Friday 25th May 2007
We are up to Kings by 10.30am and after having my blood test are soon seeing Andre Jansen, the transplant co-ordinator, to get some insight into the donor search process. I wanted to include some information about this on to my cll blog as it may be of some use to others in a similar predicament. The big news is that the Anthony Nolan Trust has identified four potential donors for me, with the possibility of two more. These are described as “C” code mismatches. The search entails comparing my blood with batches of six others against about 250 identification features or “codes” within the blood cell make-up. A “C” code mismatch is where more than 230 codes match, including all the key ones. If nothing better is found then a “C” code mismatch would be “adequate” for a transplant. The prospective donor is then asked to give a blood sample for health screening and subject to his or her agreement, the stem cell harvesting can go ahead, either at Kings or in the donor’s home country if he or she comes from a long way away. Steve Devereux is upbeat about things. I have no detectable enlarged lymph nodes, although the March CT scan showed that I had some in my abdomen. My blood results today are also pretty good: Wbc: 0.9; Hbn: 10.7; PLT: 184; Neut: 0.8; Lymph: 0.1. However my iron levels are rather low and he will request the RSCH monitor them over the weeks to come. My weight today is 75.3 kgs. and blood pressure 152/77. He wants me to continue with the remaining eight weeks of the treatment programme to get my bone marrow in the best possible state for the transplant. It now appears that the most likely time for CMV to emerge is within the first four to six weeks of treatment, with a lesser chance of a recurrence after that. So CMV may not be as much a problem as earlier thought and Methylprednisolone is not expected to drive down the white cell count any further. We are now exactly half way through the 16 weeks of the clinical trial treatment programme, so it is time again for intermediate progress checks. I will have to return to Kings in just over a week’s time for a CT scan and a bone marrow sample - ugh deep joy! But the other good news from today is that my “clean” diet does not mean I cannot drink draught beer. We mentioned it in passing to Steve Devereux and he could not understand why it was on the list of things to avoid - so I was able to celebrate the all round good news at lunch at the Sun and Doves with a pint of Old Speckled Hen! We shared our good news with Anna and Matthew over the telephone and text messages went out to sisters and brothers. This has been the best day we have had for months and the best news I have entered on my chronic lymphocytic leukaemia blog since I started it.
Week of 21st to 28th May 2007
I start the week with my Campath injection and then call Jonathan Samuel to discuss that he check with Steve Devereux that I will need my Campath supply topped up when I go up to Kings on Friday. I also make an appointment for Friday with Andre Jansen to talk about the bone marrow donor search. I have my weekly blood test at the RSCH on Tuesday. The results are good: Wbc:1.0; Hbn: 11.4; PLT: 168; Neut: 0.8; Lymph 0.1; my weight is 75 kgs. and my sodium levels are back to normal! I make provisional arrangements for the Methylprednisolone sessions for next week. That day Anna calls from France to tell us that they are approaching Dieppe at the end of their drive up from Greece, but that she has a sore throat and a cough - so they cannot come to us to stay, which is a shame. However, as the weather is so good, we later arrange to meet up for a later afternoon picnic at the Jack and Jill. That way we see each other, but with Anna sitting “down wind”, should manage to avoid any nasties being transferred to me! We are the centre of attention for ten rather large horses, of the Cob variety, who wanted to join us eating the food! It is Thursday and unfortunately, due to my neutropenia I have to cancel going to the ex-CSD gathering at Lewes to mark Chris Pascoe’s retirement. I hope to catch up with him later. Instead I spend Thursday dibbling in the back garden and fixing up a window box outside the kitchen window. I am feeling very good in myself and have no effect from the Campath, other than possibly being a little tired on “Campath days”. On Saturday we have visits from Peter Felchlin en route from L.A. to the Scottish golf courses, Anna with Eva - going up to Mull themselves on Sunday - and Matthew with Ella, who is staying with us until Monday. The good weather has gone, the clouds are heavy and the temperature has dropped at least 5 Celsius. Typical for a Bank Holiday!
Saturday 26 May 2007
Monday 21 May 2007
Campath Resumed
Week of 14th to 20th May 2007
This week starts with Tina and my going to Thanet for the funeral of my Aunt Winnie - the last of my Mum’s family of seven sisters and three brothers. She was 89, but had not been well of late. Often crematorium services can be rather dour, depressing affairs, but Win’s was a good one, befitting her cheerful disposition. Her coffin entered to “String of Pearls” and left to “Tea for Two Cha - Cha -Cha” - she so loved dancing! It was great to see cousins and second cousins - some for the first time in 40 or 50 years! Had I known what my blood test the next day told me, I should not have been there! The Tuesday blood test results at the RSCH are: Wbc: 0.8; Hbn: 11.4; PLT: 92; Neut: 0.7 - so I am now neutropenic! My weight is 76 kgs; I am also told that at 150 my sodium level is too high. I have a problem with that because I am finding that all my food tastes far too bland without additional salt. I am sure that it is not good to add more salt, but I am only human! Now I have to go back on to the “clean diet” regime, avoid largish gatherings and - a thousand curses - not drink draught bitter!
Next morning I have a surprise visit from the blessed Mary - Mary Roberts - en route home to Devon. This is great as we update each other on things, especially the many and various happenings amongst her former family tribe!! Terry and Lesley come for tea in the afternoon. We indulge ourselves in some extremely vintage Dizzy Gillespie on a CD I had not yet played. I also check with Paul Hill at the PRH that I should have a blood test there on Friday before giving myself Campath in case my neutrophils are below 0.5. In the event they are not and surprisingly my blood results are up on Tuesday’s at: Wbc: 0.9; Hbn: 11.7; Neut: 0.8; and Lymph: 0.04 - except my lymphocyte count which could hardly be much lower! I am feeling really good in myself, although I am finding that I am tired in the afternoons and am tending to have a doze for an hour or so. Is that real or am I being lazy? - the jury is out on that one! My taste buds are still a bit “up and down” depending on what I am eating. For example, bread is bland, but a bacon sandwich is good, especially with Tabasco sauce and meat tastes good. I am still not sure that I am tasting wine, especially red wine, as I used to. It seems that the long arm of Methylprednisolone stretches a good ten weeks and maybe more, as that is how long it has been since I last had any. Having said that my daily medications, particularly the Itroconozole and Nystatin, cannot help but dull the tastebuds as well.
We have Linda and Paul down for the weekend. Tina and Linda go shopping in Tunbridge Wells on Saturday while I do a few “just jobs”, like cutting the front grass and taking down the untidy collection of pictures on the wall above the staircase - a long overdue assignment! Paul and I go to the Royal Oak for a beer and sandwich lunch and I have to make-do with a Guinness, rather than indulge in a pint of Harveys. I am not sure if I should have had a beef sandwich, cut off the joint, but I did - to hell with it! Stephen and Sue join us for dinner of Spanish pork casserole, with a prosciutto and melon starter, cheese and a apricot and almond pie - delicious! Sunday was a low-key affair. I decided I should not go to Church, which would no doubt be a full house with John doing a folk Mass. After a light lunch, we dozed the afternoon away! and then had a dinner of leftovers from last night.
Week of 7th to 13th May 2007
Started with a Bank Holiday and Sarah and Paul round for lunch. I was due to resume my treatment programme on Tuesday with a self administered dose of Campath. Steve Devereux had advised that I should do this under supervision at the RSCH day unit as I had not had Campath for over eight weeks, I might get a reaction and it would be wise to be there as a precaution. Besides I also needed to have a weekly blood test. Would you believe it - I rolled back my shirt sleeve to see where my blood sample might best be taken and there was a slight rash! - another on the other arm and more slight rashes in various other places. I was checked over by the SHO and - maybe psycho-sematically - felt a bit heady, as if I was about to start a cold or something, bearing in mind my tendency to have allergic rash reactions to cold-type infections. Two hours after my arrival at the day unit it was suggested that I should go ahead and take the Campath. But I was not happy. How would they be able to tell if any further rash that developed was a response to the Campath or not? So I refused to do it and arranged to come back on Thursday. Besides Terry and Lesley, who had brought me down, had been waiting around town for two hours already and it was unfair to ask them to wait yet another hour until I was safe to leave - or more if that wasn’t the case!
Wednesday and I was visiting the Job Centre - Plus building in Haywards Heath to deliver my application form for Incapacity Benefit. “Are you signing on?” was the greeting from the burly, but somewhat older-than-might-be-expected security guard. I was able to see an official without even having to wait - which was a surprise. My application now goes on to the regional centre at Bognor and I should hear something in a few weeks. My P45s are copied and given back to me and I am given a copy of my doctor’s certificate, in case I have further need of it. On Thursday I am back at the RSCH, courtesy of Keith, having my Campath injection supervised and ensuring there is no reaction. Before the injection I am checked over again by Panos, the SHO. This is followed by a further check over by Paul Hill, who is here with his Thursday clinic. Nice to see him again. I get a print-out of Tuesday’s blood results, which are:- Wbc: 1.9; Hbn: 11.7; PLT: 96; Neut; 1.2; and Lymph: 0.2. I hadn’t noticed until Tina pointed out later that my white cell counts had gone down quite a bit since my last blood test two weeks ago - and I haven’t had any treatment!
On Friday I have a check over at the dentist and I need a couple of small fillings - “patching up” as he described it. He asked me about the discolouring of my lower front teeth. I am rather embarrassed to say that I had not noticed that my teeth had been blackened. I can only put this down to the Corsodyl, as it had done similar to my tongue. Hopefully when I get on to the mint version, this will all change. We have Val and Michel over for dinner on Saturday evening and Jim and Cath round for lunchtime drinks on Sunday. Meanwhile I have a Campath injection on Saturday. I have felt well all week and am constantly remarking to people I meet that all the time I am not having treatment, I am looking and feeling fine - for the time being!
This week starts with Tina and my going to Thanet for the funeral of my Aunt Winnie - the last of my Mum’s family of seven sisters and three brothers. She was 89, but had not been well of late. Often crematorium services can be rather dour, depressing affairs, but Win’s was a good one, befitting her cheerful disposition. Her coffin entered to “String of Pearls” and left to “Tea for Two Cha - Cha -Cha” - she so loved dancing! It was great to see cousins and second cousins - some for the first time in 40 or 50 years! Had I known what my blood test the next day told me, I should not have been there! The Tuesday blood test results at the RSCH are: Wbc: 0.8; Hbn: 11.4; PLT: 92; Neut: 0.7 - so I am now neutropenic! My weight is 76 kgs; I am also told that at 150 my sodium level is too high. I have a problem with that because I am finding that all my food tastes far too bland without additional salt. I am sure that it is not good to add more salt, but I am only human! Now I have to go back on to the “clean diet” regime, avoid largish gatherings and - a thousand curses - not drink draught bitter!
Next morning I have a surprise visit from the blessed Mary - Mary Roberts - en route home to Devon. This is great as we update each other on things, especially the many and various happenings amongst her former family tribe!! Terry and Lesley come for tea in the afternoon. We indulge ourselves in some extremely vintage Dizzy Gillespie on a CD I had not yet played. I also check with Paul Hill at the PRH that I should have a blood test there on Friday before giving myself Campath in case my neutrophils are below 0.5. In the event they are not and surprisingly my blood results are up on Tuesday’s at: Wbc: 0.9; Hbn: 11.7; Neut: 0.8; and Lymph: 0.04 - except my lymphocyte count which could hardly be much lower! I am feeling really good in myself, although I am finding that I am tired in the afternoons and am tending to have a doze for an hour or so. Is that real or am I being lazy? - the jury is out on that one! My taste buds are still a bit “up and down” depending on what I am eating. For example, bread is bland, but a bacon sandwich is good, especially with Tabasco sauce and meat tastes good. I am still not sure that I am tasting wine, especially red wine, as I used to. It seems that the long arm of Methylprednisolone stretches a good ten weeks and maybe more, as that is how long it has been since I last had any. Having said that my daily medications, particularly the Itroconozole and Nystatin, cannot help but dull the tastebuds as well.
We have Linda and Paul down for the weekend. Tina and Linda go shopping in Tunbridge Wells on Saturday while I do a few “just jobs”, like cutting the front grass and taking down the untidy collection of pictures on the wall above the staircase - a long overdue assignment! Paul and I go to the Royal Oak for a beer and sandwich lunch and I have to make-do with a Guinness, rather than indulge in a pint of Harveys. I am not sure if I should have had a beef sandwich, cut off the joint, but I did - to hell with it! Stephen and Sue join us for dinner of Spanish pork casserole, with a prosciutto and melon starter, cheese and a apricot and almond pie - delicious! Sunday was a low-key affair. I decided I should not go to Church, which would no doubt be a full house with John doing a folk Mass. After a light lunch, we dozed the afternoon away! and then had a dinner of leftovers from last night.
Week of 7th to 13th May 2007
Started with a Bank Holiday and Sarah and Paul round for lunch. I was due to resume my treatment programme on Tuesday with a self administered dose of Campath. Steve Devereux had advised that I should do this under supervision at the RSCH day unit as I had not had Campath for over eight weeks, I might get a reaction and it would be wise to be there as a precaution. Besides I also needed to have a weekly blood test. Would you believe it - I rolled back my shirt sleeve to see where my blood sample might best be taken and there was a slight rash! - another on the other arm and more slight rashes in various other places. I was checked over by the SHO and - maybe psycho-sematically - felt a bit heady, as if I was about to start a cold or something, bearing in mind my tendency to have allergic rash reactions to cold-type infections. Two hours after my arrival at the day unit it was suggested that I should go ahead and take the Campath. But I was not happy. How would they be able to tell if any further rash that developed was a response to the Campath or not? So I refused to do it and arranged to come back on Thursday. Besides Terry and Lesley, who had brought me down, had been waiting around town for two hours already and it was unfair to ask them to wait yet another hour until I was safe to leave - or more if that wasn’t the case!
Wednesday and I was visiting the Job Centre - Plus building in Haywards Heath to deliver my application form for Incapacity Benefit. “Are you signing on?” was the greeting from the burly, but somewhat older-than-might-be-expected security guard. I was able to see an official without even having to wait - which was a surprise. My application now goes on to the regional centre at Bognor and I should hear something in a few weeks. My P45s are copied and given back to me and I am given a copy of my doctor’s certificate, in case I have further need of it. On Thursday I am back at the RSCH, courtesy of Keith, having my Campath injection supervised and ensuring there is no reaction. Before the injection I am checked over again by Panos, the SHO. This is followed by a further check over by Paul Hill, who is here with his Thursday clinic. Nice to see him again. I get a print-out of Tuesday’s blood results, which are:- Wbc: 1.9; Hbn: 11.7; PLT: 96; Neut; 1.2; and Lymph: 0.2. I hadn’t noticed until Tina pointed out later that my white cell counts had gone down quite a bit since my last blood test two weeks ago - and I haven’t had any treatment!
On Friday I have a check over at the dentist and I need a couple of small fillings - “patching up” as he described it. He asked me about the discolouring of my lower front teeth. I am rather embarrassed to say that I had not noticed that my teeth had been blackened. I can only put this down to the Corsodyl, as it had done similar to my tongue. Hopefully when I get on to the mint version, this will all change. We have Val and Michel over for dinner on Saturday evening and Jim and Cath round for lunchtime drinks on Sunday. Meanwhile I have a Campath injection on Saturday. I have felt well all week and am constantly remarking to people I meet that all the time I am not having treatment, I am looking and feeling fine - for the time being!
Consultancy at Kings – no Treatment – and a Few Days in Honfleur
Week of 30th April to 6th May 2007
With some helpful guidance from Anna, we found a rather attractive B & B in Honfleur on the internet, via Alistair Sawday’s website and I was lucky enough to be able to book three nights there - Tuesday to Thursday incl. Tina had to work on the Monday, otherwise we would have made it four nights. So we were up at the crack of dawn on Tuesday and catching an early ferry from Newhaven to Dieppe. Had a superb break in a great B & B in an extremely attractive town and the weather was really good - much as it was in the UK. Naturally we ate very well, although I must confess I did not enjoy the fish as much as I had hoped - and the north French coast tends to go a bundle on fish! I guess it is the effects of all my medication still dulling my taste buds. We also did a good deal of walking; nothing too energetic, but enough to get the sun on our faces. So I came back looking quite healthy, despite not having had any treatment for the past eight weeks! I am saying to people that I feel a bit of a fraud. I am looking well because I am not having treatment and that the moment they try to make me better that’s when I start to look ill (!!) We went for Sunday lunch at Stephen and Sue’s and walked off our meal with the two mile stroll home.
Friday 27th April 2007
The day of my much awaited appointment with Dr. Steve Devereux at KCH. My bloods were once again pretty good - Wbc: 2.6; Hbn: 12.2; PLT: 173; Neut: 1.9; Lymph: 0.29. He was very pleased with both blood and bone marrow results, the latter showing less than 5% CLL remaining - which is apparently a good situation after just five weeks of therapy. Having said that, he pointed out that 5% of several million cells was still quite a lot of cancerous cells! I still have a small lymph node which can be felt in the right armpit and a slightly extended spleen. However he had not received the CT scans nor the result of the bone trephine from the RSCH. The news on the donor front is that the searches of UK databases have been negative and they are now searching international ones. We were clearly disappointed that the UK searches had not been successful but were assured that it is still “early days” on the search for a donor overall. The screening process is lengthy, batching six samples at a time for examination. They will try to find a donor who has had CMV as that would give some CMV immunity in the donated bone marrow. We met the new bone marrow transplant co-ordinator Andre Jansen. I want to find out more about the donor search and resolved afterwards to see if I can get a separate appointment with Andre next time we come up. We are told that CMV could return as a result of further treatment and also during the bone marrow transplant process. Fortunately I had not contracted CMV disease. Although not explained and not asked, I subsequently believe this to be where the CMV has gone on to affect organs in the body, such as the intestine or lungs. Because of the likelihood of a further CMV reactivation, had there been a donor ready in the next six weeks, he said he would have recommended going for a transplant immediately and not giving me any more treatment. As that is not the case, we wants me to resume the programme and push down the CLL levels even further. Now that CMV had appeared on the scene, we are going to have to balance the benefit of further treatment with the risk of reactivation. I no longer need to take the anti-biotic Ciprofloxacin but I should continue having weekly blood tests to monitor CMV and progress with the Campath.
Our intention back in early 2006 - before the ceiling fell in on us (!) - had been to celebrate our 40 years of married bliss with a family dinner, a grand party and a weekend in Florence. In the end it was a relatively quiet celebration, albeit really enjoyed by us. So we asked Steve Devereux to delay the resumption of the treatment programme for a week so that we could have a few days in the north of France to make up for not being able to go to Florence. He is more than pleased to say “yes”. After a little lunch at the Sun and Doves we leave for home not quite sure in our minds if the morning had been as positive for us as it had seemed for Steve Devereux. I suppose that is natural, given the lack of news on the donor search. Once home I spend the evening and a fair bit of Saturday updating family and friends. I don’t want this to sound wrong - and I really enjoy doing it - but it is really very tiring keeping everyone informed!
Week of 23rd to 29th April 2007
Spent this week “recovering” from the rigours of our Sunday celebration. Everywhere in the house there are still little prints of our wedding photograph hanging on red ribbons from hooks and room lights - they are not coming down for some time yet! Had my weekly blood test at the RSCH on the Monday with stable results once again: Wbc: 4.4; Hbn: 12.0; PLT: 181; Neut: 3.7; Lymph: 0.1; and CRP >5. In my pursuit of the Incapacity Allowance claim I saw my GP, Richard Cook, in the afternoon to obtain a sickness note. He was keen to get an update on how things are going for me, including my lengthy stay in hospital. It’s great to have a GP who is interested in how things are after referring you on to consultants. I am feeling fine, no doubt from a combination of not having any treatment, having also now recovered from my chest infection problems and a week of lovely weather!
With some helpful guidance from Anna, we found a rather attractive B & B in Honfleur on the internet, via Alistair Sawday’s website and I was lucky enough to be able to book three nights there - Tuesday to Thursday incl. Tina had to work on the Monday, otherwise we would have made it four nights. So we were up at the crack of dawn on Tuesday and catching an early ferry from Newhaven to Dieppe. Had a superb break in a great B & B in an extremely attractive town and the weather was really good - much as it was in the UK. Naturally we ate very well, although I must confess I did not enjoy the fish as much as I had hoped - and the north French coast tends to go a bundle on fish! I guess it is the effects of all my medication still dulling my taste buds. We also did a good deal of walking; nothing too energetic, but enough to get the sun on our faces. So I came back looking quite healthy, despite not having had any treatment for the past eight weeks! I am saying to people that I feel a bit of a fraud. I am looking well because I am not having treatment and that the moment they try to make me better that’s when I start to look ill (!!) We went for Sunday lunch at Stephen and Sue’s and walked off our meal with the two mile stroll home.
