Sunday 2nd December 2007
The morning routine has not settled yet and I don’t have my blood samples taken from my Hickman line at the time I have my first Tazacin infusion. Instead one of the phleb team takes them in the traditional way from my arm. It turns out they don’t get to the laboratory or the results are not put on record! Sister Peter brings me Holy Communion at 11.30am and Tina follows shortly afterwards, while Anita is cooking lamb shank at home. I have a restful afternoon and evening, reading the Sunday paper and checking out my camera. My weight today is 72.9 kgs but I suspect the scales are inaccurate.
Saturday 1st December 2007
Today is my 64th birthday! Fancy spending it in hospital! The change to a different nursing regime is quite noticeable. The Renal team appears to have a higher nurse - patient ratio, although they do have health care assistants to help as well. I get observations at 6am and then see no one until 9.30am, when my Tazacin infusion is usually given to me around 7am. Matthew visits at 1.30pm with a super present of a book about the battles of 1916. Tina comes in at 4pm with Anita and Bob, who are up for the weekend. I have a stack of birthday cards, a birthday balloon and my present is a Nikon SLR digital camera! With my old Canon having gone caput a few months back and my intending to replace it after my transplant, this came as a complete surprise. Tina also brings me a chocolate birthday cake and this is followed by another cake, with candles, from the kitchen staff with all the nurses singing me “Happy Birthday”. All very embarrassing but very nice. Shortly after Tina and company leave I am offered a move back to ward 1, but I am still under the Renal nursing team. Having missed my afternoon nap, I have a long sleep in the evening. My blood results today are - Wbc: 2.5; Neuts: 1.5; Hbn: 10.4; and PLT: 72. My weight is 74.4 kgs.
Friday 30th November 2007
Today has started very well. After calling Dave Lloyd with a welfare update, I get calls from Steve Scott, Martin Stevens and Jeanette. I see Ros Johnston on her rounds. We conclude that things seem to progressing quite well as I am bringing up lots of the nasty stuff from my lungs with my physio exercises. She tells me that Steve Devereux has been in contact with Tim Corbett to suggest that under the circumstances it would be best to put the transplant back to after Christmas. My CT scan could be at the end of next week before my discharge or sometime in the following week. I have visits from Sarah and Paul and then Mia again. All six beds in Haemotology are taken and another patient is having to be admitted, so late afternoon I am moved from ward 1 to ward 3 and my nursing care is “sub-contracted out” to the Renal team. I have less shelf space for all my things! Then toiletry evidence suggests that the C. Difficile “scare” may be over, but I am taking the Metronidazole until Sunday. My blood results today are - Wbc: 4.2; Neuts: 2.5; Hbn: 9.6; and PLT: 69.
Thursday 29th November 2007
I have a passing visit from Sister Peter around lunch time. As my neutrophils are 1.9 today I have a dose of GCSF and it is looking like I will be having GCSF every other day in order to keep my levels above 2.0. It is a lovely day outside so my afternoon exercise is a walk right round the outside of the hospital. The day is generally uneventful, except for a few changes of patients in the ward. Tina visits about 5pm en route to an evening at Matthew and Charrise’s. My blood results are - Wbc: 3.7; Neuts: 1.9; Lymph: 1.4; Hbn: 9.3; and PLT: 74. My weight is 74.2 kgs.
Wednesday 28th November 2007
I get a morning visit from Matthew together with decorative masks made for me by Ella and Lily. That cheers me up no end! I am also cheered by Sangeeta’s conveying to me the possibility that a CT scan might be sufficient to measure progress with the treatment. Thus avoiding the need for a further bronchoscopy. This will be confirmed later after consultation with the chest team. Tina has had a day out shopping in Brighton with Linda and Sue from work and they visit me about 4pm. Whilst they are here, Sangeeta comes with news that I may have to be moved from Haemotology to Catherine James ward. I am very reasonable about it, although saying that I would prefer not. Tina takes a far more determined stand and it does not happen! Good for her. I think I would have simply “rolled over”. I am well into Anna Politkovskaya’s diary - heavy stuff going on in Russia and Chechnya, with top level sanctioned murders, the re-creation of a “single party” state and electoral vote rigging. The latter is confirmed in the subsequent state elections of 2nd December!
Tuesday 27th November
As I am getting my first Tazocin infusion anywhere between 6 and 7am, I find I am showering around 7.15am or 7.30am whilst no one else is trying to get to the shower / toilet at that time. That sets me up nicely for breakfast and then a walk down to the hospital shop to get my paper - and for one or two others in the ward. The exercise is good for me and so is the routine - well so far anyway! My lung exercises seem to be going well. I see Sangeeta Atwal for my morning check up. As my diarrhoea is persisting, she advises I try to drink three litres of liquids per day, so as not to dehydrate. She has also prescribed a saline nebulizer four times daily to help loosen the mucus in my lungs. My blood results are - Wbc: 3.8; Neuts: 2.0; Lymph: 1.5; Hbn: 9.8; PLT: 568 and CRP 5. My weight is back down to 73.2 kgs.
Monday 26th November 2007
I am having honey and mixed nuts with my Ready Brek breakfast to make it tastier and Tina has brought in some Smoothies for me as well. With a slice of toast, that makes quite a filling breakfast. I am also trying to have a Fortisip three time a day, although often I am feeling too full to have it. I have visits today from Joyce and Vincent Meagher and Mia Morris. In the afternoon Rebecca, the physic, sees me and explains the physio-therapy breathing exercises I should do. The idea is to inflate the lungs in such a way as to draw out the mucus from the alveoli but to avoid excessive coughing. I am to do them twice daily for about 15 minutes - and they seem to work straight away! She recommends I have regular daily exercise, like walks around the ward. I learn that my lung condition is called bronchiectasis. I also hear that Andre Jansen from Kings has called the ward for an update on my situation. Tina visits as usual about 4.30pm. My blood results are - Wbc: 4.8; Neuts: 3.1; Lymph: 1.2; Hbn: 9.5; PLT: 59; and CRP < 5. I spend the evening resting and reading.
Thursday 13 December 2007
Back in Hospital to Sort out my Chest
Sunday 25th November 2007
I am up and doing about 8am. I have a return of diarrhoea overnight and have to give samples. My weight this morning is 74.2 kgs - up a little. Father David Foley calls to give me Holy Communion after breakfast and I am seen by Tim Corbett and Sangeeta around 11.20am. I am to have some more Metronidozole strong anti-biotics for the diarrhoea to deal with any possible return of C. Difficile. This means no alcohol, so the “Guinness plan” has to be suspended. The medical plan is to run the intra-venous anti-biotics together with the physic-therapy for the next two weeks, then repeat the CT scan and bronchoscopy to track progress. The idea is to optimise my chest condition ahead of the impending transplant and to liaise with Kings on timing. It is possible that the latest provisional date I have for admission to Kings - 10th December - might still be a runner, if it is decided to go straight from here to the transplant. If not, perhaps a week later might still be feasible. Tina arrives at 12.20pm followed shortly by Bill and Jan Swallow. After Tina left I made my blog up to date and type out some emails to overseas cousins and friends. I don’t have my Gentamycin dose this evening as its level in my blood is still high and too much might affect my kidneys. Clever aren’t they? I have a quiet evening reading and I give Mary Roberts a call. My blood results today are - Wbc: 2.3;
Neuts: 1.2; Lymph: 0.9; Hbn: 9.1; and PLT: 59.
Saturday 24th November 2007
I am awake at 7.15am for a blood test and my morning Tazocin. I check my weight. It is 75 kgs on ward scales, but 73.2 kgs on the walk-on scales in the Day Unit downstairs. I must try not to get paranoid about a) my weight; and b) the differences between various weighing scales! My breakfast includes Ready Brek, the nearest the hospital can get to porridge and it is quite tasty! Tina calls to tell me that our 5 amp fuse has blown again. It blew about two weeks ago for the first time in years, but twice in short time is significant. It is also a very cold morning. I talk her through the repair. This is overheard by my bed neighbour, Terry, who gives me some good advice about getting a new fuse box and having our wiring checked over and maybe replaced. Given my situation and with winter approaching we want to minimise any electrics problems in the house. I call Stephen Pitt as he knows every handy person in our area!
I am checked over by Dr Sangeeta Atwal, the new registrar. I am still bringing up plenty of stuff from my lungs. I am to have a dose of immunoglobulin - Vigam - later today to strengthen my immune system. I am also prescribed Puriton anti-histermine tablets to help with the annoying itching I am still getting on my back, chest and arms. I am using the Doublebase cream to sooth the irritation, but guess I just have to put up with it for the moment. I am finding my appetite is slowly returning to normal and hopefully, I can start to put on some weight again. Tina visits me from 2pm for a couple of hours, bringing me a few goodies, including some cut pineapple and Guinness - purely for medicinal purposes of course! My Vigam infusion runs for about two hours to 6.30pm and is followed by an hour of Gentamycin. I then have a doze for an hour in the evening before getting back into my book. I bed down around midnight.
Friday 23rd November 2007
I have another easy morning but Tina hurts her lower back, bending to pick something up. She was a little energetic raking leaves in the garden on Wednesday and felt a slight twinge then. As a consequence she does not go in to work. By 11am I feel rather tired and have two hours sleep on the settee! We are just getting lunch when I have a call from the RSCH to say I can be admitted this afternoon. I do not want to risk Tina doing anything more to her back and fortunately Jim is available to take me down. I am admitted to a shared ward - Renal and Haematology - with six beds, two of which are for haematology patients. I am in bed 11 with Abi looking after me until 8pm. I am on Tazocin four times per day and Gentamycin once. I have these at 7.30pm with a second Tazocin around 11pm. The air conditioning in the ward gives it a temperature just below comfortable. It is probably ok for people on the move all the time, like the staff, but not so warm for the patients! I send 28 text messages to family and friends to say that I am in here. I have started reading “A Russian Diary” by Anna Politkovskaya, the journalist who was murdered for her anti Putin government views.
Monday 19th to Thursday 22nd November 2007
I have had my chest infection(s) for over twelve weeks now and no end in sight! Having had my bronchoscopy on Friday I am hoping to get a clearer picture of the problems today in my clinic with Tim Corbett. First thing today is to get the filling done in my wisdom tooth. I have had a temporary filling for over ten weeks and it really needed doing. I have had the ok from Kings for the treatment and Andre’s letter requests I have a short course of general anti-biotics afterwards. My dentist does some neat work and then prescribes me five days of Amoxycillin 250mgs. That is a good job done! My stomach definitely seems to have shrunk since Friday and I have not eaten that much over the weekend. A combination of several things I expect. I started the Voraconozole on Thursday evening and that may have shifted the balance somewhat. My porridge breakfast is a another squeeze and I force a sandwich down me for lunch. Tina comes with me for my afternoon clinic which is with Ros Johnston as Tim is still on the ward. Vicky Tindell and Nicola Worcester are in on it as well. Unfortunately the results from the bronchoscopy are not available but Ros tells me that I need to be admitted for seven to ten days of anti-biotic treatment - what form depending on the type of bug(s) they have found in the bronchoscopy samples. I will also have some form of physio-therapy to help shift the muck in my lungs. I have an image of being beaten on the chest by seven dusky maidens, but don’t expect that will happen! I can now stop the folic acid and furosemide tablets. My neutrophils are 2.7 today and my weight is down 2.2 kgs since last week at 72.8 kgs. Not surprising really as I have lost the fluid in my lower legs as well as my appetite. The stir-fry chicken dinner tonight is just right for me.
There is no bed for me on Tuesday but I have to go to the RSCH for my Pentamidine nebuliser at 3pm. I start catching up on last week’s blog in the morning and then have an hour’s sleep before lunch. I feel uncomfortably full long after breakfast and lunch, thanks to my shrunken stomach and hope this effect does not last too long. Strangely I think my taste buds have taken another turn. Perhaps it is the after-effects of Friday, or my new medications, or a combination of both. Whatever it is I am feeling peculiar and am not happy about it! Tina takes me down to Brighton as I sense I could feel a bit groggy after the nebuliser. Senior staff nurse Diane supervises my Pentamidine and tells me that there will be a bed for me on the Haematology ward tomorrow. I am still tired when I get home and have an hour and a half’s sleep. I have a Guinness before a light tuna and rice dinner.
Wednesday is another frustrating day as there is still no bed for me. Tina and I have a fairly brisk walk out for 30 minutes around 10am to get some fresh air in my lungs. I have not been getting any exercise of late and it was good for me to do it. I finish last week’s blog, struggle with some lunch and then have three hours sleep from 3pm. Food is still not a pleasure!
There is no bed again for me on Thursday and I am told that it will now be Saturday. I am coughing up phlegm quite a bit and wonder if my chesty problem has taken a change of some sort. I have an easy morning and get out to stretch my legs and get some air in my lungs before lunch. Tina and I go down to the RSCH at 3.30pm for my routine blood test. My results are - Wbc: 4.3; Neuts: 2.6; Lymph: 1.2; Hbn: 10.1; PLT: 82; and CRP: 6. My weight today has gone up a bit since Monday to 74 kgs.
I am up and doing about 8am. I have a return of diarrhoea overnight and have to give samples. My weight this morning is 74.2 kgs - up a little. Father David Foley calls to give me Holy Communion after breakfast and I am seen by Tim Corbett and Sangeeta around 11.20am. I am to have some more Metronidozole strong anti-biotics for the diarrhoea to deal with any possible return of C. Difficile. This means no alcohol, so the “Guinness plan” has to be suspended. The medical plan is to run the intra-venous anti-biotics together with the physic-therapy for the next two weeks, then repeat the CT scan and bronchoscopy to track progress. The idea is to optimise my chest condition ahead of the impending transplant and to liaise with Kings on timing. It is possible that the latest provisional date I have for admission to Kings - 10th December - might still be a runner, if it is decided to go straight from here to the transplant. If not, perhaps a week later might still be feasible. Tina arrives at 12.20pm followed shortly by Bill and Jan Swallow. After Tina left I made my blog up to date and type out some emails to overseas cousins and friends. I don’t have my Gentamycin dose this evening as its level in my blood is still high and too much might affect my kidneys. Clever aren’t they? I have a quiet evening reading and I give Mary Roberts a call. My blood results today are - Wbc: 2.3;
Neuts: 1.2; Lymph: 0.9; Hbn: 9.1; and PLT: 59.
Saturday 24th November 2007
I am awake at 7.15am for a blood test and my morning Tazocin. I check my weight. It is 75 kgs on ward scales, but 73.2 kgs on the walk-on scales in the Day Unit downstairs. I must try not to get paranoid about a) my weight; and b) the differences between various weighing scales! My breakfast includes Ready Brek, the nearest the hospital can get to porridge and it is quite tasty! Tina calls to tell me that our 5 amp fuse has blown again. It blew about two weeks ago for the first time in years, but twice in short time is significant. It is also a very cold morning. I talk her through the repair. This is overheard by my bed neighbour, Terry, who gives me some good advice about getting a new fuse box and having our wiring checked over and maybe replaced. Given my situation and with winter approaching we want to minimise any electrics problems in the house. I call Stephen Pitt as he knows every handy person in our area!
