chapped hands – but not so far. I am coughing a bit between 6am and 7am. I have blood samples taken at 6.45am by Ruta whilst being assessed by Phebbey. Didn’t she do well !! I am washed and breakfasted by 8.30am. My morning temperature check shows 36.6c. I have my morning Ganciclovir via the cannula, meanwhile I am warming up my shoulder and upper arm all morning for Guido to test and flush my mid-line so that we can try it on Tazocin. My blood results today are:- Wbc: 1.1; Hbn: 7.0; PLT: 76; Neut: 1.0; CRP: 40. I am seen briefly by Dr Duncan at midday.

Before lunch, Guido does some more work attempting to flush, etc. my line without success. He concludes from his past experience that it is probable that a film of blood has congealed around the end of the line, forming a fairly long sheath back down the outside of the line, but obviously inside the vein. When flushing, the discomfort starts firstly at the top end of the line probably by the sheath of blood expanding out and pressing on the inner wall of the vein. As he pushes more flush in the point of discomfort travels down the arm (and line) suggesting the sheath of blood expanding likewise against the inner wall of the vein going backwards. Then flush liquid appears coming out of the line hole at my elbow to prove the point. All this would explain the inability to draw back blood or get a flush into the line. He cleans up the blood and flush that is running everywhere and we await advice and the decision of a doctor about the use of a suitable anti-coagulant to break down the film of blood. I get my Tazocin drip at 12.45pm despite all this.

Because my haemoglobin level was so low yesterday – let alone today! – it had been decided to give me three units of blood today. This starts at 1.15pm, with me resting peacefully on my bed while the blood trickles in! My temperature at the start is 36.2c. The rate is two hours per unit. I have a break for my Tazocin to be given to me, while Anna visits with Eva and then I resume with the third unit. However, I am now getting a lot of discomfort to my upper arm which is not resolved with a slower flow rate and in fact gets even more painful. So we go for another vein on the top of my right wrist, which seems to be ok. We have one and a half hours left for this unit, timed to finish about 9pm.

In the meantime Guido tries flushing my mid-line once again, but it is no more successful than before - just seeping back down the line to the entry point. At 7.20pm Father Foley comes with Holy Communion, which is much appreciated by me. I then go straight on to the Ganciclovir combined with a saline drip for ease of delivery. This will run for another hour and a half, by which time I have been infused and transfused more or less continuously for 10 hours! The position of my cannula is quite awkward and sensitive as it is sitting on my wrist bone. I have it bandaged up to keep it tidy overnight. It has been a long and somewhat tiring day but I am awake reading etc., until 1.20am!

Saturday 17th March 2007

I am awake about 4.20am with my cough now on my chest and feeling really congested. I cough and splutter for two hours. Am I finding it easier to drink water? Yes I think so. I get my first lot of Tazocin at 7.20am. It is Ella’s 6th birthday! And I call her at 8am to wish her a happy day. She had her ears pierced yesterday and has sparkly ear-rings and pink sunglasses! Wonderful! My temperature at 10am is 36.9c. An attempt is made by nurse Suzanne take blood samples from the line. There is no suction, so the bloods have to be taken in the usual way. A further attempt is made to deliver Ganciclovir via the line, with a heat press to ease it on its way. It is so uncomfortable I cannot take this any more and we stop and go to the cannula. Meanwhile I get a saline nebulizer session to help free up the catarrh on my chest. Tina and Linda visit this morning with some purchases for me – pyjamas and a pair of track suit bottoms to keep me going these next rolling two weeks. While they are with me the weekend consultant colleague of Tim Corbett – Dr Duncan – sees me. We discuss the chesty cough and the mid-line. He directs that we hold on the line and use the cannula on my left arm. I get Tazocin at 1pm – no problem. My weight today is 74kgs. My blood results are:-
Wbc: 1.1; Hbn: 7.6; PLT: 69; Neut: 1.0.