Friday 27th April 2007
The day of my much awaited appointment with Dr. Steve Devereux at KCH. My bloods were once again pretty good - Wbc: 2.6; Hbn: 12.2; PLT: 173; Neut: 1.9; Lymph: 0.29. He was very pleased with both blood and bone marrow results, the latter showing less than 5% CLL remaining - which is apparently a good situation after just five weeks of therapy. Having said that, he pointed out that 5% of several million cells was still quite a lot of cancerous cells! I still have a small lymph node which can be felt in the right armpit and a slightly extended spleen. However he had not received the CT scans nor the result of the bone trephine from the RSCH. The news on the donor front is that the searches of UK databases have been negative and they are now searching international ones. We were clearly disappointed that the UK searches had not been successful but were assured that it is still “early days” on the search for a donor overall. The screening process is lengthy, batching six samples at a time for examination. They will try to find a donor who has had CMV as that would give some CMV immunity in the donated bone marrow. We met the new bone marrow transplant co-ordinator Andre Jansen. I want to find out more about the donor search and resolved afterwards to see if I can get a separate appointment with Andre next time we come up. We are told that CMV could return as a result of further treatment and also during the bone marrow transplant process. Fortunately I had not contracted CMV disease. Although not explained and not asked, I subsequently believe this to be where the CMV has gone on to affect organs in the body, such as the intestine or lungs. Because of the likelihood of a further CMV reactivation, had there been a donor ready in the next six weeks, he said he would have recommended going for a transplant immediately and not giving me any more treatment. As that is not the case, we wants me to resume the programme and push down the CLL levels even further. Now that CMV had appeared on the scene, we are going to have to balance the benefit of further treatment with the risk of reactivation. I no longer need to take the anti-biotic Ciprofloxacin but I should continue having weekly blood tests to monitor CMV and progress with the Campath.
Our intention back in early 2006 - before the ceiling fell in on us (!) - had been to celebrate our 40 years of married bliss with a family dinner, a grand party and a weekend in Florence. In the end it was a relatively quiet celebration, albeit really enjoyed by us. So we asked Steve Devereux to delay the resumption of the treatment programme for a week so that we could have a few days in the north of France to make up for not being able to go to Florence. He is more than pleased to say “yes”. After a little lunch at the Sun and Doves we leave for home not quite sure in our minds if the morning had been as positive for us as it had seemed for Steve Devereux. I suppose that is natural, given the lack of news on the donor search. Once home I spend the evening and a fair bit of Saturday updating family and friends. I don’t want this to sound wrong - and I really enjoy doing it - but it is really very tiring keeping everyone informed!
Week of 23rd to 29th April 2007
Spent this week “recovering” from the rigours of our Sunday celebration. Everywhere in the house there are still little prints of our wedding photograph hanging on red ribbons from hooks and room lights - they are not coming down for some time yet! Had my weekly blood test at the RSCH on the Monday with stable results once again: Wbc: 4.4; Hbn: 12.0; PLT: 181; Neut: 3.7; Lymph: 0.1; and CRP >5. In my pursuit of the Incapacity Allowance claim I saw my GP, Richard Cook, in the afternoon to obtain a sickness note. He was keen to get an update on how things are going for me, including my lengthy stay in hospital. It’s great to have a GP who is interested in how things are after referring you on to consultants. I am feeling fine, no doubt from a combination of not having any treatment, having also now recovered from my chest infection problems and a week of lovely weather!
Recovery from Hospital and our 40th Anniversary
Week of 16th to 22nd April 2007
I spent this week getting myself back into the swing of home life as opposed to being institutionalised in hospital. Having said that, I had to go back Monday and Thursday for blood tests in Haematology Outpatients. I won’t hear anything about the CMV samples unless something crops up but otherwise my results were excellent: Wbc: 3.9 and 4.4; Hbn: 12.3 and 12.5; PLT: 177 and 206; Neut: 3.3 and 3.6; Lymph: 0.1 and 0.2; and CRP both >5.
Jim took me down to Brighton on Thursday, which was good. We had a pint at the Bull at Ditchling on the way home just to show how much back in the swing I feel. On Wednesday evening we had decided on a short pre-dinner walk but only got as far as Sue and Richard Cattell’s when we were hailed in for a glass of wine. We spent the next hour enjoying a chat, sitting on their terrace with a gorgeous view across to the downs and hearing about their trip to the Galapagos Islands and the Amazon Rain Forest. It doesn’t get much better than that! People are saying that I look well. I don’t think they are just trying to be polite. Perhaps I have caught a bit of this glorious sun we are having.
My medication – both liquid and tablet – is still giving me a nasty taste in the mouth at various times of the day, which doesn’t help when I am supposed to keep up the calorific intake. But at least I am having a break from my treatment and I am not having anti-biotics and anti-virals pumped into me any more! One thing I have not mentioned before is the discolouring of my tongue, which first came to notice while I was in hospital. It has turned a rather nasty black colour, but the black looks more like a fungal growth on the surface of the tongue and I can scrape it off both with a tooth brush and my finger nail. No one has said what is causing it, but I suspect that it might be the Corsodyl mouthwash. I had been supplied with a pink coloured version in RSCH, as opposed to the clear mint flavoured one I had before, when I did not have this happening. Whatever is causing it, it looks awful, but I don’t think it is affecting my tastebuds. Anyway I shall be reverting to the mint version soon as that is what I will get from the chemists. To show willing as an escapee from treatment for a few weeks, I cut the front grass and even went for a short cycle ride to check out how fit I am – or not. I have to confess my legs wobbled a bit when I got off the bike! Anna and co. drove down from Mull on Thursday. The timing has been perfect as Saturday is Anna Swallow’s wedding in London, Sunday is our 40th anniversary and they are off to Athens on Tuesday for their photo assignment – probably four weeks in all including driving there and back.
I have now eventually driven our new car, albeit it took me to Saturday to do it. It is rather good! I have also applied for Incapacity Benefit via a very helpful Jobcentre Plus organisation. I received guidance from my local office, then called the national call centre from where a clerk called me back and we completed the electronic form over the telephone. They will send me the form to sign and return with some items of validation, such as a sick note or letter from my GP. What a good service! As I have been self-employed since last May, I receive no employer’s sick pay, so the £81 per week I think I will get will be very useful. It will be retrospective to 29th January, when I stopped working and it is not means-tested. We have also had good news from Greek Islands Club, the company with which we booked our big celebration holiday in July on Kefalonia. Having pleaded our case to the company boss, particularly the bit about my not having holiday insurance, we are going to be able to rollover our deposit to next year. This is really great as we thought we could well have forfeited the £900 deposit!
We had a lovely day on Sunday celebrating our 40 years - with beautiful weather. We had drinks in the New Inn garden, Anna and Matthew cooked lunch and then we had friends in for champagne and cake about 4pm. Paul Wehrle did a surprise CD of the event. I gave Tina a
ring and she gave me a smart new laptop computer. I am feeling good and have done since coming out of hospital. Although sometimes the tastebuds are a bit funny, I am enjoying beer, wine and food. But then it is six weeks since the end of my last lot of steroids.
I spent this week getting myself back into the swing of home life as opposed to being institutionalised in hospital. Having said that, I had to go back Monday and Thursday for blood tests in Haematology Outpatients. I won’t hear anything about the CMV samples unless something crops up but otherwise my results were excellent: Wbc: 3.9 and 4.4; Hbn: 12.3 and 12.5; PLT: 177 and 206; Neut: 3.3 and 3.6; Lymph: 0.1 and 0.2; and CRP both >5.
Jim took me down to Brighton on Thursday, which was good. We had a pint at the Bull at Ditchling on the way home just to show how much back in the swing I feel. On Wednesday evening we had decided on a short pre-dinner walk but only got as far as Sue and Richard Cattell’s when we were hailed in for a glass of wine. We spent the next hour enjoying a chat, sitting on their terrace with a gorgeous view across to the downs and hearing about their trip to the Galapagos Islands and the Amazon Rain Forest. It doesn’t get much better than that! People are saying that I look well. I don’t think they are just trying to be polite. Perhaps I have caught a bit of this glorious sun we are having.
My medication – both liquid and tablet – is still giving me a nasty taste in the mouth at various times of the day, which doesn’t help when I am supposed to keep up the calorific intake. But at least I am having a break from my treatment and I am not having anti-biotics and anti-virals pumped into me any more! One thing I have not mentioned before is the discolouring of my tongue, which first came to notice while I was in hospital. It has turned a rather nasty black colour, but the black looks more like a fungal growth on the surface of the tongue and I can scrape it off both with a tooth brush and my finger nail. No one has said what is causing it, but I suspect that it might be the Corsodyl mouthwash. I had been supplied with a pink coloured version in RSCH, as opposed to the clear mint flavoured one I had before, when I did not have this happening. Whatever is causing it, it looks awful, but I don’t think it is affecting my tastebuds. Anyway I shall be reverting to the mint version soon as that is what I will get from the chemists. To show willing as an escapee from treatment for a few weeks, I cut the front grass and even went for a short cycle ride to check out how fit I am – or not. I have to confess my legs wobbled a bit when I got off the bike! Anna and co. drove down from Mull on Thursday. The timing has been perfect as Saturday is Anna Swallow’s wedding in London, Sunday is our 40th anniversary and they are off to Athens on Tuesday for their photo assignment – probably four weeks in all including driving there and back.
I have now eventually driven our new car, albeit it took me to Saturday to do it. It is rather good! I have also applied for Incapacity Benefit via a very helpful Jobcentre Plus organisation. I received guidance from my local office, then called the national call centre from where a clerk called me back and we completed the electronic form over the telephone. They will send me the form to sign and return with some items of validation, such as a sick note or letter from my GP. What a good service! As I have been self-employed since last May, I receive no employer’s sick pay, so the £81 per week I think I will get will be very useful. It will be retrospective to 29th January, when I stopped working and it is not means-tested. We have also had good news from Greek Islands Club, the company with which we booked our big celebration holiday in July on Kefalonia. Having pleaded our case to the company boss, particularly the bit about my not having holiday insurance, we are going to be able to rollover our deposit to next year. This is really great as we thought we could well have forfeited the £900 deposit!
We had a lovely day on Sunday celebrating our 40 years - with beautiful weather. We had drinks in the New Inn garden, Anna and Matthew cooked lunch and then we had friends in for champagne and cake about 4pm. Paul Wehrle did a surprise CD of the event. I gave Tina a
ring and she gave me a smart new laptop computer. I am feeling good and have done since coming out of hospital. Although sometimes the tastebuds are a bit funny, I am enjoying beer, wine and food. But then it is six weeks since the end of my last lot of steroids.
Two weeks in Howard 1 Ward RSCH
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.
We have a quiet weekend with my getting used to real life again. On reflection it was a good thing we cancelled Southwold; I would not have been up to it. I am finding it quite difficult eating the larger dinners we usually have at home. I had not realised that the hospital dinners were smaller portions. I am also being exhorted to eat more and put on some weight. The fact that I am 73.5kgs (ie 11st 8lbs) and therefore roughly the weight I was in my early 40s has got nothing to do with it! The weather has been absolutely beautiful for the past two weeks and this weekend is no exception. We had a lovely Sunday lunchtime sandwich and drink in the sun at the Royal Oak. Now that’s a great welcome home if ever there was one! Dinner of a superb Spanish pork casserole with enough left over for me to have for lunch tomorrow.
Friday 13th April 2007
I am up at 6am checking my weight – 73.5kgs then getting my early morning anti-biotics until gone 9am. I am feeling pretty good this morning. I still have nasal catarrh and coughing from the chest, but nothing like earlier days. It is 11.45am and I just finish doing my beard with my new beard trimmer when Vicky Tindall arrives with Panigiotis and good news. I have two – yes two! – more negative CMV results from Kings and I am free to go! At last!! I will have to wait – no doubt interminably – for my takeaway medications so Tina will come about 4pm to collect me. I suggest she brings another holdall as I have accumulated so much stuff here over the past 5 weeks. It is yet another blue sky day, so a great one for escaping hospital. I update my blog and send a text message to all and sundry. I also get a message to Fr. Foley to thank him and Sr. Peter for their kindnesses over these past weeks. He calls by about 4pm and I learn that Tina’s old friend from playgroup, Molly Ball, is still alive and now resident at St Joseph’s Home next to the church here in Kemptown – which is good news.
Because of the seriousness of CMV and its potential to be reactivated, even after the treatment I have just received, appointments are made in Haematology Outpatients for next Monday and Thursday for me to have blood samples taken. A decision on the resumption of the chemotherapy programme is held in abeyance for a week or so. Paul Hill is on holiday until Monday 23rd (West Indes for the Cricket World Cup!) but the decision will no doubt rest with Steve Devereux. Despite the best efforts of the hospital pharmacy to hold us up, we eventually get away at 5.30pm. In the meantime I get today’s blood results, which are:- Wbc: 3.9; Hbn: 10.8; PLT: 120; Neut: 3.5; Lymph: 0.1; and CRP: < 5.0. We have a relatively quiet evening making and receiving lots of phone calls.
Reflections on nearly five weeks in hospital:
I thought a week in Kings was experience enough of being an in-patient and I never expected this would be following-on so swiftly. I can honestly say that I was not bored witless until the last week, especially with the real prospect of a further weekend looming. I kept myself pre-occupied reading and doing my blog – but no TV! It seems that I am always able to fill time with something, useful or otherwise. Perhaps I am a chief exponent of Parkinson’s Law – whatever! I thought the nursing staff on Howard 1 were really good – once I had established one important rule – and the catering and cleaning team was excellent. Yet again the overall experience was one where I realised that there were plenty of people a lot worse off than I was – and poor Eng Wye was the most obvious example of that. Bearing in mind the current national past-time of berating the NHS, hospital care – or lack of it – and the inadequacies of doctors, consultants, nurses and the management at all levels in the NHS, I can only speak from my own personal experiences in both Kings and the RSCH in Brighton. I have been so impressed by the treatment and care I have received and I could hardly ask for better.
Thursday 12th April 2007
I sleep well and unusually am not awake until past 6.30am. My BP is 162/73, temperature 36.6c and my weight now 73.5kgs. Sr. Peter visits to give me Holy Communion. She is followed shortly by Vicky Tindall. She stops my Spirolactone as my fluid retention seems to be under control and we need only continue with the Furosimide. Still no news on the CMV front, but arrangements are made for a bone marrow sample to be taken at 3.30pm assisted by a small dose of intra-venous sedative. I have never been offered this before. I also have the long vaunted echo-cardiogram to follow up on my possible Mitro-valve prolapse. This is carried out on me by one Jean Shrimpton – but no – not the famous one! Anyway it turns out I don’t have a prolapse, simply a leaky valve, or as Wayne puts it – a slow puncture! Whilst waiting in the cardiac unit I speak with Aileen Sherry from church, who is having her pacemaker checked over.
My blood results today are Wbc: 7.2; Hbn: 10.9; PLT: 132; Neut: 6.7; Lymph: 0.1; and CRP: < 5.0. At 2.30pm I get a surprise visit from Keith for about an hour, as he has been seeing a client in town and called by on spec. - which was nice. At 3.30pm I have good news from Vicky Tindall that my blood sample of 2nd April is negative for CMV – yippee! And I am on the phone to Tina straight away and texting soon afterwards. I then have my bone marrow sample procedure, made considerably more comfortable by the use of the sedation and which includes having oxygen nearby in case it is needed! I would not have minded having that before! Tina visits me shortly afterwards but I am a bit dozy so she doesn’t stay long and then, after dinner, I sleep for a couple of hours. My evening obs. are BP: 157/74 and temperature 36.4c. I catch up on my blog around 10pm.
Wednesday 11th April 2007
I wake to notice that the fluid in my legs, knees and thighs is definitely much less and my weight check shows that I am now 73kgs – a 2kgs loss in 24 hours! My weight today is the lowest since I have been monitoring my weight from January 2003. Over these four years my average weight has been in the range of 81kgs with a low of 77kgs in the spring months of 2003. So this is quite a significant development as 73kgs (11st 7lbs.) is a weight I have not been since my early 40s!
My early morning obs are BP: 158/61 and temperature 36.4c. Tina is day off today, which is good as it is another sunny day. I have a visit from Jim Rodgers with beret fresh from La Favorita in the Plaza Mayor, Madrid. 45 minutes later Barry and Hilda Sexton arrive, closely followed by Panigiotis – but no CMV results yet. My 11am obs are BP: 160/76, temperature 36.2c. Whilst I am still coughing, etc., I feel that my catarrh today is less problematic. My blood results today are:- Wbc: 16.5; Hbn: 11.3; PLT 138; Neut: 15.8; Lymph: 0.2; CRP: < 5.0. Again this shows how sensitive I am to GCSF, which I had injected yesterday evening. These white cell counts are the highest I have had since the very early days of chemotherapy back in February, but I am still immune compromised through the low Lymphocyte counts. I must ask if Lymphocyte count recovery can only occur naturally and what critical factors come into play when its count continues to be as low as it is. It’s 2.20pm as I am typing this and Sr. Peter calls by with a short prayer for me. She will be coming late morning tomorrow with Holy Communion. My early evening obs. have my BP higher at 172/76 and temperature 36.1c. but by 10pm my BP had returned to its more regular range at 160/72.
Tuesday 10th April 2007
This is now my 5th week here! I have an early start with Foscarnet from 6.15am. My weight this morning is 75kgs – down 2kgs from yesterday. My legs seem to have lost some fluid, but 2kgs? Not sure about that - still very curious. BP: 165/80 and temperature 35.7c. Amazingly my blood samples are lost somewhere in the “pod” transportation system, don’t get to haematology and have to be done again. Today is Kings sample day as well. This is the second time in a week that samples have been lost. What is going on! I see Tim Corbett again today. Nothing to note from that except that I still have a little rattling in the lower lung and there is no CMV news yet from Kings.
My bay companion for the past few days, Dave, is discharged this morning and replaced by Wayne who has moved down from another bay to make way for two women patients. Wayne has a similar condition to mine but it started as Non-Hodgkins Lymphoma. He is currently having different treatment from me although he is also looking towards a bone marrow transplant. This doesn’t make complete sense to me as he is being treated by the oncology team working on this ward, whereas I am overseen by haematology, so I can only assume our conditions are not that similar. He is not very well and has a number of aches, pains and symptoms that are the cause of some concern. He is quite desperate to get out of hospital as he is a self-employed joiner and has work piling up which he has had to put on hold. I have two hours rest in the afternoon before Tina comes. A cloudy start to the day has turned bright and sunny, which is good news for Matthew and co. who are spending the week at Camber – hi de hi campers!! My evening obs. are BP: 168/81 and temperature 36c. My blood results today are: Wbc: 2.7; Hbn: 10.4; PLT: 125; Neut: 2.4; Lymph: 0.1; CRP: 5. The white cell counts show the GCSF effect yet again as this is day three and I have an injection this evening. My 9.30pm observations are BP: 162/82, temperature 36.2c – Foscarnet, reading, sudoku and bed.
Monday 9th April 2007
I wake to sense that my legs are down a bit from yesterday but my weight is the same – 77kgs – maybe it’s a mirage as I felt the same yesterday! My early morning obs. show BP: 168/80 and temperature 35.6c. I get just the Ganciclovir this morning so I am no longer hooked up after 8am – which makes a nice change. I am told that the pharmacy has tracked down some Foscarnet in London – Kings in fact - and some is on its way by taxi – would you believe it?! My blood results today are: Wbc: 4.2; Hbn: 10.4; PLT: 112; Neut: 3.9; Lymph: 0.1; CRP: 7 – this CRP is the lowest we have reached after starting to note it on 14th March, when it was 69.
Tina is in at midday to see me and has a lunch invitation to Steve and Sue’s, which is super. She also has a supper invite to Cath and Jim’s, so that takes care of cooking for today at least! She has found time to prune the apple tree as well! Tim Corbett renews his acquaintance with us after a week’s break. He prescribes me some linctus for my throat, which does not seem to be problematic from his view. He will also arrange for the taking of a bone marrow sample and for me to have an echo cardiogram to check out my suspected mitro valve prolapse – as promised but never done at Kings! We discuss the vagaries of the Easter break on CMV results coming back from Kings, suggesting that I could be here all week until we get those magic two zero readings. I have a relaxing afternoon, newspaper reading and catching up on my blog and at 5pm have my Foscarnet. So I only have one infusion of it today. My late afternoon obs are BP: 152/76 and temperature 36.1c. Evening spent reading and doing sudoku.