I am checked over by Dr Sangeeta Atwal, the new registrar. I am still bringing up plenty of stuff from my lungs. I am to have a dose of immunoglobulin - Vigam - later today to strengthen my immune system. I am also prescribed Puriton anti-histermine tablets to help with the annoying itching I am still getting on my back, chest and arms. I am using the Doublebase cream to sooth the irritation, but guess I just have to put up with it for the moment. I am finding my appetite is slowly returning to normal and hopefully, I can start to put on some weight again. Tina visits me from 2pm for a couple of hours, bringing me a few goodies, including some cut pineapple and Guinness - purely for medicinal purposes of course! My Vigam infusion runs for about two hours to 6.30pm and is followed by an hour of Gentamycin. I then have a doze for an hour in the evening before getting back into my book. I bed down around midnight.
Friday 23rd November 2007
I have another easy morning but Tina hurts her lower back, bending to pick something up. She was a little energetic raking leaves in the garden on Wednesday and felt a slight twinge then. As a consequence she does not go in to work. By 11am I feel rather tired and have two hours sleep on the settee! We are just getting lunch when I have a call from the RSCH to say I can be admitted this afternoon. I do not want to risk Tina doing anything more to her back and fortunately Jim is available to take me down. I am admitted to a shared ward - Renal and Haematology - with six beds, two of which are for haematology patients. I am in bed 11 with Abi looking after me until 8pm. I am on Tazocin four times per day and Gentamycin once. I have these at 7.30pm with a second Tazocin around 11pm. The air conditioning in the ward gives it a temperature just below comfortable. It is probably ok for people on the move all the time, like the staff, but not so warm for the patients! I send 28 text messages to family and friends to say that I am in here. I have started reading “A Russian Diary” by Anna Politkovskaya, the journalist who was murdered for her anti Putin government views.
Monday 19th to Thursday 22nd November 2007
I have had my chest infection(s) for over twelve weeks now and no end in sight! Having had my bronchoscopy on Friday I am hoping to get a clearer picture of the problems today in my clinic with Tim Corbett. First thing today is to get the filling done in my wisdom tooth. I have had a temporary filling for over ten weeks and it really needed doing. I have had the ok from Kings for the treatment and Andre’s letter requests I have a short course of general anti-biotics afterwards. My dentist does some neat work and then prescribes me five days of Amoxycillin 250mgs. That is a good job done! My stomach definitely seems to have shrunk since Friday and I have not eaten that much over the weekend. A combination of several things I expect. I started the Voraconozole on Thursday evening and that may have shifted the balance somewhat. My porridge breakfast is a another squeeze and I force a sandwich down me for lunch. Tina comes with me for my afternoon clinic which is with Ros Johnston as Tim is still on the ward. Vicky Tindell and Nicola Worcester are in on it as well. Unfortunately the results from the bronchoscopy are not available but Ros tells me that I need to be admitted for seven to ten days of anti-biotic treatment - what form depending on the type of bug(s) they have found in the bronchoscopy samples. I will also have some form of physio-therapy to help shift the muck in my lungs. I have an image of being beaten on the chest by seven dusky maidens, but don’t expect that will happen! I can now stop the folic acid and furosemide tablets. My neutrophils are 2.7 today and my weight is down 2.2 kgs since last week at 72.8 kgs. Not surprising really as I have lost the fluid in my lower legs as well as my appetite. The stir-fry chicken dinner tonight is just right for me.
There is no bed for me on Tuesday but I have to go to the RSCH for my Pentamidine nebuliser at 3pm. I start catching up on last week’s blog in the morning and then have an hour’s sleep before lunch. I feel uncomfortably full long after breakfast and lunch, thanks to my shrunken stomach and hope this effect does not last too long. Strangely I think my taste buds have taken another turn. Perhaps it is the after-effects of Friday, or my new medications, or a combination of both. Whatever it is I am feeling peculiar and am not happy about it! Tina takes me down to Brighton as I sense I could feel a bit groggy after the nebuliser. Senior staff nurse Diane supervises my Pentamidine and tells me that there will be a bed for me on the Haematology ward tomorrow. I am still tired when I get home and have an hour and a half’s sleep. I have a Guinness before a light tuna and rice dinner.
Wednesday is another frustrating day as there is still no bed for me. Tina and I have a fairly brisk walk out for 30 minutes around 10am to get some fresh air in my lungs. I have not been getting any exercise of late and it was good for me to do it. I finish last week’s blog, struggle with some lunch and then have three hours sleep from 3pm. Food is still not a pleasure!
There is no bed again for me on Thursday and I am told that it will now be Saturday. I am coughing up phlegm quite a bit and wonder if my chesty problem has taken a change of some sort. I have an easy morning and get out to stretch my legs and get some air in my lungs before lunch. Tina and I go down to the RSCH at 3.30pm for my routine blood test. My results are - Wbc: 4.3; Neuts: 2.6; Lymph: 1.2; Hbn: 10.1; PLT: 82; and CRP: 6. My weight today has gone up a bit since Monday to 74 kgs.
Wednesday 21 November 2007
I Finish the Ambisome and Have Another Bronchoscopy
Saturday 17th to Sunday 18th November 2007
I have not slept too well probably because I slept so much yesterday. I eventually get up and have a tentative breakfast of porridge. I am not feeling hungry but know I must try to eat something. We have a lazy morning and my lunch is soup and some avocado pear. I have a visit from Michel after lunch and then rest up for the remainder of the afternoon. Strangely, I have two mugs of tea. I cannot remember the last time I had tea and enjoyed it! I have a cheese omelette for dinner but cannot taste it and rest up for the evening.
I manage some porridge again on Sunday morning, starting late and go to 10.30am Mass at Keymer. We arrive late, leave early and sit at the back, behind the glass screen. This is to avoid the risk of contact with a lot of people. Matthew, Charrise and the girls come for lunch, but I am feeling rather weary by 1pm, before they have arrived, and go up for an hour’s sleep. That helps. Tina’s Spanish pork casserole is good as usual. Today’s Observer carries an article about Pseudomonas as the new “super bug” causing fatalities in hospitals alongside MRSA and C. Difficile. Not very reassuring!
Friday 16th November 2007
I am “nil by mouth” from midnight and am woken up by staff nurse Leo about 6.40am for a blood test and to set up my platelets infusion, which runs for two hours. There is some confusion as to how I should get to the Endoscopy suite, but eventually I am escorted by two porters and a trolley bed! I have my procedure semi-prone - which feels strange - as opposed to sitting upright at Kings. However everything else seems to be better and I am conscious throughout, despite the sedation. Again it is something not to be repeated in a hurry! Kate Hurt carries out the procedure with the consultant, a Dr. Jackson, looking on with two rather interested students. There is the calming presence of a nurse - Jill - at my arm giving me reassurance and using a suction instrument in my mouth. Phase two - the obtaining of mucus samples doesn’t work and it is thought the instrument is faulty. Not so - a lump of my mucus had blocked the tube! At the end I am told that they have some good samples to check for bugs. However, Dr Jackson says that my airways are dilated; I will need physio-therapy and intra-venous anti-biotics as part of a plan to set me up for my transplant. He mentions Pseudomonas as a particular issue. He will be in touch with Tim Corbett about this and the results of the examination of the samples.
I feel quite good as I am moved into the recovery room, where I rest for an hour, but with a headache coming on strong. I ask for some paracetamol but cannot be given any as I am not on my ward. As I am being pushed back to my ward I am sick, although I have not eaten since 9pm the night before. I am told it is bile and that I am probably de-hydrated. I am given paracetamol, I should drink sips of water and I have some soup for my lunch. I then rest for another two hours before Tina comes to take me home. I am feeling a bit groggy and am glad I did not have to drive myself. Ten minutes into our journey and I am sick again. This is not nice at all! We get home to find the heating off and the house freezing because of a power cut. I go straight to bed and stay there. I am feeling lousy and just sleep. I have no food but keep on with the water.
In my post today I have a notification from Andre Jansen at Kings of a provisional admission date on 10th December for my transplant. Having learned what I have today about my chest problems, I wonder if this is yet another unlikely target date.
Monday 12th to Thursday 15th November 2007
I am into my third week of Ambisome treatment. There is some confusion over the dosage today due to some bad handwriting(!) but Santa is able to sort it out. I have my usual Monday Hickman line “care”, blood tests and then see Tim Corbett in his clinic. My chest is still the main topic of conversation. I am to have a CT scan tomorrow and another bronchoscopy on Friday - deep joy! I still have bits of rash on my chest and arms, so there is something still causing an allergic reaction. There are no conclusions on that, but perhaps it could be the Ambisome? My weight today is 75 kgs and my blood results are - Wbc: 5.8; Neuts: 3.9; Lymph: 1.2; Hbn: 10.4; PLT: 65.
I check my blog on Tuesday and find I have a comment from Danny Tall, my good friend from my very first Kings experience back in February. He had the “all clear” at his last clinic, which is great news. In the afternoon I have my Ambisome in the Day Unit and then go for my CT scan. There is no time for blood tests today.
We have a lazy morning on Wednesday and then Tina and I go to Brighton together. I have my last session of Ambisome and it is decided I should move on to Voraconozole, a tablet form of anti-fungal treatment - 200mg twice daily. My blood results today are: Wbc: 6.4; Neuts:4.6; Hbn: 10.6; and PLT: 65. It is arranged that I should come back tomorrow morning for a chat with a doctor from the Chest Team about my bronchoscopy.
On Thursday I see Dr Kate Hurt from the Chest Team about tomorrow’s bronchoscopy. I am to come in later today to stay overnight, so that I can be given some platelets before the procedure. Although I am prescribed a month’s supply of Voraconozole, I am only given two weeks’ worth at the hospital pharmacy; typical! I don’t have the inclination to take issue with them about it, besides my two hours parking is about to expire! Tina brings me back to the RSCH at 6.30pm and I have a room in the Haematology Ward. Familiar territory.
I have not slept too well probably because I slept so much yesterday. I eventually get up and have a tentative breakfast of porridge. I am not feeling hungry but know I must try to eat something. We have a lazy morning and my lunch is soup and some avocado pear. I have a visit from Michel after lunch and then rest up for the remainder of the afternoon. Strangely, I have two mugs of tea. I cannot remember the last time I had tea and enjoyed it! I have a cheese omelette for dinner but cannot taste it and rest up for the evening.
I manage some porridge again on Sunday morning, starting late and go to 10.30am Mass at Keymer. We arrive late, leave early and sit at the back, behind the glass screen. This is to avoid the risk of contact with a lot of people. Matthew, Charrise and the girls come for lunch, but I am feeling rather weary by 1pm, before they have arrived, and go up for an hour’s sleep. That helps. Tina’s Spanish pork casserole is good as usual. Today’s Observer carries an article about Pseudomonas as the new “super bug” causing fatalities in hospitals alongside MRSA and C. Difficile. Not very reassuring!
Friday 16th November 2007
I am “nil by mouth” from midnight and am woken up by staff nurse Leo about 6.40am for a blood test and to set up my platelets infusion, which runs for two hours. There is some confusion as to how I should get to the Endoscopy suite, but eventually I am escorted by two porters and a trolley bed! I have my procedure semi-prone - which feels strange - as opposed to sitting upright at Kings. However everything else seems to be better and I am conscious throughout, despite the sedation. Again it is something not to be repeated in a hurry! Kate Hurt carries out the procedure with the consultant, a Dr. Jackson, looking on with two rather interested students. There is the calming presence of a nurse - Jill - at my arm giving me reassurance and using a suction instrument in my mouth. Phase two - the obtaining of mucus samples doesn’t work and it is thought the instrument is faulty. Not so - a lump of my mucus had blocked the tube! At the end I am told that they have some good samples to check for bugs. However, Dr Jackson says that my airways are dilated; I will need physio-therapy and intra-venous anti-biotics as part of a plan to set me up for my transplant. He mentions Pseudomonas as a particular issue. He will be in touch with Tim Corbett about this and the results of the examination of the samples.
I feel quite good as I am moved into the recovery room, where I rest for an hour, but with a headache coming on strong. I ask for some paracetamol but cannot be given any as I am not on my ward. As I am being pushed back to my ward I am sick, although I have not eaten since 9pm the night before. I am told it is bile and that I am probably de-hydrated. I am given paracetamol, I should drink sips of water and I have some soup for my lunch. I then rest for another two hours before Tina comes to take me home. I am feeling a bit groggy and am glad I did not have to drive myself. Ten minutes into our journey and I am sick again. This is not nice at all! We get home to find the heating off and the house freezing because of a power cut. I go straight to bed and stay there. I am feeling lousy and just sleep. I have no food but keep on with the water.
In my post today I have a notification from Andre Jansen at Kings of a provisional admission date on 10th December for my transplant. Having learned what I have today about my chest problems, I wonder if this is yet another unlikely target date.
Monday 12th to Thursday 15th November 2007
I am into my third week of Ambisome treatment. There is some confusion over the dosage today due to some bad handwriting(!) but Santa is able to sort it out. I have my usual Monday Hickman line “care”, blood tests and then see Tim Corbett in his clinic. My chest is still the main topic of conversation. I am to have a CT scan tomorrow and another bronchoscopy on Friday - deep joy! I still have bits of rash on my chest and arms, so there is something still causing an allergic reaction. There are no conclusions on that, but perhaps it could be the Ambisome? My weight today is 75 kgs and my blood results are - Wbc: 5.8; Neuts: 3.9; Lymph: 1.2; Hbn: 10.4; PLT: 65.
I check my blog on Tuesday and find I have a comment from Danny Tall, my good friend from my very first Kings experience back in February. He had the “all clear” at his last clinic, which is great news. In the afternoon I have my Ambisome in the Day Unit and then go for my CT scan. There is no time for blood tests today.
We have a lazy morning on Wednesday and then Tina and I go to Brighton together. I have my last session of Ambisome and it is decided I should move on to Voraconozole, a tablet form of anti-fungal treatment - 200mg twice daily. My blood results today are: Wbc: 6.4; Neuts:4.6; Hbn: 10.6; and PLT: 65. It is arranged that I should come back tomorrow morning for a chat with a doctor from the Chest Team about my bronchoscopy.
On Thursday I see Dr Kate Hurt from the Chest Team about tomorrow’s bronchoscopy. I am to come in later today to stay overnight, so that I can be given some platelets before the procedure. Although I am prescribed a month’s supply of Voraconozole, I am only given two weeks’ worth at the hospital pharmacy; typical! I don’t have the inclination to take issue with them about it, besides my two hours parking is about to expire! Tina brings me back to the RSCH at 6.30pm and I have a room in the Haematology Ward. Familiar territory.
Tuesday 13 November 2007
A Second Week of Anti-Fungal Treatment
Monday 5th to Sunday 11th November 2007
I have another complete week of Ambisome intra-venous anti-fungal treatment. At his Monday clinic Tim Corbett puts me on GCSF on alternate days as he wants to keep my neutrophils above 2.0 during this current treatment regime and today they are only 1.2. My allergy rash continues annoyingly through the week, despite the anti-histamine tablets. I remain around 75 kgs all week, despite all efforts to put on a bit of weight. My neutrophils range between 2.2 and 3.9 with the alternate days of GCSF. My haemoglobin and platelets average 10.5 and 60 through the week. I am generally tired and have about two hours sleep most afternoons or evenings. Despite that we call in for tea and birthday cake on Mia’s third birthday on Thursday, have a pub lunch on Wednesday and I have a pint of Harveys in the New Inn on Friday. We also visit Terry and Les for tea on Saturday afternoon. Otherwise it is a quiet and uneventful week.