It is the last day of Six Nations Rugby and I have free TV courtesy of the previous occupant of this room who left a Patientline card in the TV with, as it turns out, over 12 hours viewing left.
It is all very entertaining with France emerging as the Champions with a last minute try against Scotland to beat Ireland on points difference. Meanwhile Wales beat England convincingly at Cardiff to put into perspective last week’s beating of France by the England “youth” team. Tina, Linda and Anna arrive at 7pm from Ella’s party. We are expecting to take delivery of our new Citroen C4 on Monday – exciting! I spoke to Matthew later in the evening to update him on the events of the day. Ella had asked why I was not at her party and he told her that I was in hospital and not well. He seemed to get quite upset about it as we talked. My temperature at 10.35pm is 35.5c. I get my Ganciclovir and then the Tazocin via the cannula, while Ruta cleaned up the old blood around the Mid-Line entry point in the crook of my elbow. then slept for an hour on the bed and woke with a headache, so had some paracetomol. My cough seems to be a little better – hmmm! We shall see.

It is now a week since the end of my second week of Methylprednisolone. Looking back on the experience of my first five-day session, there are a number of differences – mostly to the good. Firstly I did not “hit the wall” at the end of the session as I did when leaving Kings - and I was taking Campath at the same time. Having said that, instead I was overtaken by the bad cold that brought me into here on the following Monday. Side effects seemed to come on the scene a bit earlier and not so vigorously. The dry mouth problem has hardly featured whereas it had been a real difficulty before, lasting quite a long time. The loss of taste for water came up again and surprisingly it is only two days less this time that I felt able to start drinking water in litre-type quantities. This was ten days after finishing the Methylprednisolone. My sleep patterns have been turned upside down both times and more or less for the same length of time. I am typing this retrospectively, but the first reasonable night’s sleep this time was the night of 26th March, two weeks and three days after the end of the Methylpred session, compared with only ten days of late-going-to-bed evenings. But I suppose the biggest difference has been in my ability – or otherwise – to eat and enjoy food. In February it took a whole week to find anything I could eat in the way of a substantial meal and a further 2 weeks before things started to taste good – or reasonably good. Having the knowledge of that difficult experience, this time we didn’t have to try all sorts of different food in vain hopes of finding a tasty meal. But more surprising is that I have been eating the hospital meals more or less from the start of my stay here.

Friday 16th March 2007

Awake at 5am – the steroid effect is still with me – and went to the kitchen to get a drink or something, only to find that the food thief had been at it again! Despite my threatening notice. This time it was a very nice sandwich, which Paul Wehrle had brought for me – pastrami and rocket – that had disappeared without trace. I don’t believe it! At 7am I am hooked up for Tazocin, 9am I am showered and at 10am Guido and Sr. Geraldine fit me with a smaller version of the PICC line – a mid line – in my right arm. There is lots of blood and lots more bleeding afterwards. However, Guido takes blood samples from the line and then starts me with Ganciclovir and all is working well. Tim Corbett on his rounds at 12.30pm calls by to check me over. We discuss the CMV and its effect on my stay here. At least two weeks is still the order of the day. I mistakenly connect CMV with the cough and cold that brought me into hospital. As Tim Corbett leaves me so in walks Bill Swallow and of course we start to chat. After a time – I don’t know how long – I get a message from the nurses’ station that Tina is on the phone enquiring after me and tears me off a strip for not answering her text messages and not letting her know how the line fitting went. I had in fact switched off my phone when Tim Corbett visited and forgot to switch it back on when Bill arrived. I apologise but we are not reconciled. Bill leaves about 2pm-ish to be followed shortly by Anna, Nick and Eva, fresh from la belle France last night. I have a late lunch of ham, sliced carrots and celery from the food I brought in while we talk about their two weeks’ of travel and house searching, but especially the house they are interested in buying in La Liquiere in the Languedoc. They show me photos of it and it certainly looks very appealing, albeit needing a lot of work doing to it.