Sunday 8th April 2007 (Easter Sunday)
I am 77kgs this morning At 5.30am – there is no rhyme nor reason to my weight fluctuations as the fluid on my legs appears to be down a bit from yesterday. My BP is 169/80 and temperature 36.0c. Sister Peter comes to give me Holy Communion just as I am starting my toast! John Duncan also comes early to give his blessing for my trip out today. My blood counts today are: Wbc: 10.1; Hbn: 10.2; PLT: 109; Neut: 9.6. A pattern has emerged in which the days I have GCSF are followed by high white cell blood counts, typically 9 or 10, whereas the days following no GCSF are back around counts of 3 or 4. Decision:- drop the GCSF to once every three days. I have observations at 11am, which show BP: 150/73 and temperature 36.1c. I have permission for an afternoon “leave pass” for Easter Sunday and Tina arrives at 12 midday to take me to Matthew and Charrise’s at Worthing. It is also my first sighting of our new car! We have a superb roast lamb - Clive’s Hurstpierpoint lamb of course! And I enjoy two pints of Old Speckled Hen, even if it is brewed in Bury St. Edmunds! I get back to the RSCH about 5.15pm in time to order something light for tea. I do some newspaper reading for an hour or so and then am sending up zzzs for a couple of hours waking about 9pm with a sore throat. I put this down to all the coughing I am doing. I still have an endless amount of mucus coming up from my lungs, much of which is still green – and this is after four weeks of this cold! However it is affecting my temperature, which stays at 36.1c this evening with my BP also at 150/73. I am told there is a problem with the Foscarnet which should have been ordered from the pharmacy by Thursday with it being a long Bank Holiday weekend – but it wasn’t! They have been able to rustle up a bottle from somewhere for tonight but tomorrow may be problematic – great! So I get my Foscarnet started at 10.45pm finishing around midnight.
Saturday 7th April 2007
My early morning observations are BP: 167/76, temperature 35.7c. My weight is 75kgs. I don’t know what is happening here as my weight is going up and down like a yo-yo with the fluid in my legs suggesting a higher weight today, as opposed to yesterday! I have a walkabout after breakfast and showering and find the little sunken garden Tina told me about. It could do with a clean up with rubbish and fag ends everywhere. Otherwise it is lovely there in the sun and out of the wind. I have a new neighbour who was a milkman until his cancer forced him to take sick leave. At least he gets paid something. I find out that my previous neighbour died in the night. He was very ill and was clearly in great pain. It was good that he was moved to a separate room to allow him to die in relative peace and dignity. His family are devastated but knew it was inevitable. My blood results today are: Wbc: 4.0; Hbn: 10.4; PLT: 113; Neut: 3.7; Lymph: 0.1; and CRP: 11.
John Searle comes to visit at 11.30am bringing the order of service and music for the Easter 10.30am service. It is great to chat and to hear how successful the confirmation classes have been, particularly as far as the candidates participation in the music goes! I just knew John would find a way of getting more kids involved in the Sunday liturgy – he has so much to offer.
I then sleep soundly from 1.30 to 3.30pm and then read until Tina comes. She stays for an hour and a half leaving about 7.15pm. My evening observations show BP:152/72, temperature 36.4c. I then sleep for an hour and a half – I obviously need it! – and then read up to midnight.
Friday 6th April (Good Friday)
I have another fitful night with my neighbour suffering quite badly next to me and needing the nurses to help him. However I am still awake and set for my blood samples and the start of my anti-biotics at 6.30am. Amazingly, by 8am we have the blood results! – Wbc: 8.2; Hbn: 10.2; PLT: 118; Neut: 7.8; Lymph: 0.1. My legs seem to have lost fluid since last night and my weight shows 81kgs – 1kg down from yesterday. I decided not to put on the compression tights whether it is the right thing or not! Matthew visits me early – about 9.30am as it is the best time for him with the children itching to do things over the long weekend. He is dead pleased that I am coming for Sunday lunch. I haven’t had any exercise for the past two days so I go looking for a garden Tina has told me she found recently. I search in all the wrong places and later she shows me where it is. It is sheltered, gets the afternoon sun and is ideal.
My 1pm observations are BP: 156/70,and temperature 36.6c. I am being looked after by Laura the haematology out-patients staff nurse from Valladolid. Paul Hill sees me just after lunch. No more CMV results, but he takes me off the Tazocin and Clarithromycin and we resume Ciprofloxacin instead. This is good news as my afternoon out on Sunday will not be squeezed between two doses of Tazocin. I still have a rattle in the bottom of my lung. I am very tired and sleep from 2pm to 4.30pm with occasional interruptions of nature! The diuretics are definitely working well today! Tina comes from about 4.45 through to 6pm. She brings me a bunch of flowers Steve Scott had got for me, which was a lovely thought on his part – “to brighten up my room”. Unfortunately the ward rules do not allow flowers, so Tina takes them home. My neighbour is very distressed and we decide to go to the day room where I have my dinner. Fortunately a single room in the ward has been vacated this evening and my neighbour is moved there. He is surrounded by an even larger number of family, including his brother, and they all go with him to his room. I understand that he has bone cancer and does not appear to have long to live. It is all very sad.
Thursday 5th April 2007
I am having somewhat fitful nights as I am wearing the compression tights with my pyjamas and they are most uncomfortable. I am awake at 6.30am for taking of blood samples and having the regular clutch of anti-biotics. My BP is 166/86 and temperature 35.7c and my weight is still 82kgs. Sr Peter comes to give me Holy Communion at 10am, after which I cancel our “gourmet” weekend at the Crown, Southwold. Even if I escape during next week, I have concluded I will probably need to take it easy for a while. I may not be able to eat and drink everything I normally would and it is quite possible I might not enjoy the weekend at all.
I was expecting Steve Pitt to visit this morning and he brought Owen Horaeu along as well. Then Vincent arrived closely followed by Bill Swallow. Bill did not stay long as he obviously realised the group was too big, bearing in mind my poor neighbour next door. Everyone has to vacate to the day room when Paul Hill and Panigiotis arrive on their rounds. I get good news that my latest CMV count is now 182. My blood results also arrive, sowing: Wbc: 3.3; Hbn: 10.2; PLT: 109; Neut: 3.1; Lymph: 0.1; and CRP: 14. I am just looking to settle down to an afternoon nap when Dave Lloyd arrives responding to my Welfare contact. He catches up on my “case” and I then try to get some shut-eye before Tina comes. I am not sure if I actually went off to sleep or not! My neighbour is surrounded by his family today; it is all very tragic as he is so ill. Tina stays until my dinner arrives and the rest of the evening I read my paper and doze. My 10pm observations are: BP:130/72, temperature of 36.3c. As my calves and ankles seem to have reduced in size I decide not to wear my compression tights in bed.
Wednesday 4th April 2007
Another 6.30am start for Tazocin, Foscarnet and Ganciclovir all in quick succession. My early morning observations show BP:140/79 and temperature 36.5c. I have nurse Sophie for the first time. I discover that I am allergic to the plastic tape called Transpore which is used to secure the valve end of the PICC line. It cuts into my skin and does not breath. So that is something else to add to Derma Film on the allergy list! The Ward Manager, Gail Pottinger shows an interest in my case as they do not often have haematology patients on her ward. After a big coughing and blowing session, I am feeling a lot clearer this morning. I have a visit from Simone and Martin Garrad from the old office. Their arrival coincides with Vicky Tindall, very early on her rounds. There are no CMV results from Kings yet and she stops the Teicoplanin as it has run its course. Although my cold is feeling a lot better I still have a rattle in the bottom of my lungs. Erik also visits at 1pm after the others have gone. I then realise that I have not had my blood samples taken today. I am told that there was not request form for it from the doctor. Sophie checks with Haematology and confirms “Yes, they should have requested it”. So she takes a late sample.
My neighbour has gone home today and the bed is taken by a very sick man. It has been decided that I shouldn’t double up on the dosage of Furosimide as the potassium level in my blood is low and would go lower with a higher dosage. So the Furosimide stays the same and I am additionally prescribed Spirolactone. I don’t seem to get any benefit from the additional medication today and find I am now at home to Mr Blobby again! The new SHO, Dr Panigiotis (Panos) Stamoulos, comes with good news of the latest CMV count from Kings dated 29th March. It has gone down from 5652 to 383, which is great! In order to build up the potassium to the right level, he also prescribes me Sando K, a soluble tablet with a pleasant taste, to be taken three times daily.
My observations at 7pm show BP: 151/70 and temperature 36.9c. I query with Sophie that I should be having an injection of GCSF today, to find out that the medication chart shows it to be given on alternative days. I have never been told this, in fact I had assumed it was either every day or as necessary depending on the blood counts. We are unable to decipher a squiggle that we take to be a signature. I raise the issue the next day with Paul Hill, who happens to have John Duncan with him. It turns out that this “signature” belongs to Vicky Tindall. I make the point that I was not told what the GCSF regime was to be and should have been. There is no apology but at least I make sure they know I am on the ball about things. I get my blood results, which are:- Wbc: 4.3; Hbn: 10.4; PLT: 101; Neut: 4.0; and Lymph: 0.0. Poor Eng Wye is very thin and weak, not eating food and is in great pain. He has to have morphine and oxygen and goodness knows what else! I have my Foscarnet and Tazocin before settling down for bed. The news today is all about the release of the 15 sailors and marines captured by Iranian Revolutionary Guards in the waters off the Shat-al-Arab waterway between Iran and Iraq 13 days ago. The facts about how their release was arranged are unclear, except that the Iranian president Mahmoud Ahmadinejad was able to claim magnanimity by releasing them as an Easter present to Britain, coinciding as it does with the Jewish Passover and the birthday of Mahomet.
Tuesday 3rd April 2007
Not such a great idea of Matthew’s as I could not get undressed – or did not bother to – and slept fitfully on top of the bed, albeit comforted by my I-pod. Had the usual early morning anti-biotics and breakfast before checking that my weight was now 82kgs! Then realised that my legs had swollen up overnight to the elephant legs-size they were after I had the Methylprednisolone. So I am back to compression stockings and a doubling of the Furosimide dosage! It is a bright, fresh morning, so I took a short constitutional round the block – it clouded over later. Seen by Dr Sarah at 11.30am finding that my chest was now more or less clear, although recognising I still had a lot of stuff down there. Checked out the lymphocytes issue, finding out that they produce antibodies, which mount the immune response, whereas neutrophils fight bacterial infection. So there you are! No visitors today – Peter had rang to say that Sue had gone down yesterday evening with a bad dose of some kind of ‘flu bug, possibly picked up on the plane journey back from Madeira. She needed a visit from the night call doctor she was so bad!
My potential afternoon doze was interrupted by a visit from Dr. Nisha Nadwadkar from the urology team following my contact last week with Mr. Nawrocki’s secretary. I related the history of my urinary infection problem from the notes I had made at the time – I knew they would come in handy sometime! – mentioning that there had been no recurrence. She checked me over, including establishing by the traditional method that my prostate was ok! She also checked my last CT scan and noticed that my bladder appeared to be enlarged. I will have a further CT scan of the bladder to see if there is any problem there. She also wanted to arrange for me to have an endoscopy, at which point I insisted that Steve Devereux be consulted before any such procedure. I had raised the urinary problem at one of our meetings and his view was that he would not want me to have any intrusive examinations while I was on the clinical trial programme. The last word was that there would be a discussion tomorrow over this.
Tina comes at 4.30pm with an appointment letter from Kings. I am to see Steve Devereux next on 11th May. She is not happy that the urology people have got themselves involved,
although it cannot be helped given my referral from Richard Cook and my recent contact with Mr Nawrocki’s secretary. But it’s just another thing to worry about. 6.30pm and I am still on intra-venous Teicoplanin for the possible infection at the point of entry of the PICC line, followed by Tazocin via a bolus. I also get my blood results, some of which are very different from yesterday’s – which raises the question of accuracy or error. They are: Wbc: 3.8; Hbn: 10.8; PLT: 114; Neut: 3.6; CRP: 15; and Lymphocytes: 0.1. I get a print–out of this data and looking at it in more detail realise that there is a column which gives the desired range for each count as would be expected in a healthy person. The lymphocyte count should range between 1.3 and 3.5 – so that’s useful to know and explains why I have been told that I am lymphopenic. Five days after Tim Corbett had directed that I should be on Introconozole liquid as opposed to capsules – for greater effect - the pharmacy has at last deigned to comply with his wishes. I am only half pleased about this as I cannot stand the stuff. I have to take it twice daily on an empty stomach and at least an hour before eating – so it’s back to the early morning and late afternoon pleasure - with a grimace! - I knew so well over the past 2 months. Hey ho! In fact it’s nearly time for it now, as I am typing this at 8.15pm. My 9pm observations have BP: 159.74 and temperature is 36.7c. We then get to the time when I am due for my Foscarnet, but Matthew, the night staff nurse, sees that the medications record shows that I have already had it with the entry signed by Mary, who was looking after me during the afternoon and early evening. I insist that I have not had it, as I would specifically remember because it comes in a glass bottle and I have about two thirds only of it. Matthew is satisfied but needs Mary’s say-so, which eventually he gets. Honestly it’s a good job I am on the ball!
Over the past few days I have noticed that I have a nasty taste in the mouth, mainly in the afternoon and evening. Fortunately it does not interfere with the enjoyment of my dinner, but it makes me not want to drink water – which defeats the object of trying to flush through my system to get rid of the excess fluid in my legs. I guess it is all about the large cocktail of medications I am being plied with.
Monday 2nd April 2007
Well I am now into week 4 of my incarceration in RSCH, albeit now in Howard 1. Matthew is very efficient and has me on a Tazocin bolus, followed by Foscarnet and then Ganciclovir drips before I have had a chance to blink my eyes! My morning observations are taken at 7.15am and 9am with BPs of 143/77 and 136/67 respectively; my temperatures are 36.5 and 36.2c. My weight is still 79kgs, albeit after breakfast. I check this out with the scales on Howard 2 and find them telling me I am 80kgs, so I don’t quite know what to make of it! I have blood taken, with one CMV sample for Kings among them at my insistence. Apparently it would have been passed over had I not mentioned it. I also insist that I my name is Roland and not “my love” or “darling” as far as the nurses are concerned. I notice that the ward Statement of Philosophy talks about treating patients with dignity and as individuals. I then have a huge coughing session, making up for not having one yesterday!
It is a beautiful day outside so I take a constitutional round the building in the sun. I am visited by Brian Joyce and then Mia Morris pops in as well, so that was nice. Poor Brian – he recently lost Celia – and had a lot of difficult experiences down here at RSCH. He was pleasantly surprised by the décor and ambience of my ward and - even more – by the choices of meals on the menu! Not what he expected. In fact I had a really good steak and onion pie for lunch while he was with me! I am also seen by Dr Vicky Tindall. My chest seems to be clearing as things are moving up to my head. I am full of catarrh but at least I am able to shift it with no great difficulty. After catching up on my blog, I settle down to a relaxing afternoon, made even better by having a wonderful aromatherapy foot massage from Ann, a volunteer helper who does massages for patients as a past-time. Tina comes in just after 4.30pm and stays until my dinner arrives at 6pm. She didn’t feel like swimming this morning – too tired – but will probably go for an evening walk instead as it has been such a lovely day. Her last few weeks have been exhausting in all sorts of ways – mentally draining with anxiety over me and simply the physical effort to be constantly answering the telephone every evening from well meaning callers!
My 4.45pm observations show BP: 155/72 and temperature 36.6c. I also get my blood results which show a marked rise in the various counts as follows:- Wbc: 8.5; Hbn: 11.0; PLT: 124; Neut: 8.2; CRP: 11 and Lymphocytes: 0.1. – I must learn a bit more about lymphocytes as they seem to be assuming greater importance now. Dozed off completely listening to Humph’s last Best of Jazz programme after 40 years of Monday nights broadcasting it – but fortunately he is returning in three months’ time! My 10.30pm observations were BP:132/72 and temperature 36.3c. For some reason the Foscarnet did not arrive on the ward until gone midnight – or I think that was the time as I was asleep! Consequently Matthew thought I might just as well have the rest of the night with a saline drip operating as I would be getting my Ganciclovir around 6.30 to 7am.
Sunday 1st April 2007
I have a bolus of Tazocin at 6.45am and up and doing at 7am, showered and shaved. My weight according to the ward scales here is 79kgs – up 2 from yesterday. Is it the scales? – possibly. All my morning infusions are delivered without problem via the PICC line, which has been kept “open” by a small dose of Heparin anti-coagulant in the exposed part of the line. As the morning progresses the sun is streaming through my window along with a cool breeze sliding through a small gap of open window. Tina visits about 11am through to Tim Corbett’s round at 1pm. My cold seems to have moved off my chest and into my head, slightly affecting my hearing, but not to any serious extent. Consequently I have stopped using the Ventalin nebulizer as it doesn’t seem to be necessary. Discussed my possible discharge – as we always do - he is still concerned that I am severely lymphopenic. My lymphocyte count is virtually non-existent and that still makes me immune suppressed and just as vulnerable to infection as if I were neutropenic.
My early afternoon observations are BP: 131/66 temperature 36.4c. I read and doze through the afternoon before having my early evening doses of anti-biotics and dinner. I then doze again, wake up, resume blogging and have my daily Guinness. I heard from cousin Barbara earlier that my aunt Win was admitted to hospital in Margate on Thursday with an acute blockage problem of the bowel and had missed celebrating her 89th birthday. However, this evening she is considerably better and may be discharged back to her nursing home very soon. My blood results for today are:-
Wbc: 2.5; Hbn: 10.2; PLT: 111; Neut: 2.1; CRP: 8. Looking good, but I still have a dose of GCSF to help the white cell recovery. Overall I feel today has been a good day with my cold moving on a degree into another phase and I am feeling positive about my blood counts.
Three Weeks in Howard 2 Ward RSCH
Three Weeks in Howard 2 Ward RSCH
Saturday 31st March 2007
I am awake at 5.40am – intricate ablusions again as was the case twice during the night! I am up and doing by 6.30am and checking my weight – 77kgs. I am on a Tazocin drip at 6.55am. through the cannula. Julie had tried a bolus but it hurt like mad so we changed it for a drip, which was a lot better. Then followed Ganciclovir while I had breakfast and then at 9.35am I was given the Foscarnet. This is very painful through the vein in the back of my hand and I need Paracetomol to reduce the discomfort. I have a 2 hour break from the pain of drugs through the cannula until 12.30pm when I have my next dose of Tazocin for half an hour. Meanwhile Tina has arrived. At 1.10pm I have my first observations of the day – which are BP: 143.75 and temperature 36.8. I am immediately told that I am moving to Howard 1 downstairs where I share a side bay with a chap called Colin Hillman from Willow Way, Hurst. What a small world! I am immediately seen by Tim Corbett. My CMV count is 5652 as of a sample examined at Kings on 29th March – I assume taken on Monday 26th March. This is considered to be good progress and every reason to continue with the combination of Ganciclovir and Foscarnet as prescribed. The chest infection has now moved into my bronchial tubes and the anti-biotics will continue on that problem as well.
I am on the ground floor with a window side bed facing south as before in Howard 2 and straight out on to the front car park. I am made very welcome by staff nurse Ali and charge nurse Leigh, who gets to work on my PICC line. The good news is that the line has cleared, no doubt due to the best efforts of Phil upstairs last evening, but with the Urokinaze having a delayed effect, so I am able to have my Foscarnet via the line and the cannula removed from its painful position on the back of my hand. My observations this evening, taken at 7.15pm and 9.25pm were BP 138/68 and 127/67, temperature 37 and 36.3c. respectively. I spend the evening getting back into “With Their Backs to the World” by Asne Seierstad – fascinating.
Friday 30th March 2007
Up and doing at 7am and observations taken at 7.20am:- BP 150/71, temperature 35.9c and weight 76.5kgs. Start ed a unit of blood at 7.30am for two hours. At 9.50am Phil has a problem flushing my PICC line ahead of my morning Ganciclovir to the extent that it is necessary to fit a cannula – rather painfully to my right wrist. I have visits from Sarah, Terry and Lesley and then Tim Corbett. The CT scan result looks good with less problem visible than is obvious from examining my chest himself. He puts me back on Tazocin and off Ciprofloxacin to treat my chest. Also I am prescribed Foscarnet twice daily to complement the Ganciclovir whose dosage is reduced by half. He advises that we keep to the results from Kings as the definitive position rather than their own laboratory. This ensures consistency of results as they are inevitably a lot more accurate. He aso wants me to swap back to Itroconozole in liquid suspension rather than the capsules.
Belatedly I get the Ganciclovir which was due at 10am followed by the Tazocin both via the cannula. Meanwhile Phil tries to clear the PICC line with a Urikinaze drip for nearly two hours but is unsuccessful and is still unable to flush it but cannot understand why not. I get my blood results from samples taken earlier today. These are:-
Wbc: 1.3; Hbn: 10.1; PLT: 122; Neut: 1.0. Not good and I will need GCSF this evening.
My 4.45pm observations are BP 131.71; temperature 36.6. I have a third unit of blood this afternoon which again is transfused via the cannula. But this is very painful despite the three hour rate we let it run at. Flushing afterwards is very painful. This has been a most frustrating day with much of the time lost attempting to get infusions into me that don’t want to go in and every effort being made to clear the PICC line so that we get the best use out of it.