I have another complete week of Ambisome intra-venous anti-fungal treatment. At his Monday clinic Tim Corbett puts me on GCSF on alternate days as he wants to keep my neutrophils above 2.0 during this current treatment regime and today they are only 1.2. My allergy rash continues annoyingly through the week, despite the anti-histamine tablets. I remain around 75 kgs all week, despite all efforts to put on a bit of weight. My neutrophils range between 2.2 and 3.9 with the alternate days of GCSF. My haemoglobin and platelets average 10.5 and 60 through the week. I am generally tired and have about two hours sleep most afternoons or evenings. Despite that we call in for tea and birthday cake on Mia’s third birthday on Thursday, have a pub lunch on Wednesday and I have a pint of Harveys in the New Inn on Friday. We also visit Terry and Les for tea on Saturday afternoon. Otherwise it is a quiet and uneventful week.
Tuesday 6 November 2007
A Week of Anti-Fungal Treatment
Monday 29th to Sunday 4th November 2007
I am feeling much better now. Although I still have a lot of nasty coloured catarrh, my cough is getting minimal. On Monday I have my Ambisome and then have a wait for Tim Corbett’s weekly clinic. He is quite pleased with my chest, although there is still a bit of a rattle down there. The fungal infection I have is called Aspergillus. From what I have read there are lots of different types. At least I know the name. He thinks I will have to have two, possibly three weeks of Ambisome. The good news, however, is that I am to come off the Itroconozole (yippeeeee!) as it clearly is no longer the effective anti-fungal it should be and the Ambisome has temporarily taken its place. He will put me on the tablet Voraconazole after we stop the Ambisome. This is the other drug in the clinical trial I signed up to recently to go along with my transplant. It looks like the decision on what drug I will Have has now been made! My blood results today are - Wbc: 2.7; Neuts: 1.2; Lymph: 1.0; Hbn: 11.1; and PLT: 72. My weight today is 74.8 kgs. I have a GCSF injection when I get home.
The rest of the week follows much the same pattern; daily Ambisome, driving myself down to hospital, except when Tina comes down with me on Wednesday and Jim does the honours on Friday so that Tina could have the car. My neutrophils go from 4.5 on Tuesday - after the GCSF - down to 1.0 on Friday. The GCSF takes them back to 3.3 on Saturday and 2.3 on Sunday. My weight fluctuates between 74.6 and 76 kgs - for reasons I cannot understand! - ending on Sunday with 75.8 kgs. I am feeling drowsy every day and most days I have two or three hours sleep in the afternoon or evening. Perhaps it is the Ambisome or - more likely - the anti-histamine tablets, Hydroxycine Hydrochloride.
We go to Matthews for some supper on Tuesday and have Stephen and Sue for dinner on Saturday night. It is such a shame my appetite is so small and I am still unable to enjoy a glass of wine, although the champagne was good!
I have been finding that the three ends of my Hickman line are a real nuisance. The square ends are quite sharp and stick into my skin. This is particularly irritating as the skin on my chest and stomach areas is already very sensitive with the rash. So I have shaved the corners smooth with a nail file and - hey presto - no more irritation! Now that is a good Hickman line tip for any readers!
I am feeling much better now. Although I still have a lot of nasty coloured catarrh, my cough is getting minimal. On Monday I have my Ambisome and then have a wait for Tim Corbett’s weekly clinic. He is quite pleased with my chest, although there is still a bit of a rattle down there. The fungal infection I have is called Aspergillus. From what I have read there are lots of different types. At least I know the name. He thinks I will have to have two, possibly three weeks of Ambisome. The good news, however, is that I am to come off the Itroconozole (yippeeeee!) as it clearly is no longer the effective anti-fungal it should be and the Ambisome has temporarily taken its place. He will put me on the tablet Voraconazole after we stop the Ambisome. This is the other drug in the clinical trial I signed up to recently to go along with my transplant. It looks like the decision on what drug I will Have has now been made! My blood results today are - Wbc: 2.7; Neuts: 1.2; Lymph: 1.0; Hbn: 11.1; and PLT: 72. My weight today is 74.8 kgs. I have a GCSF injection when I get home.
The rest of the week follows much the same pattern; daily Ambisome, driving myself down to hospital, except when Tina comes down with me on Wednesday and Jim does the honours on Friday so that Tina could have the car. My neutrophils go from 4.5 on Tuesday - after the GCSF - down to 1.0 on Friday. The GCSF takes them back to 3.3 on Saturday and 2.3 on Sunday. My weight fluctuates between 74.6 and 76 kgs - for reasons I cannot understand! - ending on Sunday with 75.8 kgs. I am feeling drowsy every day and most days I have two or three hours sleep in the afternoon or evening. Perhaps it is the Ambisome or - more likely - the anti-histamine tablets, Hydroxycine Hydrochloride.
We go to Matthews for some supper on Tuesday and have Stephen and Sue for dinner on Saturday night. It is such a shame my appetite is so small and I am still unable to enjoy a glass of wine, although the champagne was good!
I have been finding that the three ends of my Hickman line are a real nuisance. The square ends are quite sharp and stick into my skin. This is particularly irritating as the skin on my chest and stomach areas is already very sensitive with the rash. So I have shaved the corners smooth with a nail file and - hey presto - no more irritation! Now that is a good Hickman line tip for any readers!
Monday 5 November 2007
A Bronchoscopy Finds a Fungal Infection
Monday 22nd to Sunday 28th October 2007
I am down to the RSCH for Tim Corbett’s Monday clinic. My weight has gone up 1.6 kgs in the week to 75.4. My blood results are - Wbc: 2.6; Neuts: 0.8; Hbn: 11.6; and PLT: 73. As a consequence I give myself a dose of GCSF this evening. I still have a bit of a rattle in my chest. Tim has a look at my allergic rash, which has now spread from chest to shoulders, stomach, arms, neck and head - and is very itchy. He prescribes me two weeks of antihistamine tablets - Hydroxyzine Hydrochloride 25 mg three times daily - aware that I will be seeing a dermatologist at Kings on Tuesday or Wednesday.
On Tuesday Jim takes me up to Kings late afternoon and I am admitted a day ahead of my bronchoscopy. I renew acquaintances with several of the nursing staff from my past stays in Davidson Ward and the Derek Mitchell Unit - which is nice. I am seen by one of the haematology doctors and later by a chest consultant, who runs through what will happen tomorrow. Sounds pretty gruesome! I must have nil by mouth from midnight.
I am woken at 4.30am for a belated blood sample. Whilst I do not have any breakfast, I have some confused conversations about whether I can take my Itroconazole - I leave it - and how much water I can drink to take my tablets! I go for my bronchoscopy - or bronchiole alveolar lavage - at 10.30am, before which I am given 213 mls of platelets. They are a strange yellow colour, much like National Health orange juice used to look - but not to be confused! I sign away for the procedure having been assured that it will be uncomfortable and, despite the anaesthetic and sedative, so it turns out. In fact it is a most uncomfortable 15 minutes and not to repeated if I can help it! I have a tube inserted up my nose, down my throat and into one of my bronchi. A saline solution is used to flush the bronchioles and then suck up whatever is down there. Afterwards I see some nasty looking specimen jars lurking nearby, but I am too dozy to ask about them. I don’t remember how I got back to the ward. I slept for the next two hours. Whilst I am in a dazed state I am seen by two dermatologists about my rash. I don’t realise just how dazed I am until I try to remember afterwards what is said. They tell me that they will prescribe two different creams, a moisturiser called Doublebase and a steroid-based ointment called Eumovate, but I have no idea - or have forgotten - how they should best be applied, etc.
Tina is outside the hospital at 3.35pm but I am still waiting for the pharmacy - as usual. We get away 15 minutes later. My blood results today are - Wbc: 3.71; Neuts: 2.4; Hbn: 11.2; and
PLT: 66. We struggle a bit to work out the best way to put on my creams, ie before or after washing or showering, which one first, what, if any, intervals, etc.
Late Thursday afternoon I get a call from Kings telling me that they have found a fungal infection from my bronchoscopy. Arrangements are made for me to have a daily one hour dose of the anti-fungal Ambisome intra-venously at the day unit at the RSCH starting tomorrow. Isn’t that just great! One more thing!
I am down to Brighton for a 10.30am appointment on Friday for my first infusion of Ambisome. They have to make up the bag of Ambisome themselves in the unit as it comes in a powder form and is mixed with water. Saline solutions cannot be used as it solidifies. My dosage is 228 milligrams making just under 300 mls of total solution. I am told by Vicky Tindall that I will have daily blood tests as they need to monitor my white cells, kidney function and a number of nutrient levels. Ambisome can affect these and, if so, they would then have to change me on to another drug. I am finding that putting Eumovate on the rash area around my Hickman line entry point stops my putting plasters there as the plasters do not stick! I am told that as my line has set very well at its point of entry then I do not really need a plaster, other than to keep the three access “tassels” from dangling down too far or being tugged. So I can certainly manage for the time being without a plaster. My weight today is 75.6 kgs. My bloods results are - Wbc: 2.8; Neuts: 1.3; Lymph: 1.0; Hbn: 11.0; PLT: 74. As it is considered best to keep my Neutrophils above 2.0 while I am on this anti-fungal, I am given a dose of GCSF to self administer later today.
With the Day Unit closed for the weekend, I go to the Haematology Ward for my treatments. I see Paul Hill briefly on both days. He explains to me that both the fungal and bacterial chest infections I have are sitting latent in the body and have been activated in my case because of my low immune system. In other words I did not pick them up from a dodgy air conditioning system at Kings! My weight has gone down to 75.2 kgs. We have Tony and Pam for a much postponed lunch on Sunday - which was nice. I am still not enjoying wine. I sleep for two hours in the evening. My blood results today are - Wbc: 3.4; Neuts: 1.3; Lymph: 1.5; Hbn: 11.1; and PLT: 72.
I am down to the RSCH for Tim Corbett’s Monday clinic. My weight has gone up 1.6 kgs in the week to 75.4. My blood results are - Wbc: 2.6; Neuts: 0.8; Hbn: 11.6; and PLT: 73. As a consequence I give myself a dose of GCSF this evening. I still have a bit of a rattle in my chest. Tim has a look at my allergic rash, which has now spread from chest to shoulders, stomach, arms, neck and head - and is very itchy. He prescribes me two weeks of antihistamine tablets - Hydroxyzine Hydrochloride 25 mg three times daily - aware that I will be seeing a dermatologist at Kings on Tuesday or Wednesday.
On Tuesday Jim takes me up to Kings late afternoon and I am admitted a day ahead of my bronchoscopy. I renew acquaintances with several of the nursing staff from my past stays in Davidson Ward and the Derek Mitchell Unit - which is nice. I am seen by one of the haematology doctors and later by a chest consultant, who runs through what will happen tomorrow. Sounds pretty gruesome! I must have nil by mouth from midnight.
I am woken at 4.30am for a belated blood sample. Whilst I do not have any breakfast, I have some confused conversations about whether I can take my Itroconazole - I leave it - and how much water I can drink to take my tablets! I go for my bronchoscopy - or bronchiole alveolar lavage - at 10.30am, before which I am given 213 mls of platelets. They are a strange yellow colour, much like National Health orange juice used to look - but not to be confused! I sign away for the procedure having been assured that it will be uncomfortable and, despite the anaesthetic and sedative, so it turns out. In fact it is a most uncomfortable 15 minutes and not to repeated if I can help it! I have a tube inserted up my nose, down my throat and into one of my bronchi. A saline solution is used to flush the bronchioles and then suck up whatever is down there. Afterwards I see some nasty looking specimen jars lurking nearby, but I am too dozy to ask about them. I don’t remember how I got back to the ward. I slept for the next two hours. Whilst I am in a dazed state I am seen by two dermatologists about my rash. I don’t realise just how dazed I am until I try to remember afterwards what is said. They tell me that they will prescribe two different creams, a moisturiser called Doublebase and a steroid-based ointment called Eumovate, but I have no idea - or have forgotten - how they should best be applied, etc.
Tina is outside the hospital at 3.35pm but I am still waiting for the pharmacy - as usual. We get away 15 minutes later. My blood results today are - Wbc: 3.71; Neuts: 2.4; Hbn: 11.2; and
PLT: 66. We struggle a bit to work out the best way to put on my creams, ie before or after washing or showering, which one first, what, if any, intervals, etc.
Late Thursday afternoon I get a call from Kings telling me that they have found a fungal infection from my bronchoscopy. Arrangements are made for me to have a daily one hour dose of the anti-fungal Ambisome intra-venously at the day unit at the RSCH starting tomorrow. Isn’t that just great! One more thing!
I am down to Brighton for a 10.30am appointment on Friday for my first infusion of Ambisome. They have to make up the bag of Ambisome themselves in the unit as it comes in a powder form and is mixed with water. Saline solutions cannot be used as it solidifies. My dosage is 228 milligrams making just under 300 mls of total solution. I am told by Vicky Tindall that I will have daily blood tests as they need to monitor my white cells, kidney function and a number of nutrient levels. Ambisome can affect these and, if so, they would then have to change me on to another drug. I am finding that putting Eumovate on the rash area around my Hickman line entry point stops my putting plasters there as the plasters do not stick! I am told that as my line has set very well at its point of entry then I do not really need a plaster, other than to keep the three access “tassels” from dangling down too far or being tugged. So I can certainly manage for the time being without a plaster. My weight today is 75.6 kgs. My bloods results are - Wbc: 2.8; Neuts: 1.3; Lymph: 1.0; Hbn: 11.0; PLT: 74. As it is considered best to keep my Neutrophils above 2.0 while I am on this anti-fungal, I am given a dose of GCSF to self administer later today.
With the Day Unit closed for the weekend, I go to the Haematology Ward for my treatments. I see Paul Hill briefly on both days. He explains to me that both the fungal and bacterial chest infections I have are sitting latent in the body and have been activated in my case because of my low immune system. In other words I did not pick them up from a dodgy air conditioning system at Kings! My weight has gone down to 75.2 kgs. We have Tony and Pam for a much postponed lunch on Sunday - which was nice. I am still not enjoying wine. I sleep for two hours in the evening. My blood results today are - Wbc: 3.4; Neuts: 1.3; Lymph: 1.5; Hbn: 11.1; and PLT: 72.
Tuesday 23 October 2007
My New Admission Date is Set and then Put Back
Monday 15th to Sunday 21st October 2007
I have a blood test and attend Tim Corbett’s transplant clinic on Monday. This is a new clinic in which he sees pre- and post- transplant patients. Seems like a very good idea. Santa changes the Tegaderm dressing on my Hickman line to Mepore, because of my considerable allergic reaction. We conclude that my chest infection is getting better, but it will need checking in a week’s time. My weight today is down from last week at 73.8 kgs and my blood results are -Wbc: 2.6; Neuts: 1.1; Hbn: 11.7; PLT 87 and CRP: 5. Consequently I do myself a GCSF this evening. I am back to Brighton on Tuesday for my Pentamidine nebulizer.