About 4.45pm I get my head down for a rest and sleep, bearing in mind all this visiting and talking gets me coughing and spluttering and tires me out. Tina arrives at 8pm with Linda hotfoot from her drive down from Barlestone. Tina and I clash over the business of no morning contact in front of Linda – who makes a discreet exit - and one of the nurses. I won’t go into details but we are both uptight, both in the wrong. Tina is still stressed by the whole business of my being in here, the fitting of the line and the CMV, despite her speaking with Viki Bevan at Kings yesterday. As usual it is easier for me – I am the patient; I get the attention; the carer has to get on with it. It is so unfair and she doesn’t deserve to be so stressed. We make up and have a big hug-in. I have a late dinner of two bowls of Covent Garden pea and ham soup, followed by a chicken hotpot. Both are delicious. My weight today is 74kgs.

At 10pm Phebbey, on the night shift, gives me the Tazocin by bolus in the line. It is painful.
This followed by an attempt to give me the Ganciclovir through the line. It is also most uncomfortable, including tenderness on the outside as well as on the inside, to the extent that Phebbey stopped doing it and inserted a cannula instead. The remainder of the Ganciclovir is delivered by the old method. At 12.20am I am set for bed.

Thursday 15th March 2007

Up for a 7am Tazocin bolus – a syringe injection - and an 8.15am blood test. Breakfasted and then a 9.30am Ganciclovir infusion, after which I showered and then found Paul Wehrle on a visit. While Paul was with me Paul Hill did his round, so he disappeared for a while, then at 12.30ish Tina came for her lunchtime visit. Tina had been trying to make contact with Viki Bevan at Kings and was to speak with her in the afternoon – with good result – putting things into a better perspective for her and us. After all the activity of the morning I was knackered, what with all the coughing my cold was giving me, took paracetomol and I rested - and slept - the afternoon from 2.30pm until 5pm, interrupted slightly by the fitting of a cannula to my left hand. At 5pm Keith Arscott came for a visit - during which Fr. Foley also came to give me Holy Communion - and of course Tina came down after work. My blood results for today are:
Wbc: 1.4; Hbn: 8.6; PLT: 56: Neut: 1.4; Crp: 57; My weight tonight is 75kgs.

I felt a lot better this evening after the afternoon sleep and maybe the anti-biotics are having a beneficial effect. Anna is due back to Hurstpierpoint later this evening off the Newhaven ferry, from her journeys round the Languedoc and Brittany house viewing. That will be good for Tina as it must have been awful alone in the house, especially with that ridiculous news about the CMV. My cannula position hurts. They will be fast running out of veins for me; I feel a bit like a pincushion already. Sat up reading and doing Sudoku until 1.15am, then slept with my I-pod on.

Wednesday 14th March 2007

I am up four times in the night to the toilet and also had the head sweats. Just like a cold would do to me. But some good news is that my enforced rest with feet up on the bed seems to have considerably dispersed a lot of the oedema in my feet and legs, such that I have dispensed with the ridiculous tights. My temperature at 6.40am is 36.5c. It is a bright blue-sky morning outside, just right for a walk out, which is exactly what Guido has arranged, albeit on his official day off. He takes me to have my Pentamidine Nebuliser at the nearby Sussex House to give my lungs another month’s anti-biotic protection. He also uses it as training of two of his staff. Shortly afterwards Tina arrived for her lunchtime visit, while my lunchtime Tazocin is given to me by bolus injection rather that saline drip. It takes 5 minutes, rather than half an hour. It is no problem and gives the nurses a little more patient time – just. My 2.50pm temperature was 37.4c

I then had afternoon visits from Jim Rodgers and Eric Ross and telephone calls from Jerome – who is just back from Hong Kong with a job - and Martin Stevens. This is followed by a visit from Fr. David Foley, the parish priest for Kemptown who gave me the anointing of the sick, explaining that it was no longer the anointing of the dying – for which I was grateful! The results of my bloods tests this morning were:
Wbc: 1.7; Hbn: 9.7; PLT: 57; Neut: 1.7 and - a new one for me – Crp: 69 (this the measure of infection fighting level in the blood – as I understand it).

