Two weeks in Howard 1 Ward RSCH

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.