I call Andre on Wednesday for the latest on my transplant. He tells me I should be admitted on 30th October, confirms that my no. 2 donor is lined up for “harvesting” and that my transplant date should be 8th November. Dr Devereux wants to see me this Friday and I will see the transplant team as well. I have an afternoon sleep for the first time in several days. Wednesday and Thursday are virtually “non days”. I am still sleeping quite a bit.
I see Steve Devereux at Kings on Friday morning after having my blood samples taken in the Day Room using my Hickman line. It is extremely busy there today. The consultation concentrates on my continuing chest infection as there is no way I will be going into a transplant procedure with it. The CT scan showed no sign of CLL and conjestion in the sinuses, but I really cannot remember what he said about down in my lungs, other than describing my bronchiole as a “tree in bud”. He wants me to come back early next week for a Bronchiole Alveolar Lavage (BAL) whereby they flush the farthest ends of the bronchioles to get out any nasty bits for examination. It may be that the Pseudomonas is just persisting - I am to continue with Ciprofloxacin for another two weeks - or there is another yet unidentified bug down there. He also wants to ensure that the infection is viral and not fungal. The procedure will be under anaesthetic with a sedative, so I will have to stay in one night. I later hear that this is lined up for Tuesday and Wednesday. I am asked to give a sputum sample, but I don’t think it was a very good one! Because of all this my transplant is put back another two weeks. I also point out that my apparent allergic reaction to the plasters has become a wider spread rash on my chest. I am to be seen by a dermatologist next week.
We have a busy weekend with Anna, Nick and Eva here Thursday and Friday nights and Linda and Paul, Friday through to Sunday. My taste buds are still a bit all over the place. I enjoy my beer and sandwich at the Royal Oak and discover that I am the only one of us who actually likes Fortisips! I have concluded that the great taste suppressant is most definitely the Itroconazole, as eating a lunchtime is far more pleasurable than breakfast or dinner. The weekend is spoiled by England’s losing in the Rugby World Cup Final and Lewis Hamilton’s failing to win the F1 Racing Championship in his first year.
I have a blood test and attend Tim Corbett’s transplant clinic on Monday. This is a new clinic in which he sees pre- and post- transplant patients. Seems like a very good idea. Santa changes the Tegaderm dressing on my Hickman line to Mepore, because of my considerable allergic reaction. We conclude that my chest infection is getting better, but it will need checking in a week’s time. My weight today is down from last week at 73.8 kgs and my blood results are -Wbc: 2.6; Neuts: 1.1; Hbn: 11.7; PLT 87 and CRP: 5. Consequently I do myself a GCSF this evening. I am back to Brighton on Tuesday for my Pentamidine nebulizer.
I call Andre on Wednesday for the latest on my transplant. He tells me I should be admitted on 30th October, confirms that my no. 2 donor is lined up for “harvesting” and that my transplant date should be 8th November. Dr Devereux wants to see me this Friday and I will see the transplant team as well. I have an afternoon sleep for the first time in several days. Wednesday and Thursday are virtually “non days”. I am still sleeping quite a bit.
I see Steve Devereux at Kings on Friday morning after having my blood samples taken in the Day Room using my Hickman line. It is extremely busy there today. The consultation concentrates on my continuing chest infection as there is no way I will be going into a transplant procedure with it. The CT scan showed no sign of CLL and conjestion in the sinuses, but I really cannot remember what he said about down in my lungs, other than describing my bronchiole as a “tree in bud”. He wants me to come back early next week for a Bronchiole Alveolar Lavage (BAL) whereby they flush the farthest ends of the bronchioles to get out any nasty bits for examination. It may be that the Pseudomonas is just persisting - I am to continue with Ciprofloxacin for another two weeks - or there is another yet unidentified bug down there. He also wants to ensure that the infection is viral and not fungal. The procedure will be under anaesthetic with a sedative, so I will have to stay in one night. I later hear that this is lined up for Tuesday and Wednesday. I am asked to give a sputum sample, but I don’t think it was a very good one! Because of all this my transplant is put back another two weeks. I also point out that my apparent allergic reaction to the plasters has become a wider spread rash on my chest. I am to be seen by a dermatologist next week.
We have a busy weekend with Anna, Nick and Eva here Thursday and Friday nights and Linda and Paul, Friday through to Sunday. My taste buds are still a bit all over the place. I enjoy my beer and sandwich at the Royal Oak and discover that I am the only one of us who actually likes Fortisips! I have concluded that the great taste suppressant is most definitely the Itroconazole, as eating a lunchtime is far more pleasurable than breakfast or dinner. The weekend is spoiled by England’s losing in the Rugby World Cup Final and Lewis Hamilton’s failing to win the F1 Racing Championship in his first year.
Tuesday 16 October 2007
At Last my Chest Infection is Gradually Going
Monday 8th to Sunday 14th October 2007
I have a 10am appointment at the RSCH for my blood tests and a check of my Hickman Line on Monday. I wait quite a long time for the doctors to check me over and have to go out to move my car! Ros Johnston saw me with Dr. Marta. She increases my Ciprofloxacin to 14 days, adding that Pseudomonas is an awkward bug and, if things are not better by 7 to 10 days, I might have to come in for i/v anti-biotics. I hope that is not necessary as I have had enough of hospitals! - 12 weeks in 7 months is plenty for anyone! My weight today is down a bit to 74.4 kgs and my blood results are - Wbc: 2.5; Neuts: 1.0; Lymph: 1.2; Hbn: 11.9; PLT: 99; and CRP: <5. So I resume with GCSF just for today and await Thursday’s test. I am slightly surprised with my CRP reading as I would have thought it would be much higher, with the infection my body is having to deal with. I have decided to resume the daily Furosimide tablet as my legs appeared to thicken over the weekend. I manage to get through today without an afternoon sleep.
I spend Tuesday on paperwork and the computer, but get a nice surprise telephone call from my old friend Digby - from my 1970s detective days. We chew the fat; it was good. I have a bit of a sleep in the afternoon. I am coughing slightly less each day, it seems, but my appetite is no bigger. I am trying to keep up having Fortisips regularly, but it often slips.
Tina and I take rubbish to the tip and then go shopping in Burgess Hill, Wednesday morning. I have an hour’s sleep before lunch and then another hour plus afterwards. I don’t get much done today!
I have an 11.30am appointment in the RSCH Day Unit today, Thursday. I have the stitch removed from the line entry position and a new dressing. I have a rash on my chest. I think it is the Tegaderm dressing as it is quite itchy there, but Jason suggests not. I will give it a few days. My chest is checked out by Natalie, a trainee doctor. She is very pleased with it. Each day is getting slightly better. My weight today is 74.6 kgs and my blood results are - Wbc: 4.0; Neuts: 2.5; Lymph: 1.1; Hbn: 10.7; and PLT: 91.
On Friday I give Andre Jansen a call at Kings to check on progress with my no. 2 donor. He will get back to me on Monday, but meanwhile he books me to go up for a pre-transplant clinic on Thursday 18 October. Otherwise I have a quiet day catching up on things like our Christmas card lists, etc.
I get my ‘flu jab at Hassocks on Saturday morning, followed by some shopping in Burgess Hill. It is a sporting day with England football on TV in the afternoon and World Cup rugby on TV in the evening, the latter watched at Matthew’s along with his home cooked chicken curry - delicious, but more than I can eat. I just wish my taste buds were better. I am still piling on the salt to give anything flavour.
A nice easy start to Sunday with Mass at 10.30am. I find out that Annie’s daughter Holly will be having her kidney transplant about the same time as I have mine. We have a beer and sandwich lunch at the Royal Oak, followed by a dozy afternoon and another rugby watching evening.
I have a 10am appointment at the RSCH for my blood tests and a check of my Hickman Line on Monday. I wait quite a long time for the doctors to check me over and have to go out to move my car! Ros Johnston saw me with Dr. Marta. She increases my Ciprofloxacin to 14 days, adding that Pseudomonas is an awkward bug and, if things are not better by 7 to 10 days, I might have to come in for i/v anti-biotics. I hope that is not necessary as I have had enough of hospitals! - 12 weeks in 7 months is plenty for anyone! My weight today is down a bit to 74.4 kgs and my blood results are - Wbc: 2.5; Neuts: 1.0; Lymph: 1.2; Hbn: 11.9; PLT: 99; and CRP: <5. So I resume with GCSF just for today and await Thursday’s test. I am slightly surprised with my CRP reading as I would have thought it would be much higher, with the infection my body is having to deal with. I have decided to resume the daily Furosimide tablet as my legs appeared to thicken over the weekend. I manage to get through today without an afternoon sleep.
I spend Tuesday on paperwork and the computer, but get a nice surprise telephone call from my old friend Digby - from my 1970s detective days. We chew the fat; it was good. I have a bit of a sleep in the afternoon. I am coughing slightly less each day, it seems, but my appetite is no bigger. I am trying to keep up having Fortisips regularly, but it often slips.
Tina and I take rubbish to the tip and then go shopping in Burgess Hill, Wednesday morning. I have an hour’s sleep before lunch and then another hour plus afterwards. I don’t get much done today!
I have an 11.30am appointment in the RSCH Day Unit today, Thursday. I have the stitch removed from the line entry position and a new dressing. I have a rash on my chest. I think it is the Tegaderm dressing as it is quite itchy there, but Jason suggests not. I will give it a few days. My chest is checked out by Natalie, a trainee doctor. She is very pleased with it. Each day is getting slightly better. My weight today is 74.6 kgs and my blood results are - Wbc: 4.0; Neuts: 2.5; Lymph: 1.1; Hbn: 10.7; and PLT: 91.
On Friday I give Andre Jansen a call at Kings to check on progress with my no. 2 donor. He will get back to me on Monday, but meanwhile he books me to go up for a pre-transplant clinic on Thursday 18 October. Otherwise I have a quiet day catching up on things like our Christmas card lists, etc.
I get my ‘flu jab at Hassocks on Saturday morning, followed by some shopping in Burgess Hill. It is a sporting day with England football on TV in the afternoon and World Cup rugby on TV in the evening, the latter watched at Matthew’s along with his home cooked chicken curry - delicious, but more than I can eat. I just wish my taste buds were better. I am still piling on the salt to give anything flavour.
A nice easy start to Sunday with Mass at 10.30am. I find out that Annie’s daughter Holly will be having her kidney transplant about the same time as I have mine. We have a beer and sandwich lunch at the Royal Oak, followed by a dozy afternoon and another rugby watching evening.
Monday 8 October 2007
My Chest Infection Bug is Identified
Monday 1st to Sunday 7th October 2007
To the RSCH on Monday morning for my blood test, with Tina driving as I still do not feel comfortable driving. The top stitch on my Hickman Line was taken out, the line flushed and the dressing changed. Ros Johnston checked my chest and sent me for an x-ray with the probability they would arrange for me to have a CT scan as well, including my sinuses. I am to go back on Wednesday so they can check progress. My blood results today are - Wbc: 3.9; Neuts: 2.6; Lymph: 0.9; Hbn: 10.6; PLT: 103. My weight today is 75.2 kgs.
I am sleeping most afternoons for at least a couple of hours, but on Tuesday I sleep a total of between four and five hours either side of lunch. This is remarkable as I am also sleeping well at night.
Back for another check up and blood tests at the RSCH on Wednesday. My neutrophils are down to 1.8 today. I find that I have an allergic reaction to the transparent plaster - IV 3000 - holding my Hickman Line and this is replaced with Tegaderm. I hope that is ok. The CT scan has been requested but it may take a couple of weeks before I get it.
Jim Rodgers calls round on Thursday morning for coffee and a chat. We then have a walk up the High Street for some fresh air and find ourselves having a pint of Harveys in the New Inn. I can taste the beer! Before that I call Judith, Dr. Steve Devereux’s secretary, and am able to get a slot at the end of his clinic tomorrow as I am concerned about my cough, my tiredness and my loss of appetite, bearing in mind my oncoming transplant.
I drive to Kings on Friday for my pre-transplant session. (Tina drives home but gets the worst of the deal!) No one from the team is available when we arrive, but I eventually get some clarity about what blood samples are needed. I set the cat among the pigeons at the bloods room as they have no prior notice of the request, but the receptionist is as efficient as ever and soon sort things out. The funny thing is they are not trained to make use of Hickman Lines, so it is back to my arm. I am seen by Steve Devereux about 12.30pm. He is very attentive to my chest cough - upper respiratory tract infection actually - as this needs to be sorted out before going into the transplant procedure. He gets me a CT scan today on my sinuses - and full body for staging purposes. That’s much better than waiting two weeks or so! He is sympathetic to my appetite loss issues and takes me off Corsodyl and Nystatin (hurray!) but keeps me on Itroconozole (ugh!). He suggests I stop the Furosimide as well. He also explains that my tiredness is natural considering the heavy chemotherapy regime I have been on, the nasty chest cough, the medications and hospitalisations I have had over recent months. He does not need me to see Mansour or any of the team as it is only three weeks since the last time and the priority is to get my chest sorted out. I have a provisional appointment to see him again in two weeks. We leave much heartened and reassured by this session.
On our way home I get a call from Jason in the RSCH day unit telling me that the laboratory has found a bug in my last sputum sample and that it is sensitive to Ciprofloxacin. So we go straight down to Brighton, collect the prescription and call into Asda to get it dispensed. I am later told that the bug is Pseudomonas, one which is quite regularly found but specific to people who are immune suppressed.
I am catching up on my diaries of our breaks away this year and have two of them done by Sunday. Saturday and Sunday are Rugby World Cup quarter finals days - a good excuse to keep my feet up and ease my water retention problems! England confound the critics. Australia and New Zealand are both sent home early! We walk up the village on Saturday afternoon as Tina wanted to see the plot I have bought in the cemetery. She likes the position - it is facing west, against the old cemetery wall below a very healthy looking holly tree. I am very pleased this has worked out so well. On Sunday I have a late afternoon nap. Our dinners this weekend have been fillet steaks and pork fillets. They are tasty, but I am still off wine - unfortunately! Whilst I am still having coughing sessions, I think things are getting slightly better.
To the RSCH on Monday morning for my blood test, with Tina driving as I still do not feel comfortable driving. The top stitch on my Hickman Line was taken out, the line flushed and the dressing changed. Ros Johnston checked my chest and sent me for an x-ray with the probability they would arrange for me to have a CT scan as well, including my sinuses. I am to go back on Wednesday so they can check progress. My blood results today are - Wbc: 3.9; Neuts: 2.6; Lymph: 0.9; Hbn: 10.6; PLT: 103. My weight today is 75.2 kgs.
I am sleeping most afternoons for at least a couple of hours, but on Tuesday I sleep a total of between four and five hours either side of lunch. This is remarkable as I am also sleeping well at night.
Back for another check up and blood tests at the RSCH on Wednesday. My neutrophils are down to 1.8 today. I find that I have an allergic reaction to the transparent plaster - IV 3000 - holding my Hickman Line and this is replaced with Tegaderm. I hope that is ok. The CT scan has been requested but it may take a couple of weeks before I get it.