Tina came down about 6.30pm and sat with me until we were interrupted by “Dr. Tindall” – whom I now know to be Vicki Tindall a friend of (Dr.) Emma at Kings. She simply blurted out that they had received a blood result from Kings for Cytomegalovirus (CMV) with a reading of 53k when it ought to be 10. This was to treated by the anti-biotic Ganciclovir (380mg twice daily) for at least the next two weeks. At the time this seemed to be really big impact news, but Dr Tindall did not have the intuition to recognise this or the skills to deal with it if she had so recognised it! We were left like a couple of goldfish having been fished out of the pond, gasping for air, explanation and a friendly hand. Tina was particularly distressed by the news.
We spent the next hour or more trying to comfort each other, not really knowing what it all meant, especially in the current context of my having been admitted with this cold and cough.

When Tina left, we had resolved that she would contact Viki Bevan at Kings for a chat to get a better perspective on it. Additionally I resolved to find out if there was an oncology counsellor at RSCH who we could contact as well. All this was put behind me though when I went to the kitchen fridge to get a drink of fruit juice about 11.30pm to find that someone had been at my food, despite its being clearly labelled. A Covent Garden Soup (Lentil and Ham), a small bottle of mango and passion fruit juice and a tub of yoghurt, honey and ginger had been stolen and the cartons dumped in the kitchen waste bin. I was trailing around my drip at the time, spitting rivets and making quite a bit of “annoyed” noise, disturbed Adela and Phil, the night shift and was obliged to tell them about it. I checked all the labelling on my remaining food items and then wrote a note on a sheet of paper which said “Keep your thiefing hands off my food – Roland room 2” and stuck it in the fridge on my food. Needless to say, after that I had a sweaty night with head sweats and a temperature of 37.2c

I have decided not to slavishly record every meal whilst I am here. My breakfast is always based on food Tina brings in for me, like mango & passion fruit juice, Greek yoghurt, honey, Eat Natural cereal, mango, pineapple or banana, plus white or brown toast and marmalade from the ward kitchen. I later add a mug of tea to that as I get my taste buds back. The hospital lunches and dinners I invariably find are both nourishing and quite tasty, with a good selection and day-by-day variety. There is always soup, meals like chicken lentil casserole, beef and mushroom pie, lamb stew, etc. plus steam puddings, pie and custard, ice cream, or fruit for afters. All good stuff!

Tuesday 13th March 2007

I am about to have another and very different hospital experience; this time in the RSCH’s specialist HIV ward, previously known as the Elton John Unit because of the famous man’s earlier sponsorship of it over time. However it was not until later in the week that I realised that the ward was so specialised. As far as I knew it was just a ward in the hospital with a bed for me. It was more than a bed in fact, as each of the six beds in the ward had their own room. Consequently, and unlike the Kings experience, it was some time before I saw any of the other patients and in some cases, never saw them. My window looks out on to Eastern Road, Brighton from the east wing of the front of the original Victorian hospital building. Unfortunately, because of the buildings opposite (including The Sussex Eye Hospital – with apologies to Art Deco) I don’t have a sea view, just a seagull view!

I am awake and thinking at 7am and call Tina and Matthew to tell them where I am. At 7.40am I have my first of four daily doses of Tazocin and am told my temperature has now dropped to 36.2c. Then at 8am the Patientline rip-off TV starts up of its own volition with GMTV – one hour’s free TV to whet the appetites of the vulnerable! I meet my first nurses, including the ward manager - Guido Tapia – who I am to find out later has taken me under his wing. This man is just great and so experienced, having run this ward for 17 years and having been a nurse for the past 35 years since he came here from Ecuador. I spend the day lying on my bed, reading, making notes and - very importantly – resting, as I am coughing and spluttering all the time and using up a lot of energy doing it. I call Matthew, Anna (in Brittany), Daphne and Peter to let them know what is happening. At 12.30pm, I am seen by Dr Tim Corbett, who tells me I will be here until the weekend, when I should have had enough Tazocin to sort out my infection. My blood counts from last night are:-
Wbc: 1.5; Hbn: 10.1; PLT: 67; Neut: 1.3. My weight today is 76.5kgs – down 2.5kgs from Friday and that’s not good given the amount of fluid still in my legs. My temperatures in the afternoon were both high 37.6c and 37.7c. One feature of my admission here is that I am the only person who knows what my day-to-day medication should be, so I am left alone to take it myself from my weekly box I brought from home. All the remaining tablets I brought with me are locked away in the cabinet in my room, but together with the bottle of Itroconozole – not the Nystatin, nor the Corsodyl – just the Itroconozole!! So I have to ask if I can get it out twice a day – what is this all about!!

