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.
Friday, 3 October 2008
The Ceiling Falls In
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 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
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.
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.
Tuesday, 2 September 2008
Waiting for the Start of My New Treatment
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.
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.
Monday, 25 August 2008
The Ceiling is Falling in – More Treatment ASAP
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.
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.
Saturday, 9 August 2008
Back with a Bump, Blood and Biopsy
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!
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
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!
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