Jim Rodgers calls round on Thursday morning for coffee and a chat. We then have a walk up the High Street for some fresh air and find ourselves having a pint of Harveys in the New Inn. I can taste the beer! Before that I call Judith, Dr. Steve Devereux’s secretary, and am able to get a slot at the end of his clinic tomorrow as I am concerned about my cough, my tiredness and my loss of appetite, bearing in mind my oncoming transplant.
I drive to Kings on Friday for my pre-transplant session. (Tina drives home but gets the worst of the deal!) No one from the team is available when we arrive, but I eventually get some clarity about what blood samples are needed. I set the cat among the pigeons at the bloods room as they have no prior notice of the request, but the receptionist is as efficient as ever and soon sort things out. The funny thing is they are not trained to make use of Hickman Lines, so it is back to my arm. I am seen by Steve Devereux about 12.30pm. He is very attentive to my chest cough - upper respiratory tract infection actually - as this needs to be sorted out before going into the transplant procedure. He gets me a CT scan today on my sinuses - and full body for staging purposes. That’s much better than waiting two weeks or so! He is sympathetic to my appetite loss issues and takes me off Corsodyl and Nystatin (hurray!) but keeps me on Itroconozole (ugh!). He suggests I stop the Furosimide as well. He also explains that my tiredness is natural considering the heavy chemotherapy regime I have been on, the nasty chest cough, the medications and hospitalisations I have had over recent months. He does not need me to see Mansour or any of the team as it is only three weeks since the last time and the priority is to get my chest sorted out. I have a provisional appointment to see him again in two weeks. We leave much heartened and reassured by this session.
On our way home I get a call from Jason in the RSCH day unit telling me that the laboratory has found a bug in my last sputum sample and that it is sensitive to Ciprofloxacin. So we go straight down to Brighton, collect the prescription and call into Asda to get it dispensed. I am later told that the bug is Pseudomonas, one which is quite regularly found but specific to people who are immune suppressed.
I am catching up on my diaries of our breaks away this year and have two of them done by Sunday. Saturday and Sunday are Rugby World Cup quarter finals days - a good excuse to keep my feet up and ease my water retention problems! England confound the critics. Australia and New Zealand are both sent home early! We walk up the village on Saturday afternoon as Tina wanted to see the plot I have bought in the cemetery. She likes the position - it is facing west, against the old cemetery wall below a very healthy looking holly tree. I am very pleased this has worked out so well. On Sunday I have a late afternoon nap. Our dinners this weekend have been fillet steaks and pork fillets. They are tasty, but I am still off wine - unfortunately! Whilst I am still having coughing sessions, I think things are getting slightly better.
Sunday 30 September 2007
Getting Used to Being at Home
Tuesday 25th to Sunday 30th September 2007
I am back to the RSCH on Tuesday at short notice for my regular blood tests instead of going up to Kings for my transplant. My weight is once more 75.8 kgs and my neutrophils have responded extremely well in recent days. My results are - Wbc: 12.2; Neuts: 10.7; Lymph: 0.9; Hbn: 10.7; PLT: 98; and CRP: 12. I have been feeling very weary lately, perhaps the effects of my constant coughing on top of the fitting of my line. I have two-plus hours sleep this afternoon.
On Wednesday, while Tina does the shopping, I continue with my tax returns, interrupted by constant coughing sessions. I have three hours sleep in the afternoon. Thursday is another non day, with another two hours in the morning taken up by coughing. I am getting very cheesed off with this!
On Friday I am back to the RSCH for a blood test and a check on my Hickman line dressings. I now have a transparent dressing for the main entry position. The discomfort has eased somewhat from last weekend, but the area is sill quite tender. My coughing continues to dominate my mornings and I will see a doctor on Monday if things have not improved. My weight today is down a bit at 75.2 kgs. My blood results are - Wbc: 4.2; Neuts: 2.3; Lymph: 1.5; Hbn: 11.0; PLT: 118; and CRP: 12. Laura advises that I do not need to resume GCSF unless my counts drop further by Monday.
I spend both Saturday and Sunday very quietly. My cough and catarrh are still making me feel most uncomfortable and I still have a perpetually medicinal taste in my mouth. Sadly, my appetite seems to have gone. I don’t even feel like going out to the Royal Oak for a beer and sandwich lunch! This must change! Quite how I am not sure, but it must!
I am back to the RSCH on Tuesday at short notice for my regular blood tests instead of going up to Kings for my transplant. My weight is once more 75.8 kgs and my neutrophils have responded extremely well in recent days. My results are - Wbc: 12.2; Neuts: 10.7; Lymph: 0.9; Hbn: 10.7; PLT: 98; and CRP: 12. I have been feeling very weary lately, perhaps the effects of my constant coughing on top of the fitting of my line. I have two-plus hours sleep this afternoon.
On Wednesday, while Tina does the shopping, I continue with my tax returns, interrupted by constant coughing sessions. I have three hours sleep in the afternoon. Thursday is another non day, with another two hours in the morning taken up by coughing. I am getting very cheesed off with this!
On Friday I am back to the RSCH for a blood test and a check on my Hickman line dressings. I now have a transparent dressing for the main entry position. The discomfort has eased somewhat from last weekend, but the area is sill quite tender. My coughing continues to dominate my mornings and I will see a doctor on Monday if things have not improved. My weight today is down a bit at 75.2 kgs. My blood results are - Wbc: 4.2; Neuts: 2.3; Lymph: 1.5; Hbn: 11.0; PLT: 118; and CRP: 12. Laura advises that I do not need to resume GCSF unless my counts drop further by Monday.
I spend both Saturday and Sunday very quietly. My cough and catarrh are still making me feel most uncomfortable and I still have a perpetually medicinal taste in my mouth. Sadly, my appetite seems to have gone. I don’t even feel like going out to the Royal Oak for a beer and sandwich lunch! This must change! Quite how I am not sure, but it must!
Saturday 29 September 2007
My Donor Pulls Out
Monday 24th September 2007
I get a call from Andre that my no.1 donor has pulled out - reasons undisclosed - so they are now making contact made with the no.2 prospective donor. This will obviously include a number of checks etc. and I have a provisional admission date of exactly 4 weeks later than the original i.e. Tuesday 23 October.
Oddly enough I am very relaxed about this, mainly because I knew there was a back-up. Hopefully he/she won't do the same! I am also rather pleased things have been put back as I still have this very nasty chesty cough and cold which I picked it up in Kings and which has been with me for over 4 weeks. Added to that, my Hickman Line is still rather painful - not helped by all my coughing I am sure! So the chances were that I would have insisted on a delay anyway in order to get my cough and cold sorted out before starting the 8 days of rather exacting chemotherapy I am told I must have. Well it also gives me time to do the many things I had intended doing before going in for the transplant - and which I had not found the time to do. This includes my tax return!! - which I have just started to work on today.
Tina is not quite as relaxed about things as I am, but agrees it would have been necessary to put back the transplant because of my cough and cold. She is more comfortable now we have a new date - albeit provisional - for my admission. We are having a couple of days with Anna, Nick and Eva passing through en route to Slovakia on their latest assignment. They will be away for about 3 weeks, which sounds like quite good timing.
I get a call from Andre that my no.1 donor has pulled out - reasons undisclosed - so they are now making contact made with the no.2 prospective donor. This will obviously include a number of checks etc. and I have a provisional admission date of exactly 4 weeks later than the original i.e. Tuesday 23 October.
Oddly enough I am very relaxed about this, mainly because I knew there was a back-up. Hopefully he/she won't do the same! I am also rather pleased things have been put back as I still have this very nasty chesty cough and cold which I picked it up in Kings and which has been with me for over 4 weeks. Added to that, my Hickman Line is still rather painful - not helped by all my coughing I am sure! So the chances were that I would have insisted on a delay anyway in order to get my cough and cold sorted out before starting the 8 days of rather exacting chemotherapy I am told I must have. Well it also gives me time to do the many things I had intended doing before going in for the transplant - and which I had not found the time to do. This includes my tax return!! - which I have just started to work on today.
Tina is not quite as relaxed about things as I am, but agrees it would have been necessary to put back the transplant because of my cough and cold. She is more comfortable now we have a new date - albeit provisional - for my admission. We are having a couple of days with Anna, Nick and Eva passing through en route to Slovakia on their latest assignment. They will be away for about 3 weeks, which sounds like quite good timing.
I Get a Hickman Line
Thursday 20th to Sunday 23rd September 2007
Thursday is a day for relax and recuperation, before going down to Brighton on Friday for blood tests and the fitting of my Hickman Line. I see Tim Corbett about my chesty cough and he prescribes me Augmentin to ensure any infection is sorted out. I have a sedative to help make the Hickman line fitting a lot easier for me and it knocks me out from 12.15pm to 3pm. That’s the way to do it! I have no idea what happened and that suits me fine. I weigh in today at 75.8 kgs and my blood results are good - Wbc: 9.2; Neuts: 8.3; Lymph: 0.5; Hbn: 10.2; PLT: 113; and CRP: 10.
I am feeling the after effects of the fitting of my line by Saturday morning, with a rather bruised collar bone area and chest. This is not helped by my chesty cough seeming to be worse than before. So we call off our planned lunch with Tony and Pam at Seasalter. Tina takes me down to the RSCH where my Hickman line is cleaned and re-dressed in the Haematology Ward. She learns how to do this for me for the next few days. I then have a quiet day, watch England beat Samoa and have a good three hours sleep afterwards. Later Tina and I have a “heart - to - heart” about the impending transplant and its potential prospects. In the course of this we talk about what happens if I do not survive the procedure. We had often talked in the past about who might survive whom and about buying a burial plot in the village cemetery, but had not discussed these things since I was diagnosed. Delicate territory I suppose. I tell her that I had bought a very nice plot a couple of months ago but only wanted to mention it when it was the “right” time - whenever that might be. This was it. Although all this is difficult to talk about, we feel very close.
I am not feeling much better on Sunday - in fact my shoulder area is decidedly tender - and my cough is no better. We have Matthew, Charrise and the girls for the day. This includes my going through a number of practicalities with Matthew following our talks last evening. I have typed out a fairly comprehensive list of things “in case anything happens….” Matthew is super about it all and I know will be a source of great support to Tina should the worst actually happen. I plan to talk these things through with Anna as well when she is with us in the next couple of days. By mid afternoon I am tired out and have another three hours sleep on the bed.
Thursday is a day for relax and recuperation, before going down to Brighton on Friday for blood tests and the fitting of my Hickman Line. I see Tim Corbett about my chesty cough and he prescribes me Augmentin to ensure any infection is sorted out. I have a sedative to help make the Hickman line fitting a lot easier for me and it knocks me out from 12.15pm to 3pm. That’s the way to do it! I have no idea what happened and that suits me fine. I weigh in today at 75.8 kgs and my blood results are good - Wbc: 9.2; Neuts: 8.3; Lymph: 0.5; Hbn: 10.2; PLT: 113; and CRP: 10.
I am feeling the after effects of the fitting of my line by Saturday morning, with a rather bruised collar bone area and chest. This is not helped by my chesty cough seeming to be worse than before. So we call off our planned lunch with Tony and Pam at Seasalter. Tina takes me down to the RSCH where my Hickman line is cleaned and re-dressed in the Haematology Ward. She learns how to do this for me for the next few days. I then have a quiet day, watch England beat Samoa and have a good three hours sleep afterwards. Later Tina and I have a “heart - to - heart” about the impending transplant and its potential prospects. In the course of this we talk about what happens if I do not survive the procedure. We had often talked in the past about who might survive whom and about buying a burial plot in the village cemetery, but had not discussed these things since I was diagnosed. Delicate territory I suppose. I tell her that I had bought a very nice plot a couple of months ago but only wanted to mention it when it was the “right” time - whenever that might be. This was it. Although all this is difficult to talk about, we feel very close.
I am not feeling much better on Sunday - in fact my shoulder area is decidedly tender - and my cough is no better. We have Matthew, Charrise and the girls for the day. This includes my going through a number of practicalities with Matthew following our talks last evening. I have typed out a fairly comprehensive list of things “in case anything happens….” Matthew is super about it all and I know will be a source of great support to Tina should the worst actually happen. I plan to talk these things through with Anna as well when she is with us in the next couple of days. By mid afternoon I am tired out and have another three hours sleep on the bed.
Away to St Malo
Saturday 15th to Wednesday 19th September 2007
I drive to Portsmouth on a warm sunny day to catch the 3.45pm Brittany fast ferry to Cherbourg. We arrive at our hotel (the Beaufort) at 10.30pm, unpack and go straight to bed. I ask the receptionist to put my two packs of GCSF in their refrigerator, having brought them over in a cool bag.
Sunday is a day of wall - to - wall sunshine. After a full French lunch I sleep on the beach for about two hours - lovely! Fortunately I put sun cream on my head and avoid any sunburn. Neither of us feel like eating anything in the evening so we stay in our room, reading, etc. I remember to do my GCSF injection - thanks to my mobile phone “reminders”. This hotel is a really good find!
Monday is wet and windy. We spend most of the day in the splendid hotel lounge / breakfast room with views out to cloud covered seas . I catch up with my blog - right up to date (!!!) and am able to go online with the hotel WiFi - the wonders of modern science! But I can only download emails, not send any for some inexplicable reason. We don’t feel like anything for lunch but make up with a rather good meal at a nearby brasserie in the evening.
We wake on Tuesday to a startling change of weather. Bright, breezy and fresh, with sun and racing clouds. I post the “Escape from Kings” week on to the internet blog before we venture out to the Citadel. There we have lunch, walk the ramparts and then back to the hotel along the sandy beach, by which time I have had enough exercise for one day. Again, I remember to do my GCSF injection before we are out for yet more excellent French food at another nearby restaurant.
Again I feel ok for driving and we take the coastal road to Concalle before getting on the main roads back to Cherbourg, in time for some lunch and shopping before a rough ferry crossing to Portsmouth. We are home about 9.15pm and I am tired!
I drive to Portsmouth on a warm sunny day to catch the 3.45pm Brittany fast ferry to Cherbourg. We arrive at our hotel (the Beaufort) at 10.30pm, unpack and go straight to bed. I ask the receptionist to put my two packs of GCSF in their refrigerator, having brought them over in a cool bag.
Sunday is a day of wall - to - wall sunshine. After a full French lunch I sleep on the beach for about two hours - lovely! Fortunately I put sun cream on my head and avoid any sunburn. Neither of us feel like eating anything in the evening so we stay in our room, reading, etc. I remember to do my GCSF injection - thanks to my mobile phone “reminders”. This hotel is a really good find!
Monday is wet and windy. We spend most of the day in the splendid hotel lounge / breakfast room with views out to cloud covered seas . I catch up with my blog - right up to date (!!!) and am able to go online with the hotel WiFi - the wonders of modern science! But I can only download emails, not send any for some inexplicable reason. We don’t feel like anything for lunch but make up with a rather good meal at a nearby brasserie in the evening.
We wake on Tuesday to a startling change of weather. Bright, breezy and fresh, with sun and racing clouds. I post the “Escape from Kings” week on to the internet blog before we venture out to the Citadel. There we have lunch, walk the ramparts and then back to the hotel along the sandy beach, by which time I have had enough exercise for one day. Again, I remember to do my GCSF injection before we are out for yet more excellent French food at another nearby restaurant.