In the evening I discuss my food intake with Guido as I want him to understand the difficulty I have with my appetite and weight loss. He is very good. Tina is here until quite late, after which I do Sudoku, listen to my I-pod and turn in for bed at 11.40pm. We have labelled my packs, etc of food and drink and put them in the ward kitchen fridge.

Breakfast: Mango & passion fruit juice, Greek yoghurt, honey, banana, ginger;
Lunch: (Don’t remember)
Dinner: Mango and passion fruit juice, sweet and sour chicken and rice (surprisingly tasty)
Supper: Covent Garden Lentil and Bacon Soup – mine (superb)

Three Weeks in Howard 2 Ward RSCH

Monday 12th March 2007

We resolved yesterday that I would make phone calls today to get advice and direction on this cold and cough. But first I had a shaky walk up the village to get some ham for lunch and some avocado pears. I stopped to speak to Cath in the High St. and tell her my latest, which obviously didn’t sound very good to her as she got quite upset. I think I must also have looked very shaky but told her I was going to make the contacts to sort things out. This business of frequency of the need to urinate kicked in at the Deli., after buying the ham. But the assistant would not let me use their toilet - “Health and Safety”. “Stuff you,” said I, “If I pee myself before I get home”. Anyway I rescued my plight at Gibsons, thanks to Linda. Really annoying and the last time I go into the deli, unless I go back later and tell them I am now relieved! Now I know how Victor Meldrew feels about life! On my return I list my symptoms –
Temp 36.8c, nose catarrh and phlegm, bit of a headache, feet and legs like an elephant’s with oedema, urinating every 15 minutes or so and feeling very weary. After several abortive attempts I get through to the chemo-therapy room, haematology outpatients and speak to Charge Nurse Teea and then (Dr) Austin. He advised me to take two paracetomol, co-trimoxazole (septrin) 960mgs, try to get a blood test done today (and Friday) and if I could manage it, to get to see Dr. Paul Hill for an examination.

Thanks to Mo McGhee, Paul Hill can see me at 3pm this afternoon in his ward at PRH. Tina gets home and drives me up to hospital for 3pm. “I have only 5 minutes,” he tells us frantically when he appears at 3.30pm. “What are your symptoms?” he demands with urgency, as he checks me over. I rattle them off as I had done with Austin in the morning. “You feel warm”, he observes as he feels my chest, “Let me check your temperature”. “It is 37.7c.” he remarks, scribbling frantically on one of the medical note sheets he always uses. “I am going to admit you, give me a little time to sort out something”. Bang goes his “I have only 5 minutes”. Tina joins me from the ward day room to await developments. What is going to happen? How will the day end? Where will I / we end up? About 30 minutes later Paul returns to tell us he has a bed for me in the Medical and Surgical Assessment Unit at Royal Sussex County Hospital (RSCH) Brighton and we should get there as soon as possible with a bag for 2 or 3 nights.