Add to that some of my new medications have not come to the ward from the pharmacy and we are collectively fed up. I catch up on my weblog from 7pm after Tina has gone home for the evening. My observations at 9.45pm show BP:146/70 and temperature 36.7c. Meanwhile I have a cannula inserted by a doctor, rather painfully in the back of my right hand. I was given my Tazocin via a bolus, surprisingly easily, followed by the new anti-biotic – Foscarnet – to complement the Ganciclovir and tackle the CMV. I was asleep on the bed from about midnight to 1.30am and then properly to bed, after some intricate ablusions advised as necessary in conjunction with the Foscarnet!
Thursday 29th March 2007
I am awake at 5am and catnap through to 6.30am My 8.30am observations show: BP 149/67 and temperature 36.3. My weight is 76kgs again – consistent if nothing else as I am checking it at 7am every morning before having a shower. Guido sees me to tell me that he personally labelled and marked Monday’s CMV blood sample for dispatch to Kings, so he cannot understand why it was thought it never went. He checks further and verifies that it did go. So what all the fuss was about yesterday, I don’t know!! Just very annoying to not know whether things are going right or not. Meanwhile Tina has been in contact with Viki Bevan at Kings about the blood and about what is happening to me here. Her checks show that the blodd sample has not arrived! She will speak with Steve Devereux about my case as it is possible he might want me transferred up there. 10.45am and Sister Peter brings me Holy Communion and an hour later I have my consultant’s visit from Dr Duncan. “Just keep going with the current treatment” is his opinion.
I then have visits from Colin Dunbar and Vincent Meagher, plus magazines to keep me from being bored. As if I could be! I doze off after lunch until 3pm when I go for the high resolution CT scan of my chest. I cough heartily with every deep breath I take – and I have to do at least a dozen. Still it shows that the problem is clearly not going away yet. My 1.30pm observations are BP: 126/59 (that’s low!) temperature 36.5c. I get a text from Cath and Jim to say they found La Favorita beret shop in the Plaza Mayor in Madrid and have bought me a beret, size 57! Great! Tina is with me when we are told by Dr Vicky Tindall that Tim Corbet and Steve Devereux have conferred today and decided that Ganciclovir should be supplemented by another anti-biotic called Foscarnet in order to drive down the CMV count more effectively and the dosage for the Ganciclovir will be reduced by half to make way for the other. RSCH has been independently testing my CMV samples separate from sending off samples to Kings. Their latest count is 1250 – I am not told what day the sample is and we don’t know how that compares with the sample for Kings taken on the same day. Later I have my Teicoplanin by bolus and Jo starts me with a unit of blood. I will have the second tomorrow. My evening observations are: BP: 137/63; temperature 36.7.
My blood results for today are:- Wbc: 3.0; Hbn: 8.3; PLT: 122; neut: 2.7; CRP: 9.0.
Wednesday 28th March 2007
Awake at 6am for the start of the Today programme and showered at 7am. I am still coughing for England! My morning observations are BP: 145/67 temperature 37c. My weight is 76kgs. Following a referral by Richard Cook, I have an appointment with the urology consultant Mr Nawrocki at PRH on 16th April about all the urinary infection problems I had back in September and October last year. I had already put off a February appointment as I was on one of my day visits to Kings. I had mentioned the problem to Steve Devereux to which he had commented that you can get CLL in the bladder. Coincidentally or otherwise my urinary problems had occurred at the same time as my CLL was obviously returning, but since then there has been no recurrence. Mr Nawrocki’s secretary advised that she would mention this to him on Monday on his resumption from holiday, so he could consider the best way forward, given my present position and Steve Devereux’s comment. He works from this hospital as well and might visit me.
I have a visit from Michel in the morning and Tina arrives about midday in time for Sarah Hartley’s round. My chest is still causing some concern. They want to be sure that the infection is bacterial and not fungal. She expected I might have had the high resolution CT scan requested yesterday – but no. My haemoglobin level is such that I will need transfusing, probably with two units and probably tomorrow. I later find out that the CMV blood sample taken on Monday from me was not sent to Kings, so I have to have another taken. I had been told that two CMV blood samples per week should be taken from me; on Mondays and Thursdays. This is the second week that the Monday sample has not gone to Kings. Once is an unfortunate mistake; but twice smacks of muddle and incompetence. It is my opportunity for discharge by getting two negative samples in a week that is being jeopardised and this is extremely frustrating and annoying. My observations at 2.20pm show BP: 155/75 and temperature 36.4c. Tina is having lunch with Wendy Arscott in town, but will be back later in the afternoon. Meanwhile I am sitting in my chair by the window typing but getting very annoyed about the smell of cigarette smoke drifting up and through my partially open window from the builder working in the room immediately below mine and who has his window wide open. I know that as I went down to check it out! Apparently the hospital “no smoking” policy does not apply to the builders working on refurbishment of Howard 1 ward below. I feel a Victor Meldrew moment coming on, but must suppress it to keep my blood pressure down!
I spent some time scanning through Chris Pascoe’s book on Prince2 project management ready for Matthew coming in this evening. I made a few notes of points which I thought might be of relevance to him. I will leave it up to Matthew to decide if he wants to take the book with him and he does. Tina comes back from her lunch having sat and chatted with Wendy from 1.30pm to 4.30pm. Before she leaves to go home I get my blood results, which are good:-
Wbc: 2.8; Hbn: 8.1; PLT: 140; Neut: 2.6; CRP: 13. My haemoglobin level is down further from yesterday, so transfusion is a definite. I also text out an update message mentioning my chest infection and the expectation of being here until after Easter. I get several responses including one from Tim Godwin. Matthew and Charrise bring Ella, Lily and Mia to visit me and we have a somewhat chaotic hour. The girls go out for a short while and Jo is able to give me the Teicoplanin in a bolus, which takes no time at all, rather than a half hour drip. My evening observations are:- BP 142/68 and temperature 36.2c. Having brought my web log up to date I am now in a position to start reading my Asne Seierstad book about Serbia. It has taken two weeks to get here this point!
Tuesday 27th March 2007
I slept an hour and a half on the bed whilst initially listening to the midnight news! Once in bed proper I then slept until waking at 6.40am – with just one night time interruption. No need for my I-pod to get me to sleep and quite the most comfortable night’s sleep I have had since being here. That took long enough for the effects of the Methylpred to wear off! I am showered by 7.30am, my morning weight is 76kgs and my 9am observations are: BP 143/63 and temperature 37.1. I get a phone call from Richard Cutler from his lorry somewhere on the road back to Shorne from Ashford. He has been up since 4am! He is talking about Jane and him coming down for a visit, perhaps next Wednesday. I also receive a parcel from Jeanette containing a selection of bite size bars – a lovely thought. In fact I am eating a Crunchie bar as I type! I have also determined to get back on track with drinking two litres of water per day – which I did. This had slipped since last Friday because I was finding water rather unpleasant to taste, whereas today things seem to be much better. Despite this I bought two small bottles of Lucozade from the hospital shop, hopefully to give me some variety.
Tim Corbett comes to see me at 12.15pm with the news that the CMV count in my blood sample taken on Thursday 22nd is 30346, 23000 down from the initial count from a sample taken during the week commencing 5th March. This is the first indication of the level of progress I have made with the Ganciclovir. This result is after 7 days treatment with Ganciclovir and two weeks after the original blood test. Nonetheless this is not good news at all, because he is still talking about my being here for another two weeks. At the same time he isn’t overly happy that the chest infection is clearing up yet and wants me to have a high resolution CT scan of my chest to see if all is ok. At this stage I can see me being here right through Easter and it looks as if our Southwold weekend is in serious jeopardy. For the first time since being admitted into hospital I am really fed up and particularly so in anticipation of how Tina will be about it. As if prompted by this bad news, my blood pressure goes up in my lunchtime observation – BP 161/72 temperature 36.3c. I spend the afternoon on the laptop until Tina arrives. I fully expect her to be upset and frustrated by the news, but amazingly she takes it very well. I guess she may have already expected it, whereas I was optimistically thinking I would be out at Easter and we would make it to Southwold. We decide we should cancel the weekend, although it transpires they only need 48 hours notice and we have paid no deposit. So we still some options. My evening observations show BP back to 145/72 temperature 35.8c. My blood results today are good news, however, with a rise in my white cell counts as follows:-
Wbc: 1.5; Hbn: 8.5; PLT: 122; and Neut: 1.3. No doubt thanks to GCSF. I spend the evening typing and have finally brought my web log right up to date!!
I have now been in Howard 2 ward for two weeks. I came in with a bad cold and temperature and was told I would be here for the rest of the week while they sort me out with anti-biotics. Then came the news of CMV on the Wednesday and from that point I am on what has turned out to be a rolling two weeks of treatment for it, which is now going to go past Easter. Overall I glad I am on this ward rather than up in haematology, if only for the reason that I get a good signal on my mobile phone! The staff are good and Guido is a gem. The catering and cleaning staff are a delight, almost all of them from the four corners including Lithuania and Brazil. I have a good view out of my window, can watch the world go by if it suits and get sun when it is out. Having my own room I have privacy when I need it and with my keeping late hours in the first week and a bit, I do not disturb anyone else. I can rest or sleep when I want to, read my paper from cover to cover if it takes me, or get on with typing my weblog, albeit I will not get it on to the web for another two weeks at least. I have a very good signal with my mobile phone and am in constant contact with family and friends. I have Holy Communion brought to me on Sundays and Father Foley might pop in from time to time. I have good interactions with the nursing teams, particularly as my room is situated right opposite their station. So I can be as nosey as I want to be. I don’t have much interaction with other patients, some of whom are rather poorly and some I never or hardly ever see. This is a very different experience to what I had at Kings and considering I must be here for another two weeks or so, I am glad I have my own room. I might have run out of energy had I been in a ward with other people for more than a week – and I am looking at four! Today was the first time I can say I was fed up, getting news of the CMV test. It was not so much for myself but in expectation of Tina being disappointed.
Monday 26th March 2007
I had quite a good night’s sleep for a change - no need for the soothing sounds from my
I-pod. Nebulizer , observations, breakfast, Teicoplanin, Ganciclovir and blood samples followed on each other so that I hardly moved out of my bed until gone 11am! Guido had difficulty taking my blood, despite the two consecutive infusions going in without problem - would you believe it! The cannula on the back of my right hand was then removed, making it easier for me to shower, but leaving a tender bruise. Outside there is clear blue sky and it could be a warm day in here as well, as I will get direct sun on my window in the afternoon. I have a black tongue, which was noticed by Vicky Tindall yesterday. I wonder if it is fungal and then forget to tell Tim Corbett about it. My blood test this morning shows that I am even more immune compromised with readings of:-
Wbc: 0.4; Hbn: 8.2; PLT: 113; and Neut: 0.2. On the other hand my early morning check has BP at 154/62 and my temperature 35.9. I don’t know why but I have no further observations today until I ask for them at 10pm. They show my BP as 140/60 and temperature as 36.8. My weight tonight is 77kgs on the same scales as I always use. This compares with 75kgs yesterday morning. What is that all about?
I had a visit just before lunch from Mia Morris, who is an eye consultant working just across the road. That was nice. I also get a visit from Tim Corbett about the same time at which my blood results (as above) are given to me. He attributes the low white cell results to the Ganciclovir. Obviously this means that I am even more immune compromised and he prescribes GCSF to help bring the counts back up again. My chest is still rattling and he thinks I ought to have a focussed CT scan of the chest to check it out. I have a dozy afternoon - perhaps lack of recent sleep catching up on me? – until Tina arrives. Tina is unhappy because she wants me to be home and not here. She doesn’t like it on her own and can’t wait for me to be discharged. It is so unfair for her. I get all the attention and am laid back about the whole thing, whereas she is really the one suffering.
I have a GCSF injection followed by my evening Guinness and dinner. We are still having problems with the PICC line as Sally and Guido try to start me with the Teicoplanin. It is eventually realised that the nozzle on the arm end of the PICC line is the problem and Guido fits another one and off we go. It was broken inside and stopping the flow through it. Perhaps that has been the trouble all along. I call Matthew this evening for a chat as I hadn’t heard from him today. He is frustrated and fed up on my behalf and, typically, reacting just like Tina – they are so alike in temperament, etc. We resolve that he will visit Wednesday early evening with the girls, which will be great. My evening ends with a little typing after the Ganciclovir finishes at 11.30pm.
Sunday 25th March 2007
With the clocks going forward an hour, my “body clock” told me to have another hour of sleep – or at least rest - this despite my sleep pattern still being out of kilter. So my morning call to Tina was at 8am. I decided to check my weight before breakfast – 75kgs. I had just started my breakfast – about 8.45am – when Sister Peter arrived to give me Holy Communion – which was nice. I am feeling a bit of discomfort in the upper arm / shoulder area of my PICC arm and mentioned it to nurse Jo. Am I getting some form of allergic reaction? Blood pressure check at 9.40am gave me 161/65, with my temperature at 36.1c. I then take a walk down to the original part of the hospital to photograph the fascinating plaques and boards on this a quiet Sunday morning. This is followed by my morning Ganciclovir, with no flushing-type problem unlike last night. I then have a late shower and hey presto it is lunchtime already. How time flies when you are enjoying yourself !!! Pleased to say that I am feeling quite a bit better today and feel that the improvement is more marked than other day-to-day comparisons. I am putting that down to the ventalin nebulizer clearing my airways and breaking up all the nasty mucus in my lungs , making it much easier to shift. I am glad I am in here with the CMV because, having finished with the anti-biotics there would have been pressure to get me home, where I would not be resting as much as I am doing here, would be tempted to go out with likely temperature changes affecting my lungs and where I would not have the regular monitoring, chest examinations, etc., prompting more anti-biotics and the nebulizer. In fact my cold would just drag on and on for weeks.
Vicky Tindall comes to see me at 3.20pm. She finds I am still rattling down the bottom of my lungs. We discuss the PICC line and the amount of tenderness in my arm and around the point of entry, where in fact there is reddening of the skin, suggesting a possibility that some infection may be starting or have started. She prescribes me another intra-venous anti-biotic
(Teicoplanin) to deal with this and requests the nurses take a dry swab of the area to see if there are any gremlins on the surface of the skin. Tina visits after having had lunch with the Worthing Mockfords and having had red wine accidentally poured all over her by Ella - including in her ear! We notice that my line forearm is quite swollen and puffy. I point this out to nurse Jo, but a later examination reveals that it is the bandaging up of my arm to protect the end of the PICC, which I did too tightly – Doh !!
I get yet another cannula fitted – this time to the back of my right hand – because they cannot get my Teicoplanin into me via the PICC line. Nurse Julie puts some Hepsal anti-coagulant into the PICC line and lets it stay there doing its stuff for well over an hour. I works and I then get my Ganciclovir via the PICC line. My blood pressure this evening is 141/58 – good! However my temperature is 37.5c the highest I have had since first coming in here two weeks ago. I celebrate a weird day with a Guinness(!) and am in bed at midnight.
Saturday 24th March 2007
Slept fitfully as usual buoyed along by my I-pod, but no coughing during the night. Awake early again but lay-in between 6 and 7until the “Today” programme kicked in. My line arm feels a little easier this morning – or am just getting used to it? Not sure. 7.15am and Euni is in with my medication and the ventalin nebulizer. I am shaved and showered before my 8am breakfast and am ringing Tina to see if she is in better spirits this morning. Pleased to hear that she is, with a determination to go out for a brisk walk, before setting to with housework and shopping. Matthew has asked her to lunch tomorrow, which is great. At 8.20am this morning I am 77kgs, my BP is 148/65 and temperature 36c. I take a walk down to the hospital shop to buy my paper, which is full of background to the Bob Woolmer murder; match fixing mafiosi in India and Pakistan, not to forget the South African Hansie Cronje connection (he was killed in plane crash – don’t forget!). There are also comprehensive reports of the London 21st July 2005 abortive bombing trial and allegations of direct connections between the leader of that group, Al-Quaida and two of the suicide bombers of the 7th July. This has come about because one of the group has broken ranks on the group’s concocted defence storyline. The other main story is about the capture of 15 sailors and marines by Iranian Revolutionary Guards in the Shatt-al-Arab Waterway between Iraq and Iran, for supposedly trespassing into Iranian waters whilst intercepting a dow apparently smuggling vehicles into Iraq. Sounds like a set-up job to me in order to deliberately instigate an international incident – which it certainly has; agent provocateur or what!
Anyway enough of interesting current affairs. Daphne rang to check on my state of health this morning. She also reminded me that they would be over to Paul and Begona’s in Den Haag from Thursday through to Tuesday. 10.15am and I am on my morning Ganciclovir with Jo i/c.
Spent the morning reading the paper from cover to cover – as above! Paul Hill called by at 12.10pm to check me over. He found a small lymph gland in my right armpit, but of no great consequence. My chest is still a bit congested in the bottom left area, but I am on all the right stuff and he is overall happy about my situation albeit it will drag on for a while yet. My after lunch observations at 2.20pm show BP as 150/77 and temperature 36.8c. Tina then rang to tell me she was in Lewes with Sue Pitt, having been shopping and having some lunch there too – what a good friend Sue is! She will have to go home first and then down to see me and arrives freezing cold mid afternoon but is warmed up by the time she leaves at 5.30pm! My 9pm observations show BP as 143/69 and temperature 36.7, so things seem to be stabilising after a couple of days of higher BP. I have a theory on that which is that the higher BP coincided with the trouble we were having with the mid line. Whether I was getting worked up about it I don’t think. I was certainly getting annoyed. So that’s my theory anyway. Meanwhile we were having difficulty getting movement in the PICC line this time and Hepsal was used to help clear what might have been a small blood clotting at the end of the line. It worked and I had my Ganciclovir through the PICC. I have been trying to drink more water, like two litres per day. I am finding this rather difficult because I am not enjoying the taste of water much. Perhaps I should try sampling some of the drinks they have in the shop, like lucozade and similar.
Friday 23rd March 2007
Another fitful night’s sleep with I-pod in ears and awake at 6am and ringing Tina at 7am. Showered at 7.30am As I am now neutropenic, I have to pass on my cereal mix, but otherwise my breakfast is no different, except that I shall have two pieces of brown toast from now on and I do have Tina’s homemade marmalade to go with it, Ymmmmm. My line arm was causing me some discomfort during the night as I could not find a good position. It feels as if my tendons on the inside of my arm are unhappy being stretched and my bicep also feels tender. I mention this to Guido; he wonders if I have a slight allergy to the material of the PICC line – I hope not that would be too awful to contemplate – but we will keep an eye on things and see how or if they develop. I am happy with that, but unhappy with the level of discomfort, albeit there are no problems whatsoever with its operation as intended for blood sampling and infusions.
I go for walk down to the hospital shop to give my legs some much needed exercise, as I am a bit wobbly on them. I take a look up on the first floor of what is the original hospital building, finding some fascinating and historical signs and plaques. I resolve that I must photograph them and will ask Tina to bring my camera bag down tomorrow. Sunday would be a good, quiet morning to take some photos. There is a grand board making reference to King William1V and Queen Adelaide “condescending to visit this hospital on the 4th of November 1833 and, after minutely inspecting every department, were graciously pleased to express their entire approbation of the manner in which it was conducted.” I ask you – how quaint. There is also a commemorative plaque on which is recorded a donation from a Mrs Ralli in 1904 of over £26,000 in memory of her late husband. The amazing thing about this is that his name is carved in full, whereas she is plain “Mrs Ralli”, with no first name – an unfortunate sign of the times no doubt. On arrival back on the ward, at 9.20am Guido has been looking for me to do my morning observations, but having walked up stairs to see these inscriptions etc. and then back up the stairs to Howard 2, my blood pressure (BP) is high at 171/66. In fact my legs were very wobbly and my hips ached from just walking up the staircases. My temperature is ok at 36.3c, my weight 77.5kgs.
The big news today is that the Jamaican Police believe that Bob Woolmer was strangled to death in his hotel room the night after Pakistan were hustled out of the World Cup by Ireland on Saturday – or did they throw the match? During a phone chat with Stephen Pitt, mention was made of beer, including Guinness, just as Guido came in “Guido, any reason why I couldn’t have a daily Guinness, strictly for medicinal purposes?” “I don’t see why not. It will probably do you good, won’t it.” So the green light for some daily pleasure, especially now I have my taste buds back. 11.45am and Tim Corbett visits with Vicki Tindall, Sarah Hartley and Sarah Worcester, introducing herself as the Haemotology Nurse Specialist. I am both neutropenic and lymphopenic. Tim Corbett checks me over and finds that I am wheezing considerably and my chest is rattling down below. He decides to prescribe me ventalin nebulizer four times daily and an anti-biotic called Clarithromycin 550mg twice daily, which both start at 1.15pm My 2.30pm observations show my BP as 155/70 temperature 37.2c
I spend the afternoon relaxing and reading until Tina arrives at 4.50pm. My 5pm observations were BP 146/67 temperature 36.5c. My morning blood results are:-
Wbc: 0.9; Hbn: 8.9; PLT: 120; Neut: 0.9; CRP: 17. So a little improvement on yesterday’s data. At 7.45pm I get a quick visit from Fr. Foley with a blessing. I then have my first Guinness. My fourth set of observations at 8.20pm are BP 152/64 and temperature 37.3c. I am then blogging until quite late, whilst I get my Ganciclovir about 9.45pm. I am in bed at 1am.