Again I feel ok for driving and we take the coastal road to Concalle before getting on the main roads back to Cherbourg, in time for some lunch and shopping before a rough ferry crossing to Portsmouth. We are home about 9.15pm and I am tired!
Back on My Feet and the Transplant Programme Explained
Monday 10th to Friday 14th September 2007
Friday 14th September 2007
This is a big day for us with the whole day at Kings to see the transplant team and to have my kidney function test and whatever else they might throw at me! Steve Devereux is away today, so we do not see him and, as it happens, I don’t think it necessarily mattered. The kidney function test is done in the Nuclear Medicine Department and takes all day. It starts with an injection, followed two hours later by a blood test and three further blood tests at 45 minute intervals. I have a cannula fitted to make these easier. In between times, I have a chest x-ray and an ECG. Andre also needs about ten further blood samples, which the sister in Nuclear Medicine takes for him. It is a good thing I have a cannula! Having said that it becomes more uncomfortable as the day goes on as it is in the crook of my arm. We bump into Danny and Donna in the haematology waiting room once again. It is great to see them and we have a good chat. Danny is waiting to get the results of his latest assessment and is hoping he has an “all clear”. He certainly deserves it.
We have a long and informative session with the transplant registrar, the delightful Dr. Mansour Ceesay. He runs through all aspects of the transplant programme and I sign the consent form. There are to be nine preparation days before the actual stem cell transfusion. After a reception day (25th September) I have eight days of chemotherapy - as if I hadn't had enough! The drugs are Campath - part of my most recent treatment - and Fludarabine - which I had back in 2004. Neither presented me with any problems like hair loss or nausea at the time, but I am told to expect to have both of those things happen to me this time. I suppose that is because they are in tandem and both intra-venous. We shall have to wait and see. So this means that the transplant itself will happen on or about 4th October. This doesn't alter the projected length of the overall hospital stay at 4 to 6 weeks in all. He goes into some detail about the various disease and related problems that are likely to arise and how they would respond to them, with anti-biotics, blood products, etc. Without making a big issue of it, Mansour points out the 20 to 30% fatality risk in the procedure. That is a bit scary, but we don’t dwell on it as I am determined it is not going to apply to me!!! We are introduced to Elizabeth, the clinical trials co-ordinator for a study of the comparisons in efficacy between Itroconozole and Voriconozole as fungal infection prophylactic medicines. The Voriconozole is given in tablet form and - knowing how much I dislike the dreaded Itroconozole - I sign up immediately. Unfortunately the choice of patient to medicine is done by random draw, not patient choice. So I am foiled at the outset from escaping one of the world’s most unfavourite medicines! Never mind, there is a greater cause! As with so much about Kings, Andre is most attentive to any needs we might have and makes sure we don’t leave without having the opportunity to ask any further questions, etc.
We drive home and are straight out to Stephen and Sue’s for a candlelight steak supper on their new patio while, in the background, England get a thrashing from South Africa in the Rugby World Cup! A lovely way to end a packed day - the steak supper, not the rugby!
Thursday 13th September 2007
Terry comes round to give me a hand with the leak problem we have with the water butt. It appears that it has probably been leaking from a dodgy tap fitting for over a year presenting a potential rising damp problem for us and next door! It transpires that the problem is a washer was never fitted in the first place, so no wonder it leaked. I get a replacement tap gratis from Colin’s hardware and back goes the water butt in the afternoon, without Terry’s help. I am careful to wear my large gardening gloves at all times to avoid any possibility of infection to my hands, especially my right thumb, which still has no quick protecting it. I also discover that Tosca has been pooping on the gravel at the back and side of the conservatory - the route to the water butt. Yet another health hazard to negotiate for me!! By 5pm we are at Hickstead Showground for Tina’s previously postponed 60th birthday balloon ride. Charrise brings Ella, Lily and Mia to see us off and we have the wonderful sight of Ella running like mad across the field waving her arms furiously and trying to keep up with us as we lift off. Sheer delight!!
Wednesday 12th September 2007
Tina and I go down to PC World in Portslade to buy a new keyboard with a USB connector to fit with the docking station. After some shopping in M & S we have lunch at the Royal Oak at Wineham. This is my long awaited appointment with a pint of Harveys best bitter - and it is truly wonderful!!! To my best recollection and checking this blog, the last pint of Harveys - or any proper draught bitter for that matter - I had was on 24th June at the George at Cranbrook. That’s nearly three months ago!!
Tuesday 11th September 2007
I have an 8.45am appointment at the RSCH for a Pentamidine Nebulizer. This is followed by a blood test in the Day Unit and a review of my medications by Tim Corbett. My thumb has recovered sufficiently for the 14 days of anti-biotics to have been enough - great news - and he cuts the GCSF down to every other day. My neutrophils show another good rise, by another 0.8, to 3.2. My full results are - Wbc: 3.7; Neuts: 3.2; Lymph: 0.3; Hbn: 10.9; PLT: 96; and CRP: 10. So, good news on the infection front as well.
Monday 10th September 2007
I am still trying to get my feet up as much as possible and the weather is just right for sitting in the conservatory, with doors and windows open to keep the temperature even. So this is where I entertain Peter and Suzanne for their visit to me in the morning en route from an overnight in Alfriston and then Mavis and Andrew in the afternoon with their return flight to Canada tomorrow. It is interesting that Andrew’s cousin is going through a similar transplant process up in Birmingham.
Friday 14th September 2007
This is a big day for us with the whole day at Kings to see the transplant team and to have my kidney function test and whatever else they might throw at me! Steve Devereux is away today, so we do not see him and, as it happens, I don’t think it necessarily mattered. The kidney function test is done in the Nuclear Medicine Department and takes all day. It starts with an injection, followed two hours later by a blood test and three further blood tests at 45 minute intervals. I have a cannula fitted to make these easier. In between times, I have a chest x-ray and an ECG. Andre also needs about ten further blood samples, which the sister in Nuclear Medicine takes for him. It is a good thing I have a cannula! Having said that it becomes more uncomfortable as the day goes on as it is in the crook of my arm. We bump into Danny and Donna in the haematology waiting room once again. It is great to see them and we have a good chat. Danny is waiting to get the results of his latest assessment and is hoping he has an “all clear”. He certainly deserves it.
We have a long and informative session with the transplant registrar, the delightful Dr. Mansour Ceesay. He runs through all aspects of the transplant programme and I sign the consent form. There are to be nine preparation days before the actual stem cell transfusion. After a reception day (25th September) I have eight days of chemotherapy - as if I hadn't had enough! The drugs are Campath - part of my most recent treatment - and Fludarabine - which I had back in 2004. Neither presented me with any problems like hair loss or nausea at the time, but I am told to expect to have both of those things happen to me this time. I suppose that is because they are in tandem and both intra-venous. We shall have to wait and see. So this means that the transplant itself will happen on or about 4th October. This doesn't alter the projected length of the overall hospital stay at 4 to 6 weeks in all. He goes into some detail about the various disease and related problems that are likely to arise and how they would respond to them, with anti-biotics, blood products, etc. Without making a big issue of it, Mansour points out the 20 to 30% fatality risk in the procedure. That is a bit scary, but we don’t dwell on it as I am determined it is not going to apply to me!!! We are introduced to Elizabeth, the clinical trials co-ordinator for a study of the comparisons in efficacy between Itroconozole and Voriconozole as fungal infection prophylactic medicines. The Voriconozole is given in tablet form and - knowing how much I dislike the dreaded Itroconozole - I sign up immediately. Unfortunately the choice of patient to medicine is done by random draw, not patient choice. So I am foiled at the outset from escaping one of the world’s most unfavourite medicines! Never mind, there is a greater cause! As with so much about Kings, Andre is most attentive to any needs we might have and makes sure we don’t leave without having the opportunity to ask any further questions, etc.
We drive home and are straight out to Stephen and Sue’s for a candlelight steak supper on their new patio while, in the background, England get a thrashing from South Africa in the Rugby World Cup! A lovely way to end a packed day - the steak supper, not the rugby!
Thursday 13th September 2007
Terry comes round to give me a hand with the leak problem we have with the water butt. It appears that it has probably been leaking from a dodgy tap fitting for over a year presenting a potential rising damp problem for us and next door! It transpires that the problem is a washer was never fitted in the first place, so no wonder it leaked. I get a replacement tap gratis from Colin’s hardware and back goes the water butt in the afternoon, without Terry’s help. I am careful to wear my large gardening gloves at all times to avoid any possibility of infection to my hands, especially my right thumb, which still has no quick protecting it. I also discover that Tosca has been pooping on the gravel at the back and side of the conservatory - the route to the water butt. Yet another health hazard to negotiate for me!! By 5pm we are at Hickstead Showground for Tina’s previously postponed 60th birthday balloon ride. Charrise brings Ella, Lily and Mia to see us off and we have the wonderful sight of Ella running like mad across the field waving her arms furiously and trying to keep up with us as we lift off. Sheer delight!!
Wednesday 12th September 2007
Tina and I go down to PC World in Portslade to buy a new keyboard with a USB connector to fit with the docking station. After some shopping in M & S we have lunch at the Royal Oak at Wineham. This is my long awaited appointment with a pint of Harveys best bitter - and it is truly wonderful!!! To my best recollection and checking this blog, the last pint of Harveys - or any proper draught bitter for that matter - I had was on 24th June at the George at Cranbrook. That’s nearly three months ago!!
Tuesday 11th September 2007
I have an 8.45am appointment at the RSCH for a Pentamidine Nebulizer. This is followed by a blood test in the Day Unit and a review of my medications by Tim Corbett. My thumb has recovered sufficiently for the 14 days of anti-biotics to have been enough - great news - and he cuts the GCSF down to every other day. My neutrophils show another good rise, by another 0.8, to 3.2. My full results are - Wbc: 3.7; Neuts: 3.2; Lymph: 0.3; Hbn: 10.9; PLT: 96; and CRP: 10. So, good news on the infection front as well.
Monday 10th September 2007
I am still trying to get my feet up as much as possible and the weather is just right for sitting in the conservatory, with doors and windows open to keep the temperature even. So this is where I entertain Peter and Suzanne for their visit to me in the morning en route from an overnight in Alfriston and then Mavis and Andrew in the afternoon with their return flight to Canada tomorrow. It is interesting that Andrew’s cousin is going through a similar transplant process up in Birmingham.
Getting Back on My Feet
Monday 3rd to Sunday 9th September 2007
Sunday 9th September 2007
I still have my horrible cough and cold, so have to absent myself halfway through Mass to avoid interrupting proceedings too much. We then drive to Richard and Jane’s at Shorne for the grand Ugarte family reunion in memory of Eve and Tessa‘s recent and forthcoming first anniversaries. Ironically today is the 15th anniversary of John’s death as well. We have a super late summer‘s day with lunch out on the edge of their field. I am on the Metronidazole wagon of course, but with my taste buds still all over the place, it is really no problem. Very nearly all the Ugarte, Sharp and Hart clans are there and there is absolutely no lull in the conversation as everyone moves from table to table catching up with cousins, etc. Jane plans to repeat the event again next year. I manage to get my feet up for some time before lunch, but it is not so easy afterwards. What is good for me is that I can get out and enjoy myself at an occasion like this, which seven days earlier would not have been the case at all.
Saturday 8th September 2007
A quiet day with a wander up the village for coffee and also chats and buys in Inspirations. Simon comes to us in the afternoon and does some clever stuff with the laptop, setting up the printer and the Ion record deck. It isn’t easy and he has to use all his acumen. He is finished just in time for us to watch the England - Israel Euro ‘08 qualifier.
Friday 7th September 2007
At last I have finished my seven days of the dreaded Metronidazole! I am not sure yet whether it was to blame for the nasty taste I have had in my mouth day and night, or not. I still have a further five days before I can have any alcoholic drink and can hardly wait for the chance to try a pint of Harveys! I get a newly published Q & A book in the post from the CLL Support Association. It states it is more for dipping into rather than reading from cover to cover. It certainly goes into a lot of detail and I am sure will prove to be extremely helpful to me - even after all this time - and to those recently arrived on the CLL scene. I spend a lot of the day sorting out paperwork, etc. that had accumulated during my six weeks in hospital.
Thursday 6th September 2007
I am back to the Day Unit for a blood test today, the results of which show once again
a really good increase in my neutrophil count of another 0.8, to 2.4! My full results are -
Wbc: 2.8; Neuts: 2.4; Lymph: 0.2; Hbn: 10.7; PLT: 86; and CRP: 11. I also get a script for daily GCSF for the next three weeks and my weight is slightly up at 77 kgs. I don’t know why, but my oedema has returned in a big way, with my legs swollen from feet to thighs again. My best guess is that I am not resting my legs enough - which is true! There are so many distractions at home stopping getting those feet up for any length of time, compared with being in hospital. One of these distractions - successfully completed - is to book ourselves for four nights at the Hotel Beaufort in St. Malo from Saturday 15th. The Rough Guide to Brittany and Normandy comes to the rescue in the search for the “right“ hotel, with a rather nice write up for the Beaufort. Then one look at their website is enough for me to be on the telephone to Sylvie Peterson and “Yes I do have a sea facing room for four nights for you” is her response. (Matthew later does us proud with a good price for the Portsmouth - Cherbourg ferry!) My small exercise regime is beginning to work. I am increasing the number of knee bends daily and am now up to 18. More importantly, my leg muscles feel so much stronger, particularly my thighs.
Wednesday 5th September 2007
We spend a quiet day together, including a stroll up to the village and a coffee in Café Murano. I am still struggling somewhat with the taste and smell of coffee, but the Murano coffee is always excellent. The smell of instant coffee is a real problem for me - so I haven’t a clue what the taste is like! In an effort to build me up, we bought some more of Clive’s superb meat for tonight’s dinner. I am eating quite well, but still do not have a fulsome appetite.
Tuesday 4th September 2007
In the morning I visit the dentist because of the lost molar filling from a couple of weeks back. The dentist is extremely attentive to my medical condition, medications, etc. and makes extensive notes for the dental records. I am very impressed - and I am very fortunate to have a dentist who is still on the NHS. She advises that she will not do a complete filling as this would require an anaesthetic and would not be a good idea given my current situation. So I have a temporary filling instead and must go back once I am through with the transplant and back to full health. Tina then drives me to Brighton where I have three units of blood. I am still having problems with my veins, despite the use of the heat pad. The chosen vein is at the base of my right thumb and rather uncomfortable all through with the third unit going in quite painfully. It doesn’t help that I have a slightly arthritic thumb joint! I get my chest checked out. It is OK but with congestion - and catarrh - in the upper respiratory tract. My weight is as yesterday -
76.5 kgs.