We are at the RSCH about 5.30pm, but first we have to go through the procedure of registering into the hospital through their A & E admissions and Triage Nurse system, which is “down” and therefore being paper driven this evening. Fortunately, Tina remembers the “To Whom It May Concern” letter, which Viki Bevan gave us in the event of such a need to get priority treatment. I am not thinking very straight at this time and it is good that she is. It is my passport to immediate attention. I contact Matthew while we are waiting in a bay in A & E to let him know what is happening. It is 6pm when I am admitted and indeed it is to a bed in the Medical and Surgical Assessment Unit (MASU), as already arranged by Paul Hill. I am there for a seeming eternity. I have blood samples taken at 7pm, which later show:
Wbc: 1.20; Hbn: 9.8; Plt: 83; Neut: 1.20.
I am seen by a very handsome Dr (Victor), who makes immaculate notes about my background and condition - but that is just one stage. We have brought a coolbag full of food bearing in mind the difficulties I have been having with my eating. I am able to have a dish of pork casserole micro-waved. I then think we agree that Tina should go home about 9pm as it looks as if it will be a long night before my assessment is completed and they are able to find me a bed on a ward – if they are actually able to do that! I am made aware that I am on 15-minute observations for blood pressure and temperature while I am being assessed. This is from an efficient Charge Nurse (Morgan). I recall going for an x-ray and possibly other checks – it is a little vague now. That takes me away for about an hour from the Unit and the 15-minute observations slip. I ask an auxiliary nurse to check on this, but pick on the wrong one. He is not in the right job, doesn’t want to be there and certainly doesn’t want to be fussed with doing my observations. Both his temperature checks are dubious – not right into the ear. “Normal” he tells me. I am unhappy with this for several reasons, one of which relates my doubting their accuracy. Fortunately I have another check by the night duty doctor (Dr) James at 12.55am, which reveals that my temperature is in fact 38.1c. Fever pitch!! What a good call by Paul Hill this afternoon to get me in. How would I have known that I had such a temperature if I was at home in bed? I am prescribed intra-venous anti-biotic called Tazocin after referral to Dr Tim Corbett. By 2.30am my temperature is down to 37.8c. At 3am I am transferred to Howard 2 ward, escorted by Morgan, with my bags of clothes and the cool bag of food.

With my rather sudden hospitalisation, typing my log is the last thing on my mind but eventually I get back to it. I am in fact only now resuming typing this log 9 days later, on 21st March! – so I have a lot of catching up to do while lying on my hospital bed.

Breakfast: Mango and passion fruit juice (not quite right); yoghurt, Eat Natural cereal, cut pineapple, honey; water.
Lunch: Ham salad with carrots and celery;
Dinner: Spanish Pork Casserole in hospital microwave in MASU (good)

A Weekend with a Cold and No Twickenham

2007-05-21T08:09:00.000-07:00

Sunday 11th March 2007

A good night’s sleep. Up at 6.45am to start my medication, feed Tosca, get some fresh water and a cup of tea for Tina, then back to sleep – and I did sleep. Not feeling well enough to go to Mass this morning. Cold definitely with me for the weekend. The England - France rugby match at Twickenham kicked off at 3pm on a bright sunny afternoon. England’s new look team turned expectations on their heads and beat France convincingly. Both Tina and I could have been there with Richard’s party. But given how I am feeling today, there is no way that I should or could have been there. In fact had I tried, I think the consequences would have been dire for me from the hindsight of the oncoming week. I would have been frozen in the stand, would have had to keep going to the toilet every 15 - 30 minutes and could have caught something like pneumonia. Anyway, I saw the game in the warmth and sanctuary of our lounge on our new HD-ready Sony TV, but had not worked out how to record it! Dozed a bit in the evening and bed at 11.20pm. I am really leaden footed this weekend.

Breakfast: Mango and passion fruit juice (much better); yoghurt (better), Eat Natural cereal, cut pineapple, honey; water.
Lunch: Lentil and ham soup; ham, celery and raw carrot.
Dinner: Spanish pork casserole (excellent), couscous and peas; rhubarb yoghurt.

Saturday 10th March 2007

Up and feeding Tosca at 5.45am then on to the computer doing early emails – steroid effects no doubt! Feet and legs definitely back up and Mr Blobby is back as well – so diuretics resumed and those nice white compression stockings are back on with a vengeance. The steroids appear to have given me a florid, healthy complexion as well. It is somewhat deceptive as I don’t feel particularly healthy! I seem to have picked up some sort of a cold as well. For the past day I have been nose blowing and coughing up a mix of catarrh, etc. – quite a bit of it green, suggesting a possible infection. Fortunately my temperature is not high – 36.6c. I will contact Kings about all this on Monday.