Thursday 22nd March 2007
Awake at 1.30am with earache and I have paracetomol to deal with it. I had a longer sleep, waking at 6.30am with a bit of a head and ask for more paracetomol. I make my morning call to Tina and wish Anna bon voyage to Mull via Peter at Streetley tonight. I am shaved and showered by 8am. My Ganciclovir is started off at 9.10am and I have a visit from Paul Hill at 11.10am. He says things are going well overall for me, but they had lost last week’s CMV blood sample intended for Kings, which means that today’s blood sample is the first CMV check that Kings will be able to report back on. Whether this will delay my escape from here I don’t know. Easter looks a forlorn hope, so I make it clear that the weekend after Easter is an absolute must to not be here as we have our Southwold weekend. We will probably be ok for that but I may still be immune compromised. Paul reckons I will go straight on to Campath immediately upon my discharge, whenever that might be, with regular weekly CMV and blood checks at PRH to ensure I am not neutropenic. He is not too bothered about my blood pressure as it is only over two days. “Is it a known side effect of Ganciclovir?” he asks of Vicky Tindall. No reply. I still have plenty of Oedema in my legs and ankles.
I am visited by Erik Shopland between 11.30 and 1.30pm. and we have good chats. My lunch is a Covent Garden red bean and lentil soup (delicious). I am typing my log from 3pm to 4.40pm, when Tina arrives. My BP check shows 151/65 and temperature 36.6c and my 9.20pm check is 149/69. My blood results for today are:-
Wbc: 0.8; Hbn: 9.2; PLT: 107; Neut: 0.8; CRP 20. I am in bed at 12.30am.
Wednesday 21st March 2007
At 3.30am I am awake with a headache and am given paracetomol. I am then awake at 6am having had a head sweaty night with my I-pod on all night again. It is Budget Day and Gordon Brown’s 11th Budget. Following yesterday’s line changes, my right arm is fine. My left arm is better for the change from derma film plaster – to which I now know I am allergic – to a Tegaderm breathable plaster. But I have a sore area on the edge of the crook of my left arm. I am showered at 7am, breakfasted at 8am and I trim my beard at 8.45am. At 9am I am typing on the laptop and am receiving Ganciclovir at 9.50pm. I am seen by (Dr) Sarah Hartley about two days of higher blood pressure, then I have a visit from Chris Pascoe up to lunch time. Tina has been to see Ashley Adsett the Oncology Counsellor for a chat. My BP at 2pm is 142/66. I spend the rest of the afternoon to 5.30pm resting on the bed until Tina and Anna arrive with Eva. Anna is off in the morning to Mull, so we say fond farewells.
At 7pm Jackson is here to check my BP. He tells me to relax my arm, but I did not realise it was tense. My BP is 157/67 my temperature 36.4c and I check my weight at 78kgs. It then occurs to me that my higher BP could be attributed to annoyance or anxiety about the ill fitting Mid Line in my right arm, now removed. Well it ‘s a thought anyway.
Tuesday 20th March 2007
I am awake and reading at 5.45am. No sweats last night, but on/off sleeping with my I-pod going. No coughing first thing. I call Tina at 7am and am showered by 8.15am followed by breakfast. I am delighted to find out that my Itroconozole liquid has been replaced by capsules. I am also back on the anti-biotic Ciprofloxacin, rather than intra-venous Tazocin. At 10.15am ahead of my Ganciclovir, we attempt to draw and flush my Mid Line, but it is no go and a call is put in for the I/V team to come and see me. Matthew and Charrise visit as Charrise had an appointment with her hearing consultant. Urokinase is tried again, but it is very painful and I have to have some paracetomol to ease the discomfort. Tim Corbett sees me at 12.30pm and instructs that the Mid Line is removed and that a PICC Line be inserted in my left arm. I am also rushed down to scanning for a CT scan with a cannula in the back of my right hand
My lunch of Covent Garden soup with croutons is delicious. I then have my Ganciclovir later than usual – 2pm – into the back of my right hand and at 2.45pm Debbie from the I/Vteam comes to fit a PICC Line. There is the usual oodles of blood, but at least it is in and it was relatively painless. It took her just 25 minutes. At 4pm I am down in x-ray finding out where the lline has gone and was amazed to see it going horizontally across my upper chest and stop on the right side above my heart. It is just where the vein goes. Tina, Anna, Nick and Eva visit at 4.30pm with me bouncing Eva happily on my feet on the bed. After dinner I rest on the bed for an hour or so. My blood results for today:-
Wbc: 1.1; Hbn: 9.6; PLT: 112; Neut: 1.1; CRP: 26. My weight is 77.5kgs
Later I get a call from Anna with great news. They have settled on a price of 138,000E for the house they want in La Liquiere, in the Languedoc. I have both arms rather sore, the right one I clean up and apply E45. I persuade Suzanne to change what I now know to be derma film and to use smaller plasters which allow my skin to breath. It is obvious to me that I have some sort of allergic reaction to derma film. I am later given a red wristband to show this. I get Ganciclovir via my PICC Line, no problems. I am reading until 1.30am when I hit the hay.
Monday 19th March 2007
Another I-pod night’s sleep but intermittently. Wide awake at 6am with our transistor radio instead of Roni’s Christmas present as the batteries have gone down again. Not too much coughing during the night either and no night sweats. The cannula on my wrist was rather sensitive during the night. I decide as my aversion to water is at an end, I should drink more and make an effort for 2 litres per day. I manage that easily today but do not find it easy to keep up with. For my breakfast this morning I have a mug of tea. When did I last have an ordinary English tea? I am resting at 9.10am. My weight today is 75kgs and my temperature this morning is 36c. I have a hot chocolate at 11.10am Not sure if it was quite right. Visit from brother Peter just after 12midday. He and Suzanne were en route home from Sally’s in Hampshire.
Tim Corbett checked me out at 1.30pm. My cough/cold should clear up relatively soon, but the CMV will take longer. But I should be ok for the weekend after Easter for our weekend in Southwold, although I will still probably be immune compromised. The scheduled bone marrow sample and CT scan scheduled for Kings on Monday can be done here. Steve Devereux’s consultation will not be able to go ahead as I will still be here. I do not need to continue on Tazocin and will revert to Ciprofloxacin tablets. Rested for an hour this afternoon and at 4.30pm Guido had a go at breaking up the congealing film of blood at the end of my Mid Line, using a Urokinase solution. Initially painful, it got easier with further amounts of Urokinase in a drip. Tina and Anna visited between 4.30pm and 5.30pm. Guido finished with me at 6.40pm cleaned and wrapped the line and we will use it at 10am next morning with Ganciclovir. Tonight’s Ganciclovir will be delivered via the cannula, which will be removed after use. Todays blood results are:-
Wbc: 1.5; Hbn: 9.9; PLT:102; CRP 29. My temperature is 36.1c
I go to the Day Room to set myself up to watch the FA Cup replay, between Spurs and Chelsea. Matthew rings me at half-time and tells me the good news from the Golf Holiday Company. He will get a 13% pay rise, plus a share in the profits of the company for the current financial year, which Matthew knows has been pretty successful. This is really good news!! And the culmination of much thought on Matthew’s part as to how to really tackle Steve about it, without putting him in an embarrassing position, vis a vis Longmere. Matthew wants to try to do a course in Project Management – the Prince model – so I will ask Chris Pascoe for information on the course he did in 2005. I hope Matthew does do something like this course as it would certainly stand him in good stead for the future. There will, in all probability, be life after the Golf Holiday Company! Bed at 12.45am.
Sunday 18th March 2007
I am wide awake at 4.20am with a sweaty head, so I am reading yesterday’s newspaper. I had been concerned that one of the reactions to the Methylprednisolone would be chapped hands – but not so far. I am coughing a bit between 6am and 7am. I have blood samples taken at 6.45am by Ruta whilst being assessed by Phebbey. Didn’t she do well !! I am washed and breakfasted by 8.30am. My morning temperature check shows 36.6c. I have my morning Ganciclovir via the cannula, meanwhile I am warming up my shoulder and upper arm all morning for Guido to test and flush my mid-line so that we can try it on Tazocin. My blood results today are:- Wbc: 1.1; Hbn: 7.0; PLT: 76; Neut: 1.0; CRP: 40. I am seen briefly by Dr Duncan at midday.
Before lunch, Guido does some more work attempting to flush, etc. my line without success. He concludes from his past experience that it is probable that a film of blood has congealed around the end of the line, forming a fairly long sheath back down the outside of the line, but obviously inside the vein. When flushing, the discomfort starts firstly at the top end of the line probably by the sheath of blood expanding out and pressing on the inner wall of the vein. As he pushes more flush in the point of discomfort travels down the arm (and line) suggesting the sheath of blood expanding likewise against the inner wall of the vein going backwards. Then flush liquid appears coming out of the line hole at my elbow to prove the point. All this would explain the inability to draw back blood or get a flush into the line. He cleans up the blood and flush that is running everywhere and we await advice and the decision of a doctor about the use of a suitable anti-coagulant to break down the film of blood. I get my Tazocin drip at 12.45pm despite all this.
Because my haemoglobin level was so low yesterday – let alone today! – it had been decided to give me three units of blood today. This starts at 1.15pm, with me resting peacefully on my bed while the blood trickles in! My temperature at the start is 36.2c. The rate is two hours per unit. I have a break for my Tazocin to be given to me, while Anna visits with Eva and then I resume with the third unit. However, I am now getting a lot of discomfort to my upper arm which is not resolved with a slower flow rate and in fact gets even more painful. So we go for another vein on the top of my right wrist, which seems to be ok. We have one and a half hours left for this unit, timed to finish about 9pm.
In the meantime Guido tries flushing my mid-line once again, but it is no more successful than before - just seeping back down the line to the entry point. At 7.20pm Father Foley comes with Holy Communion, which is much appreciated by me. I then go straight on to the Ganciclovir combined with a saline drip for ease of delivery. This will run for another hour and a half, by which time I have been infused and transfused more or less continuously for 10 hours! The position of my cannula is quite awkward and sensitive as it is sitting on my wrist bone. I have it bandaged up to keep it tidy overnight. It has been a long and somewhat tiring day but I am awake reading etc., until 1.20am!
Saturday 17th March 2007
I am awake about 4.20am with my cough now on my chest and feeling really congested. I cough and splutter for two hours. Am I finding it easier to drink water? Yes I think so. I get my first lot of Tazocin at 7.20am. It is Ella’s 6th birthday! And I call her at 8am to wish her a happy day. She had her ears pierced yesterday and has sparkly ear-rings and pink sunglasses! Wonderful! My temperature at 10am is 36.9c. An attempt is made by nurse Suzanne take blood samples from the line. There is no suction, so the bloods have to be taken in the usual way. A further attempt is made to deliver Ganciclovir via the line, with a heat press to ease it on its way. It is so uncomfortable I cannot take this any more and we stop and go to the cannula. Meanwhile I get a saline nebulizer session to help free up the catarrh on my chest. Tina and Linda visit this morning with some purchases for me – pyjamas and a pair of track suit bottoms to keep me going these next rolling two weeks. While they are with me the weekend consultant colleague of Tim Corbett – Dr Duncan – sees me. We discuss the chesty cough and the mid-line. He directs that we hold on the line and use the cannula on my left arm. I get Tazocin at 1pm – no problem. My weight today is 74kgs. My blood results are:-
Wbc: 1.1; Hbn: 7.6; PLT: 69; Neut: 1.0.
It is the last day of Six Nations Rugby and I have free TV courtesy of the previous occupant of this room who left a Patientline card in the TV with, as it turns out, over 12 hours viewing left.
It is all very entertaining with France emerging as the Champions with a last minute try against Scotland to beat Ireland on points difference. Meanwhile Wales beat England convincingly at Cardiff to put into perspective last week’s beating of France by the England “youth” team. Tina, Linda and Anna arrive at 7pm from Ella’s party. We are expecting to take delivery of our new Citroen C4 on Monday – exciting! I spoke to Matthew later in the evening to update him on the events of the day. Ella had asked why I was not at her party and he told her that I was in hospital and not well. He seemed to get quite upset about it as we talked. My temperature at 10.35pm is 35.5c. I get my Ganciclovir and then the Tazocin via the cannula, while Ruta cleaned up the old blood around the Mid-Line entry point in the crook of my elbow. then slept for an hour on the bed and woke with a headache, so had some paracetomol. My cough seems to be a little better – hmmm! We shall see.
It is now a week since the end of my second week of Methylprednisolone. Looking back on the experience of my first five-day session, there are a number of differences – mostly to the good. Firstly I did not “hit the wall” at the end of the session as I did when leaving Kings - and I was taking Campath at the same time. Having said that, instead I was overtaken by the bad cold that brought me into here on the following Monday. Side effects seemed to come on the scene a bit earlier and not so vigorously. The dry mouth problem has hardly featured whereas it had been a real difficulty before, lasting quite a long time. The loss of taste for water came up again and surprisingly it is only two days less this time that I felt able to start drinking water in litre-type quantities. This was ten days after finishing the Methylprednisolone. My sleep patterns have been turned upside down both times and more or less for the same length of time. I am typing this retrospectively, but the first reasonable night’s sleep this time was the night of 26th March, two weeks and three days after the end of the Methylpred session, compared with only ten days of late-going-to-bed evenings. But I suppose the biggest difference has been in my ability – or otherwise – to eat and enjoy food. In February it took a whole week to find anything I could eat in the way of a substantial meal and a further 2 weeks before things started to taste good – or reasonably good. Having the knowledge of that difficult experience, this time we didn’t have to try all sorts of different food in vain hopes of finding a tasty meal. But more surprising is that I have been eating the hospital meals more or less from the start of my stay here.
Friday 16th March 2007
Awake at 5am – the steroid effect is still with me – and went to the kitchen to get a drink or something, only to find that the food thief had been at it again! Despite my threatening notice. This time it was a very nice sandwich, which Paul Wehrle had brought for me – pastrami and rocket – that had disappeared without trace. I don’t believe it! At 7am I am hooked up for Tazocin, 9am I am showered and at 10am Guido and Sr. Geraldine fit me with a smaller version of the PICC line – a mid line – in my right arm. There is lots of blood and lots more bleeding afterwards. However, Guido takes blood samples from the line and then starts me with Ganciclovir and all is working well. Tim Corbett on his rounds at 12.30pm calls by to check me over. We discuss the CMV and its effect on my stay here. At least two weeks is still the order of the day. I mistakenly connect CMV with the cough and cold that brought me into hospital. As Tim Corbett leaves me so in walks Bill Swallow and of course we start to chat. After a time – I don’t know how long – I get a message from the nurses’ station that Tina is on the phone enquiring after me and tears me off a strip for not answering her text messages and not letting her know how the line fitting went. I had in fact switched off my phone when Tim Corbett visited and forgot to switch it back on when Bill arrived. I apologise but we are not reconciled. Bill leaves about 2pm-ish to be followed shortly by Anna, Nick and Eva, fresh from la belle France last night. I have a late lunch of ham, sliced carrots and celery from the food I brought in while we talk about their two weeks’ of travel and house searching, but especially the house they are interested in buying in La Liquiere in the Languedoc. They show me photos of it and it certainly looks very appealing, albeit needing a lot of work doing to it.
About 4.45pm I get my head down for a rest and sleep, bearing in mind all this visiting and talking gets me coughing and spluttering and tires me out. Tina arrives at 8pm with Linda hotfoot from her drive down from Barlestone. Tina and I clash over the business of no morning contact in front of Linda – who makes a discreet exit - and one of the nurses. I won’t go into details but we are both uptight, both in the wrong. Tina is still stressed by the whole business of my being in here, the fitting of the line and the CMV, despite her speaking with Viki Bevan at Kings yesterday. As usual it is easier for me – I am the patient; I get the attention; the carer has to get on with it. It is so unfair and she doesn’t deserve to be so stressed. We make up and have a big hug-in. I have a late dinner of two bowls of Covent Garden pea and ham soup, followed by a chicken hotpot. Both are delicious. My weight today is 74kgs.
At 10pm Phebbey, on the night shift, gives me the Tazocin by bolus in the line. It is painful.
This followed by an attempt to give me the Ganciclovir through the line. It is also most uncomfortable, including tenderness on the outside as well as on the inside, to the extent that Phebbey stopped doing it and inserted a cannula instead. The remainder of the Ganciclovir is delivered by the old method. At 12.20am I am set for bed.
Thursday 15th March 2007
Up for a 7am Tazocin bolus – a syringe injection - and an 8.15am blood test. Breakfasted and then a 9.30am Ganciclovir infusion, after which I showered and then found Paul Wehrle on a visit. While Paul was with me Paul Hill did his round, so he disappeared for a while, then at 12.30ish Tina came for her lunchtime visit. Tina had been trying to make contact with Viki Bevan at Kings and was to speak with her in the afternoon – with good result – putting things into a better perspective for her and us. After all the activity of the morning I was knackered, what with all the coughing my cold was giving me, took paracetomol and I rested - and slept - the afternoon from 2.30pm until 5pm, interrupted slightly by the fitting of a cannula to my left hand. At 5pm Keith Arscott came for a visit - during which Fr. Foley also came to give me Holy Communion - and of course Tina came down after work. My blood results for today are:
Wbc: 1.4; Hbn: 8.6; PLT: 56: Neut: 1.4; Crp: 57; My weight tonight is 75kgs.
I felt a lot better this evening after the afternoon sleep and maybe the anti-biotics are having a beneficial effect. Anna is due back to Hurstpierpoint later this evening off the Newhaven ferry, from her journeys round the Languedoc and Brittany house viewing. That will be good for Tina as it must have been awful alone in the house, especially with that ridiculous news about the CMV. My cannula position hurts. They will be fast running out of veins for me; I feel a bit like a pincushion already. Sat up reading and doing Sudoku until 1.15am, then slept with my I-pod on.
Wednesday 14th March 2007
I am up four times in the night to the toilet and also had the head sweats. Just like a cold would do to me. But some good news is that my enforced rest with feet up on the bed seems to have considerably dispersed a lot of the oedema in my feet and legs, such that I have dispensed with the ridiculous tights. My temperature at 6.40am is 36.5c. It is a bright blue-sky morning outside, just right for a walk out, which is exactly what Guido has arranged, albeit on his official day off. He takes me to have my Pentamidine Nebuliser at the nearby Sussex House to give my lungs another month’s anti-biotic protection. He also uses it as training of two of his staff. Shortly afterwards Tina arrived for her lunchtime visit, while my lunchtime Tazocin is given to me by bolus injection rather that saline drip. It takes 5 minutes, rather than half an hour. It is no problem and gives the nurses a little more patient time – just. My 2.50pm temperature was 37.4c
I then had afternoon visits from Jim Rodgers and Eric Ross and telephone calls from Jerome – who is just back from Hong Kong with a job - and Martin Stevens. This is followed by a visit from Fr. David Foley, the parish priest for Kemptown who gave me the anointing of the sick, explaining that it was no longer the anointing of the dying – for which I was grateful! The results of my bloods tests this morning were:
Wbc: 1.7; Hbn: 9.7; PLT: 57; Neut: 1.7 and - a new one for me – Crp: 69 (this the measure of infection fighting level in the blood – as I understand it).
Tina came down about 6.30pm and sat with me until we were interrupted by “Dr. Tindall” – whom I now know to be Vicki Tindall a friend of (Dr.) Emma at Kings. She simply blurted out that they had received a blood result from Kings for Cytomegalovirus (CMV) with a reading of 53k when it ought to be 10. This was to treated by the anti-biotic Ganciclovir (380mg twice daily) for at least the next two weeks. At the time this seemed to be really big impact news, but Dr Tindall did not have the intuition to recognise this or the skills to deal with it if she had so recognised it! We were left like a couple of goldfish having been fished out of the pond, gasping for air, explanation and a friendly hand. Tina was particularly distressed by the news.
We spent the next hour or more trying to comfort each other, not really knowing what it all meant, especially in the current context of my having been admitted with this cold and cough.