Monday 3rd September 2007
I am now happy to drive myself so I drive to Brighton for my 10am blood test. It turns out to be a very busy day for me and I have no time to put my feet up until late afternoon. I call into to Vincent and Joyce’s for a cup of tea - as opposed to their kind thought of a visit to “the sick” by coming to see me! When I get home there are letters from Kings about pre-transplant appointments and then I get a call from Andre Jansen to tell me my admission date will be Tuesday 25th September - Eeeeek! My blood results show a further improvement with my neutrophils, but I am anaemic and need a blood transfusion. No wonder I had been feeling I lacked energy! My results are - Wbc: 1.9; Neuts: 1.6; Lymph: 0.2; Hbn: 8.4; PLT: 83; and CRP: 12. But I have to go back to the RSCH in the afternoon for blood matching and still have time for an hour’s sleep! I spend some time later looking on the internet for somewhere in Normandy or Brittany for a few days break before I go in, but without coming to any conclusions. We are determined to get away for some quality time together after six weeks enforced separation and with the prospect of another six weeks apart with my transplant. My weight today is 76.5 kgs - up 1 kg from Thursday.
Sunday 9th September 2007
I still have my horrible cough and cold, so have to absent myself halfway through Mass to avoid interrupting proceedings too much. We then drive to Richard and Jane’s at Shorne for the grand Ugarte family reunion in memory of Eve and Tessa‘s recent and forthcoming first anniversaries. Ironically today is the 15th anniversary of John’s death as well. We have a super late summer‘s day with lunch out on the edge of their field. I am on the Metronidazole wagon of course, but with my taste buds still all over the place, it is really no problem. Very nearly all the Ugarte, Sharp and Hart clans are there and there is absolutely no lull in the conversation as everyone moves from table to table catching up with cousins, etc. Jane plans to repeat the event again next year. I manage to get my feet up for some time before lunch, but it is not so easy afterwards. What is good for me is that I can get out and enjoy myself at an occasion like this, which seven days earlier would not have been the case at all.
Saturday 8th September 2007
A quiet day with a wander up the village for coffee and also chats and buys in Inspirations. Simon comes to us in the afternoon and does some clever stuff with the laptop, setting up the printer and the Ion record deck. It isn’t easy and he has to use all his acumen. He is finished just in time for us to watch the England - Israel Euro ‘08 qualifier.
Friday 7th September 2007
At last I have finished my seven days of the dreaded Metronidazole! I am not sure yet whether it was to blame for the nasty taste I have had in my mouth day and night, or not. I still have a further five days before I can have any alcoholic drink and can hardly wait for the chance to try a pint of Harveys! I get a newly published Q & A book in the post from the CLL Support Association. It states it is more for dipping into rather than reading from cover to cover. It certainly goes into a lot of detail and I am sure will prove to be extremely helpful to me - even after all this time - and to those recently arrived on the CLL scene. I spend a lot of the day sorting out paperwork, etc. that had accumulated during my six weeks in hospital.
Thursday 6th September 2007
I am back to the Day Unit for a blood test today, the results of which show once again
a really good increase in my neutrophil count of another 0.8, to 2.4! My full results are -
Wbc: 2.8; Neuts: 2.4; Lymph: 0.2; Hbn: 10.7; PLT: 86; and CRP: 11. I also get a script for daily GCSF for the next three weeks and my weight is slightly up at 77 kgs. I don’t know why, but my oedema has returned in a big way, with my legs swollen from feet to thighs again. My best guess is that I am not resting my legs enough - which is true! There are so many distractions at home stopping getting those feet up for any length of time, compared with being in hospital. One of these distractions - successfully completed - is to book ourselves for four nights at the Hotel Beaufort in St. Malo from Saturday 15th. The Rough Guide to Brittany and Normandy comes to the rescue in the search for the “right“ hotel, with a rather nice write up for the Beaufort. Then one look at their website is enough for me to be on the telephone to Sylvie Peterson and “Yes I do have a sea facing room for four nights for you” is her response. (Matthew later does us proud with a good price for the Portsmouth - Cherbourg ferry!) My small exercise regime is beginning to work. I am increasing the number of knee bends daily and am now up to 18. More importantly, my leg muscles feel so much stronger, particularly my thighs.
Wednesday 5th September 2007
We spend a quiet day together, including a stroll up to the village and a coffee in Café Murano. I am still struggling somewhat with the taste and smell of coffee, but the Murano coffee is always excellent. The smell of instant coffee is a real problem for me - so I haven’t a clue what the taste is like! In an effort to build me up, we bought some more of Clive’s superb meat for tonight’s dinner. I am eating quite well, but still do not have a fulsome appetite.
Tuesday 4th September 2007
In the morning I visit the dentist because of the lost molar filling from a couple of weeks back. The dentist is extremely attentive to my medical condition, medications, etc. and makes extensive notes for the dental records. I am very impressed - and I am very fortunate to have a dentist who is still on the NHS. She advises that she will not do a complete filling as this would require an anaesthetic and would not be a good idea given my current situation. So I have a temporary filling instead and must go back once I am through with the transplant and back to full health. Tina then drives me to Brighton where I have three units of blood. I am still having problems with my veins, despite the use of the heat pad. The chosen vein is at the base of my right thumb and rather uncomfortable all through with the third unit going in quite painfully. It doesn’t help that I have a slightly arthritic thumb joint! I get my chest checked out. It is OK but with congestion - and catarrh - in the upper respiratory tract. My weight is as yesterday -
76.5 kgs.
Monday 3rd September 2007
I am now happy to drive myself so I drive to Brighton for my 10am blood test. It turns out to be a very busy day for me and I have no time to put my feet up until late afternoon. I call into to Vincent and Joyce’s for a cup of tea - as opposed to their kind thought of a visit to “the sick” by coming to see me! When I get home there are letters from Kings about pre-transplant appointments and then I get a call from Andre Jansen to tell me my admission date will be Tuesday 25th September - Eeeeek! My blood results show a further improvement with my neutrophils, but I am anaemic and need a blood transfusion. No wonder I had been feeling I lacked energy! My results are - Wbc: 1.9; Neuts: 1.6; Lymph: 0.2; Hbn: 8.4; PLT: 83; and CRP: 12. But I have to go back to the RSCH in the afternoon for blood matching and still have time for an hour’s sleep! I spend some time later looking on the internet for somewhere in Normandy or Brittany for a few days break before I go in, but without coming to any conclusions. We are determined to get away for some quality time together after six weeks enforced separation and with the prospect of another six weeks apart with my transplant. My weight today is 76.5 kgs - up 1 kg from Thursday.
Tuesday 18 September 2007
Week Three in Kings: Discharge and Clostridium Difficile
Monday 27th August to Sunday 2nd September 2007
Thursday 30th August to Sunday 2nd September 2007
I have a nice sleep-in to 7.40am on my first day of freedom and have my usual breakfast but struggle with the thick toast we have at home. I walk up to Janton’s for my paper at 11am and drop into the Rodgers for some coffee. Funny having coffee for the first time for well over six weeks, but it is proper filter coffee as ever with Jim and Cath and works well with my taste buds. I admit that it is a bit of a try-out as I have no idea what it would be like. I am back on my regular lunch menu - Covent Garden soup, pastrami and Ryvitas - but no salad yet as I am still neutropenic. I am still a bit wobbly so Tina came back from work to drive me down to the RSCH for a blood test arranged for 3pm. Great news - I break through the neutrophil barrier with a count of 1.1! My full blood results are - Wbc: 1.5; Neut: 1.1; Lymph: 0.4; Hbn: 9.2; PLT: 83; and CRP: 12. My weight is 75.5kgs.
My diarrhoea has returned so on Friday morning I go to see Richard Cook for a prescription for seven days of Metronidasole. This is not good news as, not only has the C-Difficile returned, but I cannot drink alcohol for the next 12 days! While I with Richard I also get a prescription for a supply of Fortisip build-up drinks and then I walk round to the Swallows and deliver Dris’ Moroccan melon to them for Anna. I think Richard might have thought it was for him!
We had a very quiet weekend, simply resting, doing nothing and having no visitors either. It was just what we both needed. We celebrated the return of a certain amount of appetite with fillet steak - Clive Miller’s finest! I spend as much time with my feet up as I have a lot of oedema.
Wednesday 29th August 2007
I am awake and doing Sudoku from 5am for the second day running. But lots of catarrh and coughing up phlegm - and some sneezes too! After 30 minutes of the heat pad, my morning blood sample is offered up by my right arm with no difficulty, as opposed to yesterday. For the fifth day running my weight is 75 kgs. That is with a pretty good breakfast and two cooked meals a day, plus three Fortisip drinks. I am advised by Staff Nurse Helena to keep building up my weight over the weeks ahead as the likelihood will be for me to lose weight post transplant. Sounds like good advice to me plus a daily diet of Fortisips to look forward to! My blood results today are - Wbc: 0.86; Neut: 0.60; Lymph: 0.25; Hbn: 9.1; and PLT: 64. So small but steady progress with the neutrophils and we are aiming for my discharge for later in the day. Tina is here at 4pm. I am packed and ready but have to wait to get the all clear on my thumb from Kat at 6pm and then my medicines, including 14 days worth of the three anti-biotics. At last I escape at 7.30pm after a total of just short of six weeks incarceration! We have a good run and are home at 9pm. It’s so good to get home again, but I have left hospital with two unwanted “presents” - a bad cold and Clostridium Difficile!! - not exactly a “healthy exit” plan!
Tuesday 28th August 2007
My weight is 75 kgs again. My early morning anti-biotic bolus is quite uncomfortable - not really unexpected. Despite the heat pad Jinky cannot get blood from me this morning and Kat decides that alternate days will suffice. I would prefer to know what my counts are every day, but recognise the practicalities once again of the “trying to get blood out of a stone” syndrome. Because of my awkward left wrist I have a right handed wash, after which I notice that my thumb “wound” is open, tempting me to do a little squeezing and up pops another small piece of foreign matter looking like a tiny black headed grub. I wait to be seen by Kat and a new registrar (Dr) Jane who ease out what could be the tip of a rose thorn followed by a small piece of tissue - or something. I wonder is that everything now? I am told that a decision may be made to change me to oral anti-biotics this afternoon. I go for a routine x-ray - apparently this happens every week to all the patients on this ward. My 2pm bolus is equally uncomfortable as earlier. After several days of extra effort I have managed to completely catch up with my blog, made easier thanks to my habit of making lots of notes! Talking to Matthew on the phone, he checks my blog on the internet - my last entry is dated Friday 15th June. So I am over ten weeks out of date!
I am told that my diarrhoea sample from Saturday has shown that I have the infamous Clostridium Difficile infection - great! Frances gives me an explanatory leaflet and I am seen by Kat. Because the symptoms were gone in two days, I do not need to have any anti-biotic treatment. However the infection will remain in me for 14 days, so I must be even more meticulous with hand washing after using the toilet - the alcohol-based hand cleanser in ineffective in killing off the spores. Apparently the spores are very hardy and can be transported to and from patients, etc. by the hands. It is likely I have caught it because I have been on anti-biotics, altering the normal bacteria in my bowel and allowing Clostridium Difficile to multiply. However it is not always very clear how it gets there in the first place. If I get a return of the diarrhoea I must get the anti-biotic Metronidozole from my GP - probably a seven day dosage. Lets hope that doesn’t happen. Because of the recent promising developments with my thumb, Kat has also decided to take me off the intra-venous anti-biotics and put me on to oral. I have Flucloxicillin, Amoxycillin and Augmentin three times daily, starting this evening. She will check how the thumb looks after three doses, ie late afternoon tomorrow, with a view to my possibly being discharged then. To my immense relief I have the cannula removed from my wrist in the evening, so that I can move my left hand without the stabbing discomfort of the last 24 hours. I finish “Rough Crossings” -what a brilliant book!
Monday 27th August 2007
It’s August Bank Holiday, the weather is good, as it’s been for the last two days and forecast for tomorrow as well. My cough and cold seems slightly better and the diarrhoea has gone. My weight is 75 kgs again this morning. I see Dr. Vidya and she removes some “stuff” from the hole in my thumb. In the middle of it is a piece of thorn! At last! Maybe now it can start healing itself. The not-so-good news is that my neutrophil count is down to 0.41. My full blood results are - Wbc: 0.80; Neut: 0.41; Lymph: 0.38; Hbn: 9.6; PLT: 51; and CRP: 14. I have a celebration Guinness with my lunch on the strength of the thorn removal. I have a good chat with Michael, the ward volunteer, in the afternoon. I have been increasing the number of knee bends I am doing for my exercises and am now up to 15. It doesn’t sound much but it is hard and quite painful, so I guess it is doing me some good! My cannula becomes too painful for me to have my evening anti-biotic, so it is removed and replaced by one on the inside of my left wrist. This is an awkward place and very uncomfortable, as any movement hurts. However the first dose of anti-biotics goes in painlessly. I have felt that the filling on one of my lower right molar teeth has shifted position in the last couple of days, but could not work out was has actually happened. This evening, with a little help from my thumb nail, out pops a crown! It feels like I now have an enormous gap in my back teeth! - and an urgent and expensive visit to the dentist as soon as I get home. At least it has happened now and not while I am having my transplant!
Thursday 30th August to Sunday 2nd September 2007
I have a nice sleep-in to 7.40am on my first day of freedom and have my usual breakfast but struggle with the thick toast we have at home. I walk up to Janton’s for my paper at 11am and drop into the Rodgers for some coffee. Funny having coffee for the first time for well over six weeks, but it is proper filter coffee as ever with Jim and Cath and works well with my taste buds. I admit that it is a bit of a try-out as I have no idea what it would be like. I am back on my regular lunch menu - Covent Garden soup, pastrami and Ryvitas - but no salad yet as I am still neutropenic. I am still a bit wobbly so Tina came back from work to drive me down to the RSCH for a blood test arranged for 3pm. Great news - I break through the neutrophil barrier with a count of 1.1! My full blood results are - Wbc: 1.5; Neut: 1.1; Lymph: 0.4; Hbn: 9.2; PLT: 83; and CRP: 12. My weight is 75.5kgs.
My diarrhoea has returned so on Friday morning I go to see Richard Cook for a prescription for seven days of Metronidasole. This is not good news as, not only has the C-Difficile returned, but I cannot drink alcohol for the next 12 days! While I with Richard I also get a prescription for a supply of Fortisip build-up drinks and then I walk round to the Swallows and deliver Dris’ Moroccan melon to them for Anna. I think Richard might have thought it was for him!
We had a very quiet weekend, simply resting, doing nothing and having no visitors either. It was just what we both needed. We celebrated the return of a certain amount of appetite with fillet steak - Clive Miller’s finest! I spend as much time with my feet up as I have a lot of oedema.
Wednesday 29th August 2007
I am awake and doing Sudoku from 5am for the second day running. But lots of catarrh and coughing up phlegm - and some sneezes too! After 30 minutes of the heat pad, my morning blood sample is offered up by my right arm with no difficulty, as opposed to yesterday. For the fifth day running my weight is 75 kgs. That is with a pretty good breakfast and two cooked meals a day, plus three Fortisip drinks. I am advised by Staff Nurse Helena to keep building up my weight over the weeks ahead as the likelihood will be for me to lose weight post transplant. Sounds like good advice to me plus a daily diet of Fortisips to look forward to! My blood results today are - Wbc: 0.86; Neut: 0.60; Lymph: 0.25; Hbn: 9.1; and PLT: 64. So small but steady progress with the neutrophils and we are aiming for my discharge for later in the day. Tina is here at 4pm. I am packed and ready but have to wait to get the all clear on my thumb from Kat at 6pm and then my medicines, including 14 days worth of the three anti-biotics. At last I escape at 7.30pm after a total of just short of six weeks incarceration! We have a good run and are home at 9pm. It’s so good to get home again, but I have left hospital with two unwanted “presents” - a bad cold and Clostridium Difficile!! - not exactly a “healthy exit” plan!