I have gone off our filter water and Tina has bought me bottled instead – it is best straight from the fridge. Tina went into work for the morning. I walked up to the newsagents and butchers feeling somewhat woozy, then feet up for a while with paper and laptop. Am going to try to get this lot on to a web log today – we shall see how it goes!!! Phone calls and text messages all day and a nice visit from Sarah with flowers. Linda also sent flowers to Tina via M & S. Clarice and Clara – joined at the hip as Eve used to say! TV rugby all afternoon; TV evening after dinner then slept from 10pm to about midnight.

Breakfast: Mango and passion fruit juice (not quite right); Bio yoghurt (not right), Eat Natural cereal, cut pineapple, honey; water.
Lunch: Lentil and ham soup; banana.
Dinner: Chicken and stir fry vegetables (very nice); vanilla, ginger and choc chip ice cream – not ready for the plain chocolate yet.

A week of steroids at Brighton

2007-03-11T04:37:00.000-07:00

Friday 9th March 2007

Took a little walk to the village to buy flowers and the newspaper and get some fresh air. Then caught up with my log before Tina came to drive me to the RSCH for my 11.30am appointment. All done by 1.15pm and away with large bag of needles, syringes and swabs, etc. for self injecting my Campath for the next 3 weeks – but forgot to ask for the surgical gloves! My weight to days is 79kgs. My blood counts are - Wbc: 4.30; Hbn: 9.4; Plt: 178; Neut: 4.20. Fairly restful afternoon, after doing my Campath, despite several phone calls and text messages!! Tried a Guinness before dinner to join Tina with her G & T, but no good. Taste was gone – sadly! Slept on the settee from 10pm to gone midnight, forgot my Aciclovir again! My legs are up again with fluid retention!

Breakfast: Orange juice; yoghurt, cereal, mango, honey; water.
Lunch: Lentil and ham soup; apricot fool.
Dinner: Roasted vegetables - peppers, courgettes, onions, celery(good) and couscous; bread and butter pudding (surprisingly nice!).

Thursday 8th March 2007

I have decided to take the Metoclopramide at least every morning before breakfast as a nausea preventative - my stomach is not feeling too special nowadays. However, the fluid retention in my legs has ceased, so I have stopped the Furosimide as of today – good news!
Took the 10am bus to Brighton as I wanted to see Dr Paul Hill whilst he was having his weekly RSCH clinic – if only for a catch-up chat. He checked me over and found a very small gland “up” in my right arm pit, otherwise I was ok. Discussed the options re the Pentamidine “refresher” next Tuesday or reverting to Septrin and Ciprofloxacin depending on my white cell and neutrophil counts. He would check the protocol. I then went downtown shopping, having a sparse lunch in the sun in Churchill Square, more to the benefit of the pigeons as I couldn’t manage the bread! Back to the RSCH for 2.30pm and meeting the delightful and very efficient snr. Charge Nurse Laura Pena (from Valladolid!) I was on my Methylpred. by 3pm and all finished at 4.15pm. My weight today – 79.5kgs. My blood results I will get tomorrow, but I will record here:-
Wbc: 4.30; Hbn: 9.1; Plt: 165; Neut: 4.20
Picked up today by Cath and home at 5.30pm. Phone calls either side of dinner, including one cancelling the rugby at Twickenham with Richard. It just does not make sense trying to do something like that – however I might want to go – when I know I would not be up to the journey or the sitting around in the cold. A shame, but it is the right decision. I will have to watch it on TV instead. Bed at 9pm again and slept well.

Breakfast: Mango and passion fruit juice; yoghurt, cereal, mango, honey; toast, marmalade; green tea with lemon.
Lunch: Ham sandwiches – only managed the ham and fed the pigeons with the bread!; apricot fool.; banana.
Dinner: Avocado pear; Salmon fillet (just about managed) couscous with sun dried tomatoes, asparagus and peas (couldn’t eat it all); banana.