When Tina left, we had resolved that she would contact Viki Bevan at Kings for a chat to get a better perspective on it. Additionally I resolved to find out if there was an oncology counsellor at RSCH who we could contact as well. All this was put behind me though when I went to the kitchen fridge to get a drink of fruit juice about 11.30pm to find that someone had been at my food, despite its being clearly labelled. A Covent Garden Soup (Lentil and Ham), a small bottle of mango and passion fruit juice and a tub of yoghurt, honey and ginger had been stolen and the cartons dumped in the kitchen waste bin. I was trailing around my drip at the time, spitting rivets and making quite a bit of “annoyed” noise, disturbed Adela and Phil, the night shift and was obliged to tell them about it. I checked all the labelling on my remaining food items and then wrote a note on a sheet of paper which said “Keep your thiefing hands off my food – Roland room 2” and stuck it in the fridge on my food. Needless to say, after that I had a sweaty night with head sweats and a temperature of 37.2c
I have decided not to slavishly record every meal whilst I am here. My breakfast is always based on food Tina brings in for me, like mango & passion fruit juice, Greek yoghurt, honey, Eat Natural cereal, mango, pineapple or banana, plus white or brown toast and marmalade from the ward kitchen. I later add a mug of tea to that as I get my taste buds back. The hospital lunches and dinners I invariably find are both nourishing and quite tasty, with a good selection and day-by-day variety. There is always soup, meals like chicken lentil casserole, beef and mushroom pie, lamb stew, etc. plus steam puddings, pie and custard, ice cream, or fruit for afters. All good stuff!
Tuesday 13th March 2007
I am about to have another and very different hospital experience; this time in the RSCH’s specialist HIV ward, previously known as the Elton John Unit because of the famous man’s earlier sponsorship of it over time. However it was not until later in the week that I realised that the ward was so specialised. As far as I knew it was just a ward in the hospital with a bed for me. It was more than a bed in fact, as each of the six beds in the ward had their own room. Consequently, and unlike the Kings experience, it was some time before I saw any of the other patients and in some cases, never saw them. My window looks out on to Eastern Road, Brighton from the east wing of the front of the original Victorian hospital building. Unfortunately, because of the buildings opposite (including The Sussex Eye Hospital – with apologies to Art Deco) I don’t have a sea view, just a seagull view!
I am awake and thinking at 7am and call Tina and Matthew to tell them where I am. At 7.40am I have my first of four daily doses of Tazocin and am told my temperature has now dropped to 36.2c. Then at 8am the Patientline rip-off TV starts up of its own volition with GMTV – one hour’s free TV to whet the appetites of the vulnerable! I meet my first nurses, including the ward manager - Guido Tapia – who I am to find out later has taken me under his wing. This man is just great and so experienced, having run this ward for 17 years and having been a nurse for the past 35 years since he came here from Ecuador. I spend the day lying on my bed, reading, making notes and - very importantly – resting, as I am coughing and spluttering all the time and using up a lot of energy doing it. I call Matthew, Anna (in Brittany), Daphne and Peter to let them know what is happening. At 12.30pm, I am seen by Dr Tim Corbett, who tells me I will be here until the weekend, when I should have had enough Tazocin to sort out my infection. My blood counts from last night are:-
Wbc: 1.5; Hbn: 10.1; PLT: 67; Neut: 1.3. My weight today is 76.5kgs – down 2.5kgs from Friday and that’s not good given the amount of fluid still in my legs. My temperatures in the afternoon were both high 37.6c and 37.7c. One feature of my admission here is that I am the only person who knows what my day-to-day medication should be, so I am left alone to take it myself from my weekly box I brought from home. All the remaining tablets I brought with me are locked away in the cabinet in my room, but together with the bottle of Itroconozole – not the Nystatin, nor the Corsodyl – just the Itroconozole!! So I have to ask if I can get it out twice a day – what is this all about!!
In the evening I discuss my food intake with Guido as I want him to understand the difficulty I have with my appetite and weight loss. He is very good. Tina is here until quite late, after which I do Sudoku, listen to my I-pod and turn in for bed at 11.40pm. We have labelled my packs, etc of food and drink and put them in the ward kitchen fridge.
Breakfast: Mango & passion fruit juice, Greek yoghurt, honey, banana, ginger;
Lunch: (Don’t remember)
Dinner: Mango and passion fruit juice, sweet and sour chicken and rice (surprisingly tasty)
Supper: Covent Garden Lentil and Bacon Soup – mine (superb)
Three Weeks in Howard 2 Ward RSCH
Monday 12th March 2007
We resolved yesterday that I would make phone calls today to get advice and direction on this cold and cough. But first I had a shaky walk up the village to get some ham for lunch and some avocado pears. I stopped to speak to Cath in the High St. and tell her my latest, which obviously didn’t sound very good to her as she got quite upset. I think I must also have looked very shaky but told her I was going to make the contacts to sort things out. This business of frequency of the need to urinate kicked in at the Deli., after buying the ham. But the assistant would not let me use their toilet - “Health and Safety”. “Stuff you,” said I, “If I pee myself before I get home”. Anyway I rescued my plight at Gibsons, thanks to Linda. Really annoying and the last time I go into the deli, unless I go back later and tell them I am now relieved! Now I know how Victor Meldrew feels about life! On my return I list my symptoms –
Temp 36.8c, nose catarrh and phlegm, bit of a headache, feet and legs like an elephant’s with oedema, urinating every 15 minutes or so and feeling very weary. After several abortive attempts I get through to the chemo-therapy room, haematology outpatients and speak to Charge Nurse Teea and then (Dr) Austin. He advised me to take two paracetomol, co-trimoxazole (septrin) 960mgs, try to get a blood test done today (and Friday) and if I could manage it, to get to see Dr. Paul Hill for an examination.
Thanks to Mo McGhee, Paul Hill can see me at 3pm this afternoon in his ward at PRH. Tina gets home and drives me up to hospital for 3pm. “I have only 5 minutes,” he tells us frantically when he appears at 3.30pm. “What are your symptoms?” he demands with urgency, as he checks me over. I rattle them off as I had done with Austin in the morning. “You feel warm”, he observes as he feels my chest, “Let me check your temperature”. “It is 37.7c.” he remarks, scribbling frantically on one of the medical note sheets he always uses. “I am going to admit you, give me a little time to sort out something”. Bang goes his “I have only 5 minutes”. Tina joins me from the ward day room to await developments. What is going to happen? How will the day end? Where will I / we end up? About 30 minutes later Paul returns to tell us he has a bed for me in the Medical and Surgical Assessment Unit at Royal Sussex County Hospital (RSCH) Brighton and we should get there as soon as possible with a bag for 2 or 3 nights.
We are at the RSCH about 5.30pm, but first we have to go through the procedure of registering into the hospital through their A & E admissions and Triage Nurse system, which is “down” and therefore being paper driven this evening. Fortunately, Tina remembers the “To Whom It May Concern” letter, which Viki Bevan gave us in the event of such a need to get priority treatment. I am not thinking very straight at this time and it is good that she is. It is my passport to immediate attention. I contact Matthew while we are waiting in a bay in A & E to let him know what is happening. It is 6pm when I am admitted and indeed it is to a bed in the Medical and Surgical Assessment Unit (MASU), as already arranged by Paul Hill. I am there for a seeming eternity. I have blood samples taken at 7pm, which later show:
Wbc: 1.20; Hbn: 9.8; Plt: 83; Neut: 1.20.
I am seen by a very handsome Dr (Victor), who makes immaculate notes about my background and condition - but that is just one stage. We have brought a coolbag full of food bearing in mind the difficulties I have been having with my eating. I am able to have a dish of pork casserole micro-waved. I then think we agree that Tina should go home about 9pm as it looks as if it will be a long night before my assessment is completed and they are able to find me a bed on a ward – if they are actually able to do that! I am made aware that I am on 15-minute observations for blood pressure and temperature while I am being assessed. This is from an efficient Charge Nurse (Morgan). I recall going for an x-ray and possibly other checks – it is a little vague now. That takes me away for about an hour from the Unit and the 15-minute observations slip. I ask an auxiliary nurse to check on this, but pick on the wrong one. He is not in the right job, doesn’t want to be there and certainly doesn’t want to be fussed with doing my observations. Both his temperature checks are dubious – not right into the ear. “Normal” he tells me. I am unhappy with this for several reasons, one of which relates my doubting their accuracy. Fortunately I have another check by the night duty doctor (Dr) James at 12.55am, which reveals that my temperature is in fact 38.1c. Fever pitch!! What a good call by Paul Hill this afternoon to get me in. How would I have known that I had such a temperature if I was at home in bed? I am prescribed intra-venous anti-biotic called Tazocin after referral to Dr Tim Corbett. By 2.30am my temperature is down to 37.8c. At 3am I am transferred to Howard 2 ward, escorted by Morgan, with my bags of clothes and the cool bag of food.
With my rather sudden hospitalisation, typing my log is the last thing on my mind but eventually I get back to it. I am in fact only now resuming typing this log 9 days later, on 21st March! – so I have a lot of catching up to do while lying on my hospital bed.
Breakfast: Mango and passion fruit juice (not quite right); yoghurt, Eat Natural cereal, cut pineapple, honey; water.
Lunch: Ham salad with carrots and celery;
Dinner: Spanish Pork Casserole in hospital microwave in MASU (good)
Saturday 31st March 2007
I am awake at 5.40am – intricate ablusions again as was the case twice during the night! I am up and doing by 6.30am and checking my weight – 77kgs. I am on a Tazocin drip at 6.55am. through the cannula. Julie had tried a bolus but it hurt like mad so we changed it for a drip, which was a lot better. Then followed Ganciclovir while I had breakfast and then at 9.35am I was given the Foscarnet. This is very painful through the vein in the back of my hand and I need Paracetomol to reduce the discomfort. I have a 2 hour break from the pain of drugs through the cannula until 12.30pm when I have my next dose of Tazocin for half an hour. Meanwhile Tina has arrived. At 1.10pm I have my first observations of the day – which are BP: 143.75 and temperature 36.8. I am immediately told that I am moving to Howard 1 downstairs where I share a side bay with a chap called Colin Hillman from Willow Way, Hurst. What a small world! I am immediately seen by Tim Corbett. My CMV count is 5652 as of a sample examined at Kings on 29th March – I assume taken on Monday 26th March. This is considered to be good progress and every reason to continue with the combination of Ganciclovir and Foscarnet as prescribed. The chest infection has now moved into my bronchial tubes and the anti-biotics will continue on that problem as well.
I am on the ground floor with a window side bed facing south as before in Howard 2 and straight out on to the front car park. I am made very welcome by staff nurse Ali and charge nurse Leigh, who gets to work on my PICC line. The good news is that the line has cleared, no doubt due to the best efforts of Phil upstairs last evening, but with the Urokinaze having a delayed effect, so I am able to have my Foscarnet via the line and the cannula removed from its painful position on the back of my hand. My observations this evening, taken at 7.15pm and 9.25pm were BP 138/68 and 127/67, temperature 37 and 36.3c. respectively. I spend the evening getting back into “With Their Backs to the World” by Asne Seierstad – fascinating.
Friday 30th March 2007
Up and doing at 7am and observations taken at 7.20am:- BP 150/71, temperature 35.9c and weight 76.5kgs. Start ed a unit of blood at 7.30am for two hours. At 9.50am Phil has a problem flushing my PICC line ahead of my morning Ganciclovir to the extent that it is necessary to fit a cannula – rather painfully to my right wrist. I have visits from Sarah, Terry and Lesley and then Tim Corbett. The CT scan result looks good with less problem visible than is obvious from examining my chest himself. He puts me back on Tazocin and off Ciprofloxacin to treat my chest. Also I am prescribed Foscarnet twice daily to complement the Ganciclovir whose dosage is reduced by half. He advises that we keep to the results from Kings as the definitive position rather than their own laboratory. This ensures consistency of results as they are inevitably a lot more accurate. He aso wants me to swap back to Itroconozole in liquid suspension rather than the capsules.
Belatedly I get the Ganciclovir which was due at 10am followed by the Tazocin both via the cannula. Meanwhile Phil tries to clear the PICC line with a Urikinaze drip for nearly two hours but is unsuccessful and is still unable to flush it but cannot understand why not. I get my blood results from samples taken earlier today. These are:-
Wbc: 1.3; Hbn: 10.1; PLT: 122; Neut: 1.0. Not good and I will need GCSF this evening.
My 4.45pm observations are BP 131.71; temperature 36.6. I have a third unit of blood this afternoon which again is transfused via the cannula. But this is very painful despite the three hour rate we let it run at. Flushing afterwards is very painful. This has been a most frustrating day with much of the time lost attempting to get infusions into me that don’t want to go in and every effort being made to clear the PICC line so that we get the best use out of it.
Add to that some of my new medications have not come to the ward from the pharmacy and we are collectively fed up. I catch up on my weblog from 7pm after Tina has gone home for the evening. My observations at 9.45pm show BP:146/70 and temperature 36.7c. Meanwhile I have a cannula inserted by a doctor, rather painfully in the back of my right hand. I was given my Tazocin via a bolus, surprisingly easily, followed by the new anti-biotic – Foscarnet – to complement the Ganciclovir and tackle the CMV. I was asleep on the bed from about midnight to 1.30am and then properly to bed, after some intricate ablusions advised as necessary in conjunction with the Foscarnet!
Thursday 29th March 2007
I am awake at 5am and catnap through to 6.30am My 8.30am observations show: BP 149/67 and temperature 36.3. My weight is 76kgs again – consistent if nothing else as I am checking it at 7am every morning before having a shower. Guido sees me to tell me that he personally labelled and marked Monday’s CMV blood sample for dispatch to Kings, so he cannot understand why it was thought it never went. He checks further and verifies that it did go. So what all the fuss was about yesterday, I don’t know!! Just very annoying to not know whether things are going right or not. Meanwhile Tina has been in contact with Viki Bevan at Kings about the blood and about what is happening to me here. Her checks show that the blodd sample has not arrived! She will speak with Steve Devereux about my case as it is possible he might want me transferred up there. 10.45am and Sister Peter brings me Holy Communion and an hour later I have my consultant’s visit from Dr Duncan. “Just keep going with the current treatment” is his opinion.
I then have visits from Colin Dunbar and Vincent Meagher, plus magazines to keep me from being bored. As if I could be! I doze off after lunch until 3pm when I go for the high resolution CT scan of my chest. I cough heartily with every deep breath I take – and I have to do at least a dozen. Still it shows that the problem is clearly not going away yet. My 1.30pm observations are BP: 126/59 (that’s low!) temperature 36.5c. I get a text from Cath and Jim to say they found La Favorita beret shop in the Plaza Mayor in Madrid and have bought me a beret, size 57! Great! Tina is with me when we are told by Dr Vicky Tindall that Tim Corbet and Steve Devereux have conferred today and decided that Ganciclovir should be supplemented by another anti-biotic called Foscarnet in order to drive down the CMV count more effectively and the dosage for the Ganciclovir will be reduced by half to make way for the other. RSCH has been independently testing my CMV samples separate from sending off samples to Kings. Their latest count is 1250 – I am not told what day the sample is and we don’t know how that compares with the sample for Kings taken on the same day. Later I have my Teicoplanin by bolus and Jo starts me with a unit of blood. I will have the second tomorrow. My evening observations are: BP: 137/63; temperature 36.7.
My blood results for today are:- Wbc: 3.0; Hbn: 8.3; PLT: 122; neut: 2.7; CRP: 9.0.
Wednesday 28th March 2007
Awake at 6am for the start of the Today programme and showered at 7am. I am still coughing for England! My morning observations are BP: 145/67 temperature 37c. My weight is 76kgs. Following a referral by Richard Cook, I have an appointment with the urology consultant Mr Nawrocki at PRH on 16th April about all the urinary infection problems I had back in September and October last year. I had already put off a February appointment as I was on one of my day visits to Kings. I had mentioned the problem to Steve Devereux to which he had commented that you can get CLL in the bladder. Coincidentally or otherwise my urinary problems had occurred at the same time as my CLL was obviously returning, but since then there has been no recurrence. Mr Nawrocki’s secretary advised that she would mention this to him on Monday on his resumption from holiday, so he could consider the best way forward, given my present position and Steve Devereux’s comment. He works from this hospital as well and might visit me.
I have a visit from Michel in the morning and Tina arrives about midday in time for Sarah Hartley’s round. My chest is still causing some concern. They want to be sure that the infection is bacterial and not fungal. She expected I might have had the high resolution CT scan requested yesterday – but no. My haemoglobin level is such that I will need transfusing, probably with two units and probably tomorrow. I later find out that the CMV blood sample taken on Monday from me was not sent to Kings, so I have to have another taken. I had been told that two CMV blood samples per week should be taken from me; on Mondays and Thursdays. This is the second week that the Monday sample has not gone to Kings. Once is an unfortunate mistake; but twice smacks of muddle and incompetence. It is my opportunity for discharge by getting two negative samples in a week that is being jeopardised and this is extremely frustrating and annoying. My observations at 2.20pm show BP: 155/75 and temperature 36.4c. Tina is having lunch with Wendy Arscott in town, but will be back later in the afternoon. Meanwhile I am sitting in my chair by the window typing but getting very annoyed about the smell of cigarette smoke drifting up and through my partially open window from the builder working in the room immediately below mine and who has his window wide open. I know that as I went down to check it out! Apparently the hospital “no smoking” policy does not apply to the builders working on refurbishment of Howard 1 ward below. I feel a Victor Meldrew moment coming on, but must suppress it to keep my blood pressure down!
I spent some time scanning through Chris Pascoe’s book on Prince2 project management ready for Matthew coming in this evening. I made a few notes of points which I thought might be of relevance to him. I will leave it up to Matthew to decide if he wants to take the book with him and he does. Tina comes back from her lunch having sat and chatted with Wendy from 1.30pm to 4.30pm. Before she leaves to go home I get my blood results, which are good:-
Wbc: 2.8; Hbn: 8.1; PLT: 140; Neut: 2.6; CRP: 13. My haemoglobin level is down further from yesterday, so transfusion is a definite. I also text out an update message mentioning my chest infection and the expectation of being here until after Easter. I get several responses including one from Tim Godwin. Matthew and Charrise bring Ella, Lily and Mia to visit me and we have a somewhat chaotic hour. The girls go out for a short while and Jo is able to give me the Teicoplanin in a bolus, which takes no time at all, rather than a half hour drip. My evening observations are:- BP 142/68 and temperature 36.2c. Having brought my web log up to date I am now in a position to start reading my Asne Seierstad book about Serbia. It has taken two weeks to get here this point!
Tuesday 27th March 2007
I slept an hour and a half on the bed whilst initially listening to the midnight news! Once in bed proper I then slept until waking at 6.40am – with just one night time interruption. No need for my I-pod to get me to sleep and quite the most comfortable night’s sleep I have had since being here. That took long enough for the effects of the Methylpred to wear off! I am showered by 7.30am, my morning weight is 76kgs and my 9am observations are: BP 143/63 and temperature 37.1. I get a phone call from Richard Cutler from his lorry somewhere on the road back to Shorne from Ashford. He has been up since 4am! He is talking about Jane and him coming down for a visit, perhaps next Wednesday. I also receive a parcel from Jeanette containing a selection of bite size bars – a lovely thought. In fact I am eating a Crunchie bar as I type! I have also determined to get back on track with drinking two litres of water per day – which I did. This had slipped since last Friday because I was finding water rather unpleasant to taste, whereas today things seem to be much better. Despite this I bought two small bottles of Lucozade from the hospital shop, hopefully to give me some variety.
Tim Corbett comes to see me at 12.15pm with the news that the CMV count in my blood sample taken on Thursday 22nd is 30346, 23000 down from the initial count from a sample taken during the week commencing 5th March. This is the first indication of the level of progress I have made with the Ganciclovir. This result is after 7 days treatment with Ganciclovir and two weeks after the original blood test. Nonetheless this is not good news at all, because he is still talking about my being here for another two weeks. At the same time he isn’t overly happy that the chest infection is clearing up yet and wants me to have a high resolution CT scan of my chest to see if all is ok. At this stage I can see me being here right through Easter and it looks as if our Southwold weekend is in serious jeopardy. For the first time since being admitted into hospital I am really fed up and particularly so in anticipation of how Tina will be about it. As if prompted by this bad news, my blood pressure goes up in my lunchtime observation – BP 161/72 temperature 36.3c. I spend the afternoon on the laptop until Tina arrives. I fully expect her to be upset and frustrated by the news, but amazingly she takes it very well. I guess she may have already expected it, whereas I was optimistically thinking I would be out at Easter and we would make it to Southwold. We decide we should cancel the weekend, although it transpires they only need 48 hours notice and we have paid no deposit. So we still some options. My evening observations show BP back to 145/72 temperature 35.8c. My blood results today are good news, however, with a rise in my white cell counts as follows:-
Wbc: 1.5; Hbn: 8.5; PLT: 122; and Neut: 1.3. No doubt thanks to GCSF. I spend the evening typing and have finally brought my web log right up to date!!
I have now been in Howard 2 ward for two weeks. I came in with a bad cold and temperature and was told I would be here for the rest of the week while they sort me out with anti-biotics. Then came the news of CMV on the Wednesday and from that point I am on what has turned out to be a rolling two weeks of treatment for it, which is now going to go past Easter. Overall I glad I am on this ward rather than up in haematology, if only for the reason that I get a good signal on my mobile phone! The staff are good and Guido is a gem. The catering and cleaning staff are a delight, almost all of them from the four corners including Lithuania and Brazil. I have a good view out of my window, can watch the world go by if it suits and get sun when it is out. Having my own room I have privacy when I need it and with my keeping late hours in the first week and a bit, I do not disturb anyone else. I can rest or sleep when I want to, read my paper from cover to cover if it takes me, or get on with typing my weblog, albeit I will not get it on to the web for another two weeks at least. I have a very good signal with my mobile phone and am in constant contact with family and friends. I have Holy Communion brought to me on Sundays and Father Foley might pop in from time to time. I have good interactions with the nursing teams, particularly as my room is situated right opposite their station. So I can be as nosey as I want to be. I don’t have much interaction with other patients, some of whom are rather poorly and some I never or hardly ever see. This is a very different experience to what I had at Kings and considering I must be here for another two weeks or so, I am glad I have my own room. I might have run out of energy had I been in a ward with other people for more than a week – and I am looking at four! Today was the first time I can say I was fed up, getting news of the CMV test. It was not so much for myself but in expectation of Tina being disappointed.
Monday 26th March 2007
I had quite a good night’s sleep for a change - no need for the soothing sounds from my
I-pod. Nebulizer , observations, breakfast, Teicoplanin, Ganciclovir and blood samples followed on each other so that I hardly moved out of my bed until gone 11am! Guido had difficulty taking my blood, despite the two consecutive infusions going in without problem - would you believe it! The cannula on the back of my right hand was then removed, making it easier for me to shower, but leaving a tender bruise. Outside there is clear blue sky and it could be a warm day in here as well, as I will get direct sun on my window in the afternoon. I have a black tongue, which was noticed by Vicky Tindall yesterday. I wonder if it is fungal and then forget to tell Tim Corbett about it. My blood test this morning shows that I am even more immune compromised with readings of:-
Wbc: 0.4; Hbn: 8.2; PLT: 113; and Neut: 0.2. On the other hand my early morning check has BP at 154/62 and my temperature 35.9. I don’t know why but I have no further observations today until I ask for them at 10pm. They show my BP as 140/60 and temperature as 36.8. My weight tonight is 77kgs on the same scales as I always use. This compares with 75kgs yesterday morning. What is that all about?
I had a visit just before lunch from Mia Morris, who is an eye consultant working just across the road. That was nice. I also get a visit from Tim Corbett about the same time at which my blood results (as above) are given to me. He attributes the low white cell results to the Ganciclovir. Obviously this means that I am even more immune compromised and he prescribes GCSF to help bring the counts back up again. My chest is still rattling and he thinks I ought to have a focussed CT scan of the chest to check it out. I have a dozy afternoon - perhaps lack of recent sleep catching up on me? – until Tina arrives. Tina is unhappy because she wants me to be home and not here. She doesn’t like it on her own and can’t wait for me to be discharged. It is so unfair for her. I get all the attention and am laid back about the whole thing, whereas she is really the one suffering.
I have a GCSF injection followed by my evening Guinness and dinner. We are still having problems with the PICC line as Sally and Guido try to start me with the Teicoplanin. It is eventually realised that the nozzle on the arm end of the PICC line is the problem and Guido fits another one and off we go. It was broken inside and stopping the flow through it. Perhaps that has been the trouble all along. I call Matthew this evening for a chat as I hadn’t heard from him today. He is frustrated and fed up on my behalf and, typically, reacting just like Tina – they are so alike in temperament, etc. We resolve that he will visit Wednesday early evening with the girls, which will be great. My evening ends with a little typing after the Ganciclovir finishes at 11.30pm.
Sunday 25th March 2007
With the clocks going forward an hour, my “body clock” told me to have another hour of sleep – or at least rest - this despite my sleep pattern still being out of kilter. So my morning call to Tina was at 8am. I decided to check my weight before breakfast – 75kgs. I had just started my breakfast – about 8.45am – when Sister Peter arrived to give me Holy Communion – which was nice. I am feeling a bit of discomfort in the upper arm / shoulder area of my PICC arm and mentioned it to nurse Jo. Am I getting some form of allergic reaction? Blood pressure check at 9.40am gave me 161/65, with my temperature at 36.1c. I then take a walk down to the original part of the hospital to photograph the fascinating plaques and boards on this a quiet Sunday morning. This is followed by my morning Ganciclovir, with no flushing-type problem unlike last night. I then have a late shower and hey presto it is lunchtime already. How time flies when you are enjoying yourself !!! Pleased to say that I am feeling quite a bit better today and feel that the improvement is more marked than other day-to-day comparisons. I am putting that down to the ventalin nebulizer clearing my airways and breaking up all the nasty mucus in my lungs , making it much easier to shift. I am glad I am in here with the CMV because, having finished with the anti-biotics there would have been pressure to get me home, where I would not be resting as much as I am doing here, would be tempted to go out with likely temperature changes affecting my lungs and where I would not have the regular monitoring, chest examinations, etc., prompting more anti-biotics and the nebulizer. In fact my cold would just drag on and on for weeks.
Vicky Tindall comes to see me at 3.20pm. She finds I am still rattling down the bottom of my lungs. We discuss the PICC line and the amount of tenderness in my arm and around the point of entry, where in fact there is reddening of the skin, suggesting a possibility that some infection may be starting or have started. She prescribes me another intra-venous anti-biotic
(Teicoplanin) to deal with this and requests the nurses take a dry swab of the area to see if there are any gremlins on the surface of the skin. Tina visits after having had lunch with the Worthing Mockfords and having had red wine accidentally poured all over her by Ella - including in her ear! We notice that my line forearm is quite swollen and puffy. I point this out to nurse Jo, but a later examination reveals that it is the bandaging up of my arm to protect the end of the PICC, which I did too tightly – Doh !!
I get yet another cannula fitted – this time to the back of my right hand – because they cannot get my Teicoplanin into me via the PICC line. Nurse Julie puts some Hepsal anti-coagulant into the PICC line and lets it stay there doing its stuff for well over an hour. I works and I then get my Ganciclovir via the PICC line. My blood pressure this evening is 141/58 – good! However my temperature is 37.5c the highest I have had since first coming in here two weeks ago. I celebrate a weird day with a Guinness(!) and am in bed at midnight.
Saturday 24th March 2007
Slept fitfully as usual buoyed along by my I-pod, but no coughing during the night. Awake early again but lay-in between 6 and 7until the “Today” programme kicked in. My line arm feels a little easier this morning – or am just getting used to it? Not sure. 7.15am and Euni is in with my medication and the ventalin nebulizer. I am shaved and showered before my 8am breakfast and am ringing Tina to see if she is in better spirits this morning. Pleased to hear that she is, with a determination to go out for a brisk walk, before setting to with housework and shopping. Matthew has asked her to lunch tomorrow, which is great. At 8.20am this morning I am 77kgs, my BP is 148/65 and temperature 36c. I take a walk down to the hospital shop to buy my paper, which is full of background to the Bob Woolmer murder; match fixing mafiosi in India and Pakistan, not to forget the South African Hansie Cronje connection (he was killed in plane crash – don’t forget!). There are also comprehensive reports of the London 21st July 2005 abortive bombing trial and allegations of direct connections between the leader of that group, Al-Quaida and two of the suicide bombers of the 7th July. This has come about because one of the group has broken ranks on the group’s concocted defence storyline. The other main story is about the capture of 15 sailors and marines by Iranian Revolutionary Guards in the Shatt-al-Arab Waterway between Iraq and Iran, for supposedly trespassing into Iranian waters whilst intercepting a dow apparently smuggling vehicles into Iraq. Sounds like a set-up job to me in order to deliberately instigate an international incident – which it certainly has; agent provocateur or what!
Anyway enough of interesting current affairs. Daphne rang to check on my state of health this morning. She also reminded me that they would be over to Paul and Begona’s in Den Haag from Thursday through to Tuesday. 10.15am and I am on my morning Ganciclovir with Jo i/c.
Spent the morning reading the paper from cover to cover – as above! Paul Hill called by at 12.10pm to check me over. He found a small lymph gland in my right armpit, but of no great consequence. My chest is still a bit congested in the bottom left area, but I am on all the right stuff and he is overall happy about my situation albeit it will drag on for a while yet. My after lunch observations at 2.20pm show BP as 150/77 and temperature 36.8c. Tina then rang to tell me she was in Lewes with Sue Pitt, having been shopping and having some lunch there too – what a good friend Sue is! She will have to go home first and then down to see me and arrives freezing cold mid afternoon but is warmed up by the time she leaves at 5.30pm! My 9pm observations show BP as 143/69 and temperature 36.7, so things seem to be stabilising after a couple of days of higher BP. I have a theory on that which is that the higher BP coincided with the trouble we were having with the mid line. Whether I was getting worked up about it I don’t think. I was certainly getting annoyed. So that’s my theory anyway. Meanwhile we were having difficulty getting movement in the PICC line this time and Hepsal was used to help clear what might have been a small blood clotting at the end of the line. It worked and I had my Ganciclovir through the PICC. I have been trying to drink more water, like two litres per day. I am finding this rather difficult because I am not enjoying the taste of water much. Perhaps I should try sampling some of the drinks they have in the shop, like lucozade and similar.
Friday 23rd March 2007
Another fitful night’s sleep with I-pod in ears and awake at 6am and ringing Tina at 7am. Showered at 7.30am As I am now neutropenic, I have to pass on my cereal mix, but otherwise my breakfast is no different, except that I shall have two pieces of brown toast from now on and I do have Tina’s homemade marmalade to go with it, Ymmmmm. My line arm was causing me some discomfort during the night as I could not find a good position. It feels as if my tendons on the inside of my arm are unhappy being stretched and my bicep also feels tender. I mention this to Guido; he wonders if I have a slight allergy to the material of the PICC line – I hope not that would be too awful to contemplate – but we will keep an eye on things and see how or if they develop. I am happy with that, but unhappy with the level of discomfort, albeit there are no problems whatsoever with its operation as intended for blood sampling and infusions.
I go for walk down to the hospital shop to give my legs some much needed exercise, as I am a bit wobbly on them. I take a look up on the first floor of what is the original hospital building, finding some fascinating and historical signs and plaques. I resolve that I must photograph them and will ask Tina to bring my camera bag down tomorrow. Sunday would be a good, quiet morning to take some photos. There is a grand board making reference to King William1V and Queen Adelaide “condescending to visit this hospital on the 4th of November 1833 and, after minutely inspecting every department, were graciously pleased to express their entire approbation of the manner in which it was conducted.” I ask you – how quaint. There is also a commemorative plaque on which is recorded a donation from a Mrs Ralli in 1904 of over £26,000 in memory of her late husband. The amazing thing about this is that his name is carved in full, whereas she is plain “Mrs Ralli”, with no first name – an unfortunate sign of the times no doubt. On arrival back on the ward, at 9.20am Guido has been looking for me to do my morning observations, but having walked up stairs to see these inscriptions etc. and then back up the stairs to Howard 2, my blood pressure (BP) is high at 171/66. In fact my legs were very wobbly and my hips ached from just walking up the staircases. My temperature is ok at 36.3c, my weight 77.5kgs.
The big news today is that the Jamaican Police believe that Bob Woolmer was strangled to death in his hotel room the night after Pakistan were hustled out of the World Cup by Ireland on Saturday – or did they throw the match? During a phone chat with Stephen Pitt, mention was made of beer, including Guinness, just as Guido came in “Guido, any reason why I couldn’t have a daily Guinness, strictly for medicinal purposes?” “I don’t see why not. It will probably do you good, won’t it.” So the green light for some daily pleasure, especially now I have my taste buds back. 11.45am and Tim Corbett visits with Vicki Tindall, Sarah Hartley and Sarah Worcester, introducing herself as the Haemotology Nurse Specialist. I am both neutropenic and lymphopenic. Tim Corbett checks me over and finds that I am wheezing considerably and my chest is rattling down below. He decides to prescribe me ventalin nebulizer four times daily and an anti-biotic called Clarithromycin 550mg twice daily, which both start at 1.15pm My 2.30pm observations show my BP as 155/70 temperature 37.2c
I spend the afternoon relaxing and reading until Tina arrives at 4.50pm. My 5pm observations were BP 146/67 temperature 36.5c. My morning blood results are:-
Wbc: 0.9; Hbn: 8.9; PLT: 120; Neut: 0.9; CRP: 17. So a little improvement on yesterday’s data. At 7.45pm I get a quick visit from Fr. Foley with a blessing. I then have my first Guinness. My fourth set of observations at 8.20pm are BP 152/64 and temperature 37.3c. I am then blogging until quite late, whilst I get my Ganciclovir about 9.45pm. I am in bed at 1am.
Thursday 22nd March 2007
Awake at 1.30am with earache and I have paracetomol to deal with it. I had a longer sleep, waking at 6.30am with a bit of a head and ask for more paracetomol. I make my morning call to Tina and wish Anna bon voyage to Mull via Peter at Streetley tonight. I am shaved and showered by 8am. My Ganciclovir is started off at 9.10am and I have a visit from Paul Hill at 11.10am. He says things are going well overall for me, but they had lost last week’s CMV blood sample intended for Kings, which means that today’s blood sample is the first CMV check that Kings will be able to report back on. Whether this will delay my escape from here I don’t know. Easter looks a forlorn hope, so I make it clear that the weekend after Easter is an absolute must to not be here as we have our Southwold weekend. We will probably be ok for that but I may still be immune compromised. Paul reckons I will go straight on to Campath immediately upon my discharge, whenever that might be, with regular weekly CMV and blood checks at PRH to ensure I am not neutropenic. He is not too bothered about my blood pressure as it is only over two days. “Is it a known side effect of Ganciclovir?” he asks of Vicky Tindall. No reply. I still have plenty of Oedema in my legs and ankles.
I am visited by Erik Shopland between 11.30 and 1.30pm. and we have good chats. My lunch is a Covent Garden red bean and lentil soup (delicious). I am typing my log from 3pm to 4.40pm, when Tina arrives. My BP check shows 151/65 and temperature 36.6c and my 9.20pm check is 149/69. My blood results for today are:-
Wbc: 0.8; Hbn: 9.2; PLT: 107; Neut: 0.8; CRP 20. I am in bed at 12.30am.
Wednesday 21st March 2007
At 3.30am I am awake with a headache and am given paracetomol. I am then awake at 6am having had a head sweaty night with my I-pod on all night again. It is Budget Day and Gordon Brown’s 11th Budget. Following yesterday’s line changes, my right arm is fine. My left arm is better for the change from derma film plaster – to which I now know I am allergic – to a Tegaderm breathable plaster. But I have a sore area on the edge of the crook of my left arm. I am showered at 7am, breakfasted at 8am and I trim my beard at 8.45am. At 9am I am typing on the laptop and am receiving Ganciclovir at 9.50pm. I am seen by (Dr) Sarah Hartley about two days of higher blood pressure, then I have a visit from Chris Pascoe up to lunch time. Tina has been to see Ashley Adsett the Oncology Counsellor for a chat. My BP at 2pm is 142/66. I spend the rest of the afternoon to 5.30pm resting on the bed until Tina and Anna arrive with Eva. Anna is off in the morning to Mull, so we say fond farewells.
At 7pm Jackson is here to check my BP. He tells me to relax my arm, but I did not realise it was tense. My BP is 157/67 my temperature 36.4c and I check my weight at 78kgs. It then occurs to me that my higher BP could be attributed to annoyance or anxiety about the ill fitting Mid Line in my right arm, now removed. Well it ‘s a thought anyway.
Tuesday 20th March 2007
I am awake and reading at 5.45am. No sweats last night, but on/off sleeping with my I-pod going. No coughing first thing. I call Tina at 7am and am showered by 8.15am followed by breakfast. I am delighted to find out that my Itroconozole liquid has been replaced by capsules. I am also back on the anti-biotic Ciprofloxacin, rather than intra-venous Tazocin. At 10.15am ahead of my Ganciclovir, we attempt to draw and flush my Mid Line, but it is no go and a call is put in for the I/V team to come and see me. Matthew and Charrise visit as Charrise had an appointment with her hearing consultant. Urokinase is tried again, but it is very painful and I have to have some paracetomol to ease the discomfort. Tim Corbett sees me at 12.30pm and instructs that the Mid Line is removed and that a PICC Line be inserted in my left arm. I am also rushed down to scanning for a CT scan with a cannula in the back of my right hand
My lunch of Covent Garden soup with croutons is delicious. I then have my Ganciclovir later than usual – 2pm – into the back of my right hand and at 2.45pm Debbie from the I/Vteam comes to fit a PICC Line. There is the usual oodles of blood, but at least it is in and it was relatively painless. It took her just 25 minutes. At 4pm I am down in x-ray finding out where the lline has gone and was amazed to see it going horizontally across my upper chest and stop on the right side above my heart. It is just where the vein goes. Tina, Anna, Nick and Eva visit at 4.30pm with me bouncing Eva happily on my feet on the bed. After dinner I rest on the bed for an hour or so. My blood results for today:-
Wbc: 1.1; Hbn: 9.6; PLT: 112; Neut: 1.1; CRP: 26. My weight is 77.5kgs
Later I get a call from Anna with great news. They have settled on a price of 138,000E for the house they want in La Liquiere, in the Languedoc. I have both arms rather sore, the right one I clean up and apply E45. I persuade Suzanne to change what I now know to be derma film and to use smaller plasters which allow my skin to breath. It is obvious to me that I have some sort of allergic reaction to derma film. I am later given a red wristband to show this. I get Ganciclovir via my PICC Line, no problems. I am reading until 1.30am when I hit the hay.
Monday 19th March 2007
Another I-pod night’s sleep but intermittently. Wide awake at 6am with our transistor radio instead of Roni’s Christmas present as the batteries have gone down again. Not too much coughing during the night either and no night sweats. The cannula on my wrist was rather sensitive during the night. I decide as my aversion to water is at an end, I should drink more and make an effort for 2 litres per day. I manage that easily today but do not find it easy to keep up with. For my breakfast this morning I have a mug of tea. When did I last have an ordinary English tea? I am resting at 9.10am. My weight today is 75kgs and my temperature this morning is 36c. I have a hot chocolate at 11.10am Not sure if it was quite right. Visit from brother Peter just after 12midday. He and Suzanne were en route home from Sally’s in Hampshire.
Tim Corbett checked me out at 1.30pm. My cough/cold should clear up relatively soon, but the CMV will take longer. But I should be ok for the weekend after Easter for our weekend in Southwold, although I will still probably be immune compromised. The scheduled bone marrow sample and CT scan scheduled for Kings on Monday can be done here. Steve Devereux’s consultation will not be able to go ahead as I will still be here. I do not need to continue on Tazocin and will revert to Ciprofloxacin tablets. Rested for an hour this afternoon and at 4.30pm Guido had a go at breaking up the congealing film of blood at the end of my Mid Line, using a Urokinase solution. Initially painful, it got easier with further amounts of Urokinase in a drip. Tina and Anna visited between 4.30pm and 5.30pm. Guido finished with me at 6.40pm cleaned and wrapped the line and we will use it at 10am next morning with Ganciclovir. Tonight’s Ganciclovir will be delivered via the cannula, which will be removed after use. Todays blood results are:-
Wbc: 1.5; Hbn: 9.9; PLT:102; CRP 29. My temperature is 36.1c
I go to the Day Room to set myself up to watch the FA Cup replay, between Spurs and Chelsea. Matthew rings me at half-time and tells me the good news from the Golf Holiday Company. He will get a 13% pay rise, plus a share in the profits of the company for the current financial year, which Matthew knows has been pretty successful. This is really good news!! And the culmination of much thought on Matthew’s part as to how to really tackle Steve about it, without putting him in an embarrassing position, vis a vis Longmere. Matthew wants to try to do a course in Project Management – the Prince model – so I will ask Chris Pascoe for information on the course he did in 2005. I hope Matthew does do something like this course as it would certainly stand him in good stead for the future. There will, in all probability, be life after the Golf Holiday Company! Bed at 12.45am.
Sunday 18th March 2007
I am wide awake at 4.20am with a sweaty head, so I am reading yesterday’s newspaper. I had been concerned that one of the reactions to the Methylprednisolone would be chapped hands – but not so far. I am coughing a bit between 6am and 7am. I have blood samples taken at 6.45am by Ruta whilst being assessed by Phebbey. Didn’t she do well !! I am washed and breakfasted by 8.30am. My morning temperature check shows 36.6c. I have my morning Ganciclovir via the cannula, meanwhile I am warming up my shoulder and upper arm all morning for Guido to test and flush my mid-line so that we can try it on Tazocin. My blood results today are:- Wbc: 1.1; Hbn: 7.0; PLT: 76; Neut: 1.0; CRP: 40. I am seen briefly by Dr Duncan at midday.