Wednesday 7th March 2007

Slept well through the night despite my long evening doze. 10.30 appointment at RSCH and the Methylpred was started at 11.10am. My weight today is 79kgs and my blood counts are- Wbc: 5.80; Hbn: 9.5; Plt: 178; Neut: 5.70. All going up – a bit of a surprise! But my legs are definitely down - and keeping down all day. Self injected my Campath after lunch.

I had asked Santa to check on the delivery of the Campath to RSCH from Kings. By afternoon Santa had no joy with her own pharmacy, rang some numbers I gave her for Kings and found the haematology pharmacist, who was sitting on it waiting for someone to tell her what to do with it!! Anyway it will be with me by courier on Monday. Feeling tired by 5pm so a bit of a lie down on the settee; also feeling funny in the stomach although ok in myself – if that makes any sense. Bed at 9pm and slept! Managed to wake up at 2.25pm for my late evening Corsodyl, Nystatin and Aciclovir! Then again at 5.45am for my Itroconozole. Ugh!

Breakfast: Yoghurt, cereal, mango, honey; toast, marmalade; green tea with lemon.
Lunch: Chilli bean soup with toast croutons; ham sandwiches – only half; yoghurt, mango and ginger.
Dinner: Avocado pear; pork fillet (just about managed) couscous with sun dried tomatoes, sugarsnap peas (couldn’t eat it all); lemon cake (sort of ok!).

Tuesday 6th March 2007

Had a good breakfast with a Metoclopramide tablet to be on the safe side. Spent the morning on emails, etc. as my RSCH appointment was at 1.30pm. I am given my blood count results for yesterday. They are - Wbc: 0.8; Hbn: 8.6; Plt: 138; Neut: 0.8. – which makes me neutropenic already! I have another blood sample taken as they don’t seem right and the results are very different. So I have yet another sample taken to be sure. These come out very similar to the 2nd set and are - Wbc: 3.8; Hbn: 9.0; Plt: 171; Neut: 3.70. So I am not neutropenic after all !! My weight today is 79.5kgs.

No hot chocolate today – didn’t feel I could take it. Involuntary hiccoughs started just like the last time! Slept on the settee from 8pm to 10.45pm.

Breakfast: Yoghurt, cereal, banana, honey; toast, marmalade; green tea with lemon.
Lunch: Ham sandwiches; yoghurt, honey and ginger; banana.
Dinner: Avocado pear; smoked haddock, wild rice, tomatoes, peas and beans; yoghurt, honey and ginger.

Monday 5th March 2007

Today was the start of my Methylprednisolone treatment at the RSCH at Brighton. We left home at 8.05am and had a much easier drive than I expected. Found the special Cancer Car Park right by the hospital and were parked in at 8.35am. It costs £1 per day – really good. We were met in the nice new – and quiet - Haemotology Unit by ch/nurse Santa, who looked after me very well throughout the morning. A slight delay while she found a doctor to prescribe the Methylprednisolone, but blood samples taken anyway, although I didn’t get the results until Tuesday. Also booked my appointment times for the rest of the week, which vary every day, plus a time and day for the Pentamidine nebuliser in just over a week’s time. My weight today is 80.0kgs.

So 1 hour of Methylpred. started about 10.30am – I get 2 grams in 100 grams of saline solution - followed by a 15 minute flush and we were away just before midday. Felt tired as the drip was delivering and had a little doze I think. Once home, Tina was soon away to work and I self injected my Campath. After lunch I sat in the conservatory with the laptop, feeling slightly tired, but otherwise so obvious effects. However, my afternoon hot chocolate didn’t go down so well as usual and after taking my Itroconozole I felt slightly nauseous. About 5.30pm I lay on the settee and slept. Tina came come from work about 6.15pm and I still slept on until 8pm. My stomach felt funny, I was not hungry, so no dinner. At 10.30pm after taking my Corsodyl mouthwash and Nystatin I had a sip of water, felt decidedly nauseous and took a Metoclopramide tablet. I slept well.

Breakfast: Orange juice; yoghurt, cereal, kiwi fruit, banana, honey; hot chocolate.
Lunch: Chilli bean soup; ham sandwich; banana.
Dinner: Nothing