Before lunch, Guido does some more work attempting to flush, etc. my line without success. He concludes from his past experience that it is probable that a film of blood has congealed around the end of the line, forming a fairly long sheath back down the outside of the line, but obviously inside the vein. When flushing, the discomfort starts firstly at the top end of the line probably by the sheath of blood expanding out and pressing on the inner wall of the vein. As he pushes more flush in the point of discomfort travels down the arm (and line) suggesting the sheath of blood expanding likewise against the inner wall of the vein going backwards. Then flush liquid appears coming out of the line hole at my elbow to prove the point. All this would explain the inability to draw back blood or get a flush into the line. He cleans up the blood and flush that is running everywhere and we await advice and the decision of a doctor about the use of a suitable anti-coagulant to break down the film of blood. I get my Tazocin drip at 12.45pm despite all this.
Because my haemoglobin level was so low yesterday – let alone today! – it had been decided to give me three units of blood today. This starts at 1.15pm, with me resting peacefully on my bed while the blood trickles in! My temperature at the start is 36.2c. The rate is two hours per unit. I have a break for my Tazocin to be given to me, while Anna visits with Eva and then I resume with the third unit. However, I am now getting a lot of discomfort to my upper arm which is not resolved with a slower flow rate and in fact gets even more painful. So we go for another vein on the top of my right wrist, which seems to be ok. We have one and a half hours left for this unit, timed to finish about 9pm.
In the meantime Guido tries flushing my mid-line once again, but it is no more successful than before - just seeping back down the line to the entry point. At 7.20pm Father Foley comes with Holy Communion, which is much appreciated by me. I then go straight on to the Ganciclovir combined with a saline drip for ease of delivery. This will run for another hour and a half, by which time I have been infused and transfused more or less continuously for 10 hours! The position of my cannula is quite awkward and sensitive as it is sitting on my wrist bone. I have it bandaged up to keep it tidy overnight. It has been a long and somewhat tiring day but I am awake reading etc., until 1.20am!
Saturday 17th March 2007
I am awake about 4.20am with my cough now on my chest and feeling really congested. I cough and splutter for two hours. Am I finding it easier to drink water? Yes I think so. I get my first lot of Tazocin at 7.20am. It is Ella’s 6th birthday! And I call her at 8am to wish her a happy day. She had her ears pierced yesterday and has sparkly ear-rings and pink sunglasses! Wonderful! My temperature at 10am is 36.9c. An attempt is made by nurse Suzanne take blood samples from the line. There is no suction, so the bloods have to be taken in the usual way. A further attempt is made to deliver Ganciclovir via the line, with a heat press to ease it on its way. It is so uncomfortable I cannot take this any more and we stop and go to the cannula. Meanwhile I get a saline nebulizer session to help free up the catarrh on my chest. Tina and Linda visit this morning with some purchases for me – pyjamas and a pair of track suit bottoms to keep me going these next rolling two weeks. While they are with me the weekend consultant colleague of Tim Corbett – Dr Duncan – sees me. We discuss the chesty cough and the mid-line. He directs that we hold on the line and use the cannula on my left arm. I get Tazocin at 1pm – no problem. My weight today is 74kgs. My blood results are:-
Wbc: 1.1; Hbn: 7.6; PLT: 69; Neut: 1.0.
It is the last day of Six Nations Rugby and I have free TV courtesy of the previous occupant of this room who left a Patientline card in the TV with, as it turns out, over 12 hours viewing left.
It is all very entertaining with France emerging as the Champions with a last minute try against Scotland to beat Ireland on points difference. Meanwhile Wales beat England convincingly at Cardiff to put into perspective last week’s beating of France by the England “youth” team. Tina, Linda and Anna arrive at 7pm from Ella’s party. We are expecting to take delivery of our new Citroen C4 on Monday – exciting! I spoke to Matthew later in the evening to update him on the events of the day. Ella had asked why I was not at her party and he told her that I was in hospital and not well. He seemed to get quite upset about it as we talked. My temperature at 10.35pm is 35.5c. I get my Ganciclovir and then the Tazocin via the cannula, while Ruta cleaned up the old blood around the Mid-Line entry point in the crook of my elbow. then slept for an hour on the bed and woke with a headache, so had some paracetomol. My cough seems to be a little better – hmmm! We shall see.
It is now a week since the end of my second week of Methylprednisolone. Looking back on the experience of my first five-day session, there are a number of differences – mostly to the good. Firstly I did not “hit the wall” at the end of the session as I did when leaving Kings - and I was taking Campath at the same time. Having said that, instead I was overtaken by the bad cold that brought me into here on the following Monday. Side effects seemed to come on the scene a bit earlier and not so vigorously. The dry mouth problem has hardly featured whereas it had been a real difficulty before, lasting quite a long time. The loss of taste for water came up again and surprisingly it is only two days less this time that I felt able to start drinking water in litre-type quantities. This was ten days after finishing the Methylprednisolone. My sleep patterns have been turned upside down both times and more or less for the same length of time. I am typing this retrospectively, but the first reasonable night’s sleep this time was the night of 26th March, two weeks and three days after the end of the Methylpred session, compared with only ten days of late-going-to-bed evenings. But I suppose the biggest difference has been in my ability – or otherwise – to eat and enjoy food. In February it took a whole week to find anything I could eat in the way of a substantial meal and a further 2 weeks before things started to taste good – or reasonably good. Having the knowledge of that difficult experience, this time we didn’t have to try all sorts of different food in vain hopes of finding a tasty meal. But more surprising is that I have been eating the hospital meals more or less from the start of my stay here.
Friday 16th March 2007
Awake at 5am – the steroid effect is still with me – and went to the kitchen to get a drink or something, only to find that the food thief had been at it again! Despite my threatening notice. This time it was a very nice sandwich, which Paul Wehrle had brought for me – pastrami and rocket – that had disappeared without trace. I don’t believe it! At 7am I am hooked up for Tazocin, 9am I am showered and at 10am Guido and Sr. Geraldine fit me with a smaller version of the PICC line – a mid line – in my right arm. There is lots of blood and lots more bleeding afterwards. However, Guido takes blood samples from the line and then starts me with Ganciclovir and all is working well. Tim Corbett on his rounds at 12.30pm calls by to check me over. We discuss the CMV and its effect on my stay here. At least two weeks is still the order of the day. I mistakenly connect CMV with the cough and cold that brought me into hospital. As Tim Corbett leaves me so in walks Bill Swallow and of course we start to chat. After a time – I don’t know how long – I get a message from the nurses’ station that Tina is on the phone enquiring after me and tears me off a strip for not answering her text messages and not letting her know how the line fitting went. I had in fact switched off my phone when Tim Corbett visited and forgot to switch it back on when Bill arrived. I apologise but we are not reconciled. Bill leaves about 2pm-ish to be followed shortly by Anna, Nick and Eva, fresh from la belle France last night. I have a late lunch of ham, sliced carrots and celery from the food I brought in while we talk about their two weeks’ of travel and house searching, but especially the house they are interested in buying in La Liquiere in the Languedoc. They show me photos of it and it certainly looks very appealing, albeit needing a lot of work doing to it.
About 4.45pm I get my head down for a rest and sleep, bearing in mind all this visiting and talking gets me coughing and spluttering and tires me out. Tina arrives at 8pm with Linda hotfoot from her drive down from Barlestone. Tina and I clash over the business of no morning contact in front of Linda – who makes a discreet exit - and one of the nurses. I won’t go into details but we are both uptight, both in the wrong. Tina is still stressed by the whole business of my being in here, the fitting of the line and the CMV, despite her speaking with Viki Bevan at Kings yesterday. As usual it is easier for me – I am the patient; I get the attention; the carer has to get on with it. It is so unfair and she doesn’t deserve to be so stressed. We make up and have a big hug-in. I have a late dinner of two bowls of Covent Garden pea and ham soup, followed by a chicken hotpot. Both are delicious. My weight today is 74kgs.
At 10pm Phebbey, on the night shift, gives me the Tazocin by bolus in the line. It is painful.
This followed by an attempt to give me the Ganciclovir through the line. It is also most uncomfortable, including tenderness on the outside as well as on the inside, to the extent that Phebbey stopped doing it and inserted a cannula instead. The remainder of the Ganciclovir is delivered by the old method. At 12.20am I am set for bed.
Thursday 15th March 2007
Up for a 7am Tazocin bolus – a syringe injection - and an 8.15am blood test. Breakfasted and then a 9.30am Ganciclovir infusion, after which I showered and then found Paul Wehrle on a visit. While Paul was with me Paul Hill did his round, so he disappeared for a while, then at 12.30ish Tina came for her lunchtime visit. Tina had been trying to make contact with Viki Bevan at Kings and was to speak with her in the afternoon – with good result – putting things into a better perspective for her and us. After all the activity of the morning I was knackered, what with all the coughing my cold was giving me, took paracetomol and I rested - and slept - the afternoon from 2.30pm until 5pm, interrupted slightly by the fitting of a cannula to my left hand. At 5pm Keith Arscott came for a visit - during which Fr. Foley also came to give me Holy Communion - and of course Tina came down after work. My blood results for today are:
Wbc: 1.4; Hbn: 8.6; PLT: 56: Neut: 1.4; Crp: 57; My weight tonight is 75kgs.
I felt a lot better this evening after the afternoon sleep and maybe the anti-biotics are having a beneficial effect. Anna is due back to Hurstpierpoint later this evening off the Newhaven ferry, from her journeys round the Languedoc and Brittany house viewing. That will be good for Tina as it must have been awful alone in the house, especially with that ridiculous news about the CMV. My cannula position hurts. They will be fast running out of veins for me; I feel a bit like a pincushion already. Sat up reading and doing Sudoku until 1.15am, then slept with my I-pod on.
Wednesday 14th March 2007
I am up four times in the night to the toilet and also had the head sweats. Just like a cold would do to me. But some good news is that my enforced rest with feet up on the bed seems to have considerably dispersed a lot of the oedema in my feet and legs, such that I have dispensed with the ridiculous tights. My temperature at 6.40am is 36.5c. It is a bright blue-sky morning outside, just right for a walk out, which is exactly what Guido has arranged, albeit on his official day off. He takes me to have my Pentamidine Nebuliser at the nearby Sussex House to give my lungs another month’s anti-biotic protection. He also uses it as training of two of his staff. Shortly afterwards Tina arrived for her lunchtime visit, while my lunchtime Tazocin is given to me by bolus injection rather that saline drip. It takes 5 minutes, rather than half an hour. It is no problem and gives the nurses a little more patient time – just. My 2.50pm temperature was 37.4c
I then had afternoon visits from Jim Rodgers and Eric Ross and telephone calls from Jerome – who is just back from Hong Kong with a job - and Martin Stevens. This is followed by a visit from Fr. David Foley, the parish priest for Kemptown who gave me the anointing of the sick, explaining that it was no longer the anointing of the dying – for which I was grateful! The results of my bloods tests this morning were:
Wbc: 1.7; Hbn: 9.7; PLT: 57; Neut: 1.7 and - a new one for me – Crp: 69 (this the measure of infection fighting level in the blood – as I understand it).
Tina came down about 6.30pm and sat with me until we were interrupted by “Dr. Tindall” – whom I now know to be Vicki Tindall a friend of (Dr.) Emma at Kings. She simply blurted out that they had received a blood result from Kings for Cytomegalovirus (CMV) with a reading of 53k when it ought to be 10. This was to treated by the anti-biotic Ganciclovir (380mg twice daily) for at least the next two weeks. At the time this seemed to be really big impact news, but Dr Tindall did not have the intuition to recognise this or the skills to deal with it if she had so recognised it! We were left like a couple of goldfish having been fished out of the pond, gasping for air, explanation and a friendly hand. Tina was particularly distressed by the news.
We spent the next hour or more trying to comfort each other, not really knowing what it all meant, especially in the current context of my having been admitted with this cold and cough.
When Tina left, we had resolved that she would contact Viki Bevan at Kings for a chat to get a better perspective on it. Additionally I resolved to find out if there was an oncology counsellor at RSCH who we could contact as well. All this was put behind me though when I went to the kitchen fridge to get a drink of fruit juice about 11.30pm to find that someone had been at my food, despite its being clearly labelled. A Covent Garden Soup (Lentil and Ham), a small bottle of mango and passion fruit juice and a tub of yoghurt, honey and ginger had been stolen and the cartons dumped in the kitchen waste bin. I was trailing around my drip at the time, spitting rivets and making quite a bit of “annoyed” noise, disturbed Adela and Phil, the night shift and was obliged to tell them about it. I checked all the labelling on my remaining food items and then wrote a note on a sheet of paper which said “Keep your thiefing hands off my food – Roland room 2” and stuck it in the fridge on my food. Needless to say, after that I had a sweaty night with head sweats and a temperature of 37.2c
I have decided not to slavishly record every meal whilst I am here. My breakfast is always based on food Tina brings in for me, like mango & passion fruit juice, Greek yoghurt, honey, Eat Natural cereal, mango, pineapple or banana, plus white or brown toast and marmalade from the ward kitchen. I later add a mug of tea to that as I get my taste buds back. The hospital lunches and dinners I invariably find are both nourishing and quite tasty, with a good selection and day-by-day variety. There is always soup, meals like chicken lentil casserole, beef and mushroom pie, lamb stew, etc. plus steam puddings, pie and custard, ice cream, or fruit for afters. All good stuff!
Tuesday 13th March 2007
I am about to have another and very different hospital experience; this time in the RSCH’s specialist HIV ward, previously known as the Elton John Unit because of the famous man’s earlier sponsorship of it over time. However it was not until later in the week that I realised that the ward was so specialised. As far as I knew it was just a ward in the hospital with a bed for me. It was more than a bed in fact, as each of the six beds in the ward had their own room. Consequently, and unlike the Kings experience, it was some time before I saw any of the other patients and in some cases, never saw them. My window looks out on to Eastern Road, Brighton from the east wing of the front of the original Victorian hospital building. Unfortunately, because of the buildings opposite (including The Sussex Eye Hospital – with apologies to Art Deco) I don’t have a sea view, just a seagull view!
I am awake and thinking at 7am and call Tina and Matthew to tell them where I am. At 7.40am I have my first of four daily doses of Tazocin and am told my temperature has now dropped to 36.2c. Then at 8am the Patientline rip-off TV starts up of its own volition with GMTV – one hour’s free TV to whet the appetites of the vulnerable! I meet my first nurses, including the ward manager - Guido Tapia – who I am to find out later has taken me under his wing. This man is just great and so experienced, having run this ward for 17 years and having been a nurse for the past 35 years since he came here from Ecuador. I spend the day lying on my bed, reading, making notes and - very importantly – resting, as I am coughing and spluttering all the time and using up a lot of energy doing it. I call Matthew, Anna (in Brittany), Daphne and Peter to let them know what is happening. At 12.30pm, I am seen by Dr Tim Corbett, who tells me I will be here until the weekend, when I should have had enough Tazocin to sort out my infection. My blood counts from last night are:-
Wbc: 1.5; Hbn: 10.1; PLT: 67; Neut: 1.3. My weight today is 76.5kgs – down 2.5kgs from Friday and that’s not good given the amount of fluid still in my legs. My temperatures in the afternoon were both high 37.6c and 37.7c. One feature of my admission here is that I am the only person who knows what my day-to-day medication should be, so I am left alone to take it myself from my weekly box I brought from home. All the remaining tablets I brought with me are locked away in the cabinet in my room, but together with the bottle of Itroconozole – not the Nystatin, nor the Corsodyl – just the Itroconozole!! So I have to ask if I can get it out twice a day – what is this all about!!
In the evening I discuss my food intake with Guido as I want him to understand the difficulty I have with my appetite and weight loss. He is very good. Tina is here until quite late, after which I do Sudoku, listen to my I-pod and turn in for bed at 11.40pm. We have labelled my packs, etc of food and drink and put them in the ward kitchen fridge.
Breakfast: Mango & passion fruit juice, Greek yoghurt, honey, banana, ginger;
Lunch: (Don’t remember)
Dinner: Mango and passion fruit juice, sweet and sour chicken and rice (surprisingly tasty)
Supper: Covent Garden Lentil and Bacon Soup – mine (superb)
Three Weeks in Howard 2 Ward RSCH
Monday 12th March 2007
We resolved yesterday that I would make phone calls today to get advice and direction on this cold and cough. But first I had a shaky walk up the village to get some ham for lunch and some avocado pears. I stopped to speak to Cath in the High St. and tell her my latest, which obviously didn’t sound very good to her as she got quite upset. I think I must also have looked very shaky but told her I was going to make the contacts to sort things out. This business of frequency of the need to urinate kicked in at the Deli., after buying the ham. But the assistant would not let me use their toilet - “Health and Safety”. “Stuff you,” said I, “If I pee myself before I get home”. Anyway I rescued my plight at Gibsons, thanks to Linda. Really annoying and the last time I go into the deli, unless I go back later and tell them I am now relieved! Now I know how Victor Meldrew feels about life! On my return I list my symptoms –
Temp 36.8c, nose catarrh and phlegm, bit of a headache, feet and legs like an elephant’s with oedema, urinating every 15 minutes or so and feeling very weary. After several abortive attempts I get through to the chemo-therapy room, haematology outpatients and speak to Charge Nurse Teea and then (Dr) Austin. He advised me to take two paracetomol, co-trimoxazole (septrin) 960mgs, try to get a blood test done today (and Friday) and if I could manage it, to get to see Dr. Paul Hill for an examination.
Thanks to Mo McGhee, Paul Hill can see me at 3pm this afternoon in his ward at PRH. Tina gets home and drives me up to hospital for 3pm. “I have only 5 minutes,” he tells us frantically when he appears at 3.30pm. “What are your symptoms?” he demands with urgency, as he checks me over. I rattle them off as I had done with Austin in the morning. “You feel warm”, he observes as he feels my chest, “Let me check your temperature”. “It is 37.7c.” he remarks, scribbling frantically on one of the medical note sheets he always uses. “I am going to admit you, give me a little time to sort out something”. Bang goes his “I have only 5 minutes”. Tina joins me from the ward day room to await developments. What is going to happen? How will the day end? Where will I / we end up? About 30 minutes later Paul returns to tell us he has a bed for me in the Medical and Surgical Assessment Unit at Royal Sussex County Hospital (RSCH) Brighton and we should get there as soon as possible with a bag for 2 or 3 nights.
We are at the RSCH about 5.30pm, but first we have to go through the procedure of registering into the hospital through their A & E admissions and Triage Nurse system, which is “down” and therefore being paper driven this evening. Fortunately, Tina remembers the “To Whom It May Concern” letter, which Viki Bevan gave us in the event of such a need to get priority treatment. I am not thinking very straight at this time and it is good that she is. It is my passport to immediate attention. I contact Matthew while we are waiting in a bay in A & E to let him know what is happening. It is 6pm when I am admitted and indeed it is to a bed in the Medical and Surgical Assessment Unit (MASU), as already arranged by Paul Hill. I am there for a seeming eternity. I have blood samples taken at 7pm, which later show:
Wbc: 1.20; Hbn: 9.8; Plt: 83; Neut: 1.20.
I am seen by a very handsome Dr (Victor), who makes immaculate notes about my background and condition - but that is just one stage. We have brought a coolbag full of food bearing in mind the difficulties I have been having with my eating. I am able to have a dish of pork casserole micro-waved. I then think we agree that Tina should go home about 9pm as it looks as if it will be a long night before my assessment is completed and they are able to find me a bed on a ward – if they are actually able to do that! I am made aware that I am on 15-minute observations for blood pressure and temperature while I am being assessed. This is from an efficient Charge Nurse (Morgan). I recall going for an x-ray and possibly other checks – it is a little vague now. That takes me away for about an hour from the Unit and the 15-minute observations slip. I ask an auxiliary nurse to check on this, but pick on the wrong one. He is not in the right job, doesn’t want to be there and certainly doesn’t want to be fussed with doing my observations. Both his temperature checks are dubious – not right into the ear. “Normal” he tells me. I am unhappy with this for several reasons, one of which relates my doubting their accuracy. Fortunately I have another check by the night duty doctor (Dr) James at 12.55am, which reveals that my temperature is in fact 38.1c. Fever pitch!! What a good call by Paul Hill this afternoon to get me in. How would I have known that I had such a temperature if I was at home in bed? I am prescribed intra-venous anti-biotic called Tazocin after referral to Dr Tim Corbett. By 2.30am my temperature is down to 37.8c. At 3am I am transferred to Howard 2 ward, escorted by Morgan, with my bags of clothes and the cool bag of food.
With my rather sudden hospitalisation, typing my log is the last thing on my mind but eventually I get back to it. I am in fact only now resuming typing this log 9 days later, on 21st March! – so I have a lot of catching up to do while lying on my hospital bed.
Breakfast: Mango and passion fruit juice (not quite right); yoghurt, Eat Natural cereal, cut pineapple, honey; water.
Lunch: Ham salad with carrots and celery;
Dinner: Spanish Pork Casserole in hospital microwave in MASU (good)
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