Tuesday 28th August 2007
My weight is 75 kgs again. My early morning anti-biotic bolus is quite uncomfortable - not really unexpected. Despite the heat pad Jinky cannot get blood from me this morning and Kat decides that alternate days will suffice. I would prefer to know what my counts are every day, but recognise the practicalities once again of the “trying to get blood out of a stone” syndrome. Because of my awkward left wrist I have a right handed wash, after which I notice that my thumb “wound” is open, tempting me to do a little squeezing and up pops another small piece of foreign matter looking like a tiny black headed grub. I wait to be seen by Kat and a new registrar (Dr) Jane who ease out what could be the tip of a rose thorn followed by a small piece of tissue - or something. I wonder is that everything now? I am told that a decision may be made to change me to oral anti-biotics this afternoon. I go for a routine x-ray - apparently this happens every week to all the patients on this ward. My 2pm bolus is equally uncomfortable as earlier. After several days of extra effort I have managed to completely catch up with my blog, made easier thanks to my habit of making lots of notes! Talking to Matthew on the phone, he checks my blog on the internet - my last entry is dated Friday 15th June. So I am over ten weeks out of date!
I am told that my diarrhoea sample from Saturday has shown that I have the infamous Clostridium Difficile infection - great! Frances gives me an explanatory leaflet and I am seen by Kat. Because the symptoms were gone in two days, I do not need to have any anti-biotic treatment. However the infection will remain in me for 14 days, so I must be even more meticulous with hand washing after using the toilet - the alcohol-based hand cleanser in ineffective in killing off the spores. Apparently the spores are very hardy and can be transported to and from patients, etc. by the hands. It is likely I have caught it because I have been on anti-biotics, altering the normal bacteria in my bowel and allowing Clostridium Difficile to multiply. However it is not always very clear how it gets there in the first place. If I get a return of the diarrhoea I must get the anti-biotic Metronidozole from my GP - probably a seven day dosage. Lets hope that doesn’t happen. Because of the recent promising developments with my thumb, Kat has also decided to take me off the intra-venous anti-biotics and put me on to oral. I have Flucloxicillin, Amoxycillin and Augmentin three times daily, starting this evening. She will check how the thumb looks after three doses, ie late afternoon tomorrow, with a view to my possibly being discharged then. To my immense relief I have the cannula removed from my wrist in the evening, so that I can move my left hand without the stabbing discomfort of the last 24 hours. I finish “Rough Crossings” -what a brilliant book!
Monday 27th August 2007
It’s August Bank Holiday, the weather is good, as it’s been for the last two days and forecast for tomorrow as well. My cough and cold seems slightly better and the diarrhoea has gone. My weight is 75 kgs again this morning. I see Dr. Vidya and she removes some “stuff” from the hole in my thumb. In the middle of it is a piece of thorn! At last! Maybe now it can start healing itself. The not-so-good news is that my neutrophil count is down to 0.41. My full blood results are - Wbc: 0.80; Neut: 0.41; Lymph: 0.38; Hbn: 9.6; PLT: 51; and CRP: 14. I have a celebration Guinness with my lunch on the strength of the thorn removal. I have a good chat with Michael, the ward volunteer, in the afternoon. I have been increasing the number of knee bends I am doing for my exercises and am now up to 15. It doesn’t sound much but it is hard and quite painful, so I guess it is doing me some good! My cannula becomes too painful for me to have my evening anti-biotic, so it is removed and replaced by one on the inside of my left wrist. This is an awkward place and very uncomfortable, as any movement hurts. However the first dose of anti-biotics goes in painlessly. I have felt that the filling on one of my lower right molar teeth has shifted position in the last couple of days, but could not work out was has actually happened. This evening, with a little help from my thumb nail, out pops a crown! It feels like I now have an enormous gap in my back teeth! - and an urgent and expensive visit to the dentist as soon as I get home. At least it has happened now and not while I am having my transplant!
Monday 10 September 2007
Week Two in Kings and I Nearly Get Home
Monday 20th to Sunday 26th August 2007
Sunday 26th August 2007
I wake with a definite cough this morning and bringing up chesty phlegm. I have more catarrh as well. I am asked to give a sample of sputum. It is green - not so good. I mention this to the two Sarahs; I am checked over and given an all clear for today. My blood sample is taken at the second attempt, helped by the heat pad. It seems that the veins in my right arm are much easier to access than those in my left - and this has been the case for the past few days. Tina arrives at 1pm and stays for three hours. Just before she leaves I get my blood results, which tell me that my neutrophils have gone up again - to 0.54. My full results are - Wbc: 0.94; Neut: 0.54; Lymph: 0.38; Hbn: 9.8; PLT: 51. My weight this morning was 75 kgs again.
Saturday 25th August 2007
My weight is 75 kgs this morning. My blood samples are taken easily after using the heat pad and I have no discomfort with my anti-biotics even though the cannula is in an awkward and slightly painful place. I now have diarrhoea(!) - such that I have to give a sample for analysis. The little plug of congealed blood comes out from the “head” of my infected thumb. I keep it but is of no real interest to the doctors when they come - two Sarahs. But the good news is that my neutrophils have doubled since yesterday. My blood counts are - Wbc: 0.93; Neut: 0.49; Lymph: 0.42; Hbn: 10.8; PLT: 54; CRP: 10.7.
Fr. Luke gives me Holy Communion in the afternoon, which is otherwise spent watching Rugby League and Union through to 7pm. My anti-biotics boluses are quite uncomfortable despite the cannula being only 20 hours old. I am catching up well with my blog entries, bearing in mind how many days I let slip by feeling up to doing it. Despite realising some days ago that I should be doing leg strengthening exercises, I have not got down to doing any yet! So I have decided to put a reminder on my mobile phone for the afternoon and evening and I do six or eight knee bends - at least it is a start. I have also started a cough this afternoon; this on top of an increase in catarrh and nose blowing in recent days.
Friday 24th August 2007
I am awoken at 5.30am so they can have early blood samples. I suggest the heat pad will help - and it does. Staff Nurse Susie has no problem getting a large number of samples. The process is repeated later in the morning when some further samples are required and it works successfully again for Jinky. I am 76 kgs again today. I spend the morning on my blog, before lunch and then Matthew and Charrise both arrive at the same time. It is their anniversary and they are in town for the day and overnight, having dinner at Mon Plaisir and seeing “Joseph”. My blood transfusion is started at 12.30pm. Tina calls me to say that Steve Scott has offered to drive up with her to collect me. Isn’t that great! One of the pharmacists comes by to go through my discharge medications with me. She says with confidence that they will all be with me by 3.30pm. I say that I will believe that when I see it and of course they arrive at 5pm. Fortunately I am not held up because of that as Tina arrives at the same time and we do the final packing. In the meantime I have had a discharge chat with Dr Lara about my temperature not being below 37 for the last 36 hours. I also point out that as I am having the second unit of blood and whilst talking to her I am having a hot flush for half an hour or more. She checks me over and says that I am ok as long as my temperature does not go above 37.4c. Looking ahead I ask if there is a possibility of having the kidney function test, the fitting of the Hickman line and the clinic appointment with Steve Devereux all arranged for the same day.
I then have a very interesting visit from someone from the Hospital’s infection control team to check on the cleanliness of my room. I take the opportunity to mention something that has been bugging me for months, particularly in relation to MRSA. This is that, with the exception of here in the Derek Mitchell Unit, in all my recent experiences of three hospitals and at least six wards - maybe more counting Darenth Valley - I have never seen or heard a member of nursing staff challenge anyone as to whether they have cleaned their hands before visiting a patient - NEVER, EVER! There seems to be a total reliance on visitors - or whoever - knowing they should do it as they enter a ward or being reminded by their reading the advisory notices - which are of varying quality and visibility and can be passed by unseen. As a patient, I have never been told what infection control regime I should adhere to either. I am amazed that nursing staff do not seem to think it is within their responsibilities to “gatekeep” infection control on their wards. This, despite the huge media focus on MRSA and other hospital based infections. So the lady from Infection Control got more than she expected from her visit to me! She explained that her unit ran training for nursing staff on Infection Control and she would feedback my comments into the training they did.
At 6pm Tina is with me, I am packed and ready to go, when I notice that the little plug of dried blood at the core of my infected thumb had popped out and was hanging on by a small piece of tissue, exposing a small hole underneath. I am not happy about this, so I ask that a doctor see it. Fortunately it is Kat who comes and she doesn’t like the look of it, but more importantly notices that my thumb is more inflamed than yesterday. So we made a complete volte face. I am to stay in order to go back on intra-venous anti-biotics! Tina agrees that it is the right thing to do, despite otherwise wanting me to come home. I go downstairs to see and thank Steve for his kindness today and to apologise for the waste of his time this afternoon and evening and they leave for Hurst. I call Daphne and send some text messages to those I had triumphantly told I was coming home. I have to have a new cannula fitted. This does not get done until 11.30pm, at the third painful attempt, when I have one inserted on my right wrist in a rather awkward position. My anti-biotics go in alright and without any pain, but my hand and wrist are uncomfortable all night. I doze on my bed until 2am before tucking down. My blood counts today are - Wbc: 0.56; Neut: 0.23; Lymph: 0.32; Hbn: 8.6; PLT: 42. I do not get a CRP reading on the print out.
Thursday 23rd August 2007
I am up and showered before breakfast, but I have a very uncomfortable time having the anti-biotics through my cannula, which is just over 48 hours old. Time for yet another one. Despite the heat pad Staff Nurse Jinky has no joy getting my blood samples, so Snr. Staff Nurse Malin comes to the rescue fitting a new cannula on my left forearm and getting my blood samples from it. I am blogging at 11.15am. After lunch I am taken to the Nuclear Medicine Unit for a heart scan or “MUGA” to see how strong my heart is. I come out radio active! Tina, Anna and Eva arrive while I am there. We get back to my room, get news that my neutrophils hav gone up a shade to 0.26 and meet up with Steve Devereux, Lara, Kat and a delightful, Professor Duvivier, consultant dermatologist - he of the colourful and flamboyant bow tie! (check title). There ensues a fascinating examination and clinical discussion about my infected thumb, its history and levels of discomfort over the past few weeks. Professor Duvivier is enthusiastic about exploring inside but Steve Devereux is cautious as my low immune system could leave me open for more problems. So it is to be left to see how it progresses. The polite interplay between these two professionals is a joy to witness! Steve then discusses my situation with us and concludes that, with an apparent rising immune system, I can go home. I am to come off intra-venous anti-biotics and on to tablet form, I must watch out for any adverse change in the condition of my thumb and have twice weekly blood tests at Brighton. The transplant can go ahead in about four or five weeks time with the “C mismatch” donor initially identified a couple of months ago. The Hickman line fitting can be put back to nearer the transplant time, I have to have a kidney function check some time in the next 4 weeks and also to see him in his clinic to talk through the detail of the transplant. So it is great news!
My blood results today are - Wbc: 0.51; Neut: 0.26; Lymph: 0.24; Hbn: 8.6; PLT: 39; and CRP: 10.5. My weight is 76 kgs. With my Hbn count at 8.6, I am also to have 2 units of blood. I am later told that there is a new policy that blood can only be given between 9am and 5pm. Considering how, in my past experience, I always seem to be having blood through to the late the evening, I will believe that when I see it! I have a dozy evening.
Wednesday 22nd August 2007
My early morning Merapenam bolus and attendant flushes are uncomfortable again.
However, when it comes to taking my regular blood sample and the 500 ml of blood for Steve Devereux’s research, Staff Nurse Marianita uses the heat pad on my arm and I bleed from the crook of my arm readily and painlessly- at last! My weight is back to 77 kgs this morning, confirmed by an accurate machine later today. At 11am I have a lung function check. It takes more than an hour overall and seems to go pretty well. The analysed results have to be worked out before I find out what they are. Cold soup and lukewarm dinner follow. I hate this 12 midday institutional lunchtime! I hear that Steve Devereux was on the ward and looking for me while I was out! - but I am seen by Dr. Kat anyway. She tells me I have an appointment for the fitting of a Hickman line next Monday and using my time here to have several of the necessary checks, etc. done that are needed in preparation for the transplant, so saving days when the time comes for it. She also tells me the good news that my neutrophils today have gone up to 0.24! This is great news as it is the first time the neutrophils have come off the floor since 6th August -over two weeks ago. I celebrate in the evening with a Guinness while watching England lose 2-1 to Germany at football. I have a visit from Tessa after work which was nice and then I show Staff Nurse Marianita how blunt the needles on the GCSF packs are by a practical demonstration. She agrees with me and will feed this back to the pharmacists. My full blood results today are: Wbc: 0.51; Neut: 0.24; Lymph: 0.25; Hbn: 9.4; PLT: 36; and CRP: 11.3.
Tuesday 21st August 2007
More problems getting blood from me at 7.30am and after one try, it is aborted and not attempted again today. My weight today is up at 79 kgs and I notice I still have plenty of oedema in my legs. I am seen by Dr. Lara after lunch and get the latest thoughts on the possible next moves. We cover the difficulties getting blood samples from me, cannula lifespan, plasma exchange and a femoral line (now less likely), installing a PICC line (unlikely) and installing a Hickman line (most likely) ahead of its need for the bone marrow transplant. So, provided it can be done really soon, the Hickman line would be the answer to both problems of obtaining blood samples and 24 hour cannula lifespans. It transpires that it is not imperative to have blood samples every day and that every other day will suffice. Lara mentions a request from Dr. Devereux for a blood sample for his research work. With the likelihood of my having a residue of Campath in my blood, he wants to use it to help set up a method of measuring and tracking amounts of Campath in the blood over time. She reiterates that he hopes to see me as soon as he can. Tina arrives just in time to come with me while I have an x-ray - a routine procedure for all patients on my ward today.
I contact Dave Lloyd in Sussex Police Welfare giving him some idea about likely forthcoming travel costs for Tina when I am up here with the bone marrow transplant. He will check on Welfare policy and make an application on our behalf. Having contributed for 39 years, it seems reasonable to ask for something back. It will certainly help! I am told that I no longer have to fill in the “liquids - in - and - out” forms, as they don’t really apply to me; but it was good practice for the future. My late evening bolus of Meropenam was quite uncomfortable and had be done very slowly. I am still reading “Rough Crossings”. It is fascinating and very revealing of early 19th vision - and prejudices.
Monday 20th August 2007
My second week starts with feeling rather dozy after my late getting to bed last night - 3am after four hours of blood transfusion. Yesterday’s difficulties getting blood samples from me are repeated this morning with Veronica having three unsuccessful attempts around 7.30am. This was followed by Genette having one try at 11am before making way for Snr Staff Nurse Arlene who gets blood out of the back of my right thumb! - but painfully. This is hopeless. My veins have gone into retreat! If we had known that I would be hospitalised this long then I would have had a PICC line fitted weeks ago. Unfortunately, this was not foreseen as we were going from day to day in the vain (geddit!) hope that “something would turn up” on the neutrophil front. Now we seem to be stuck here trying - as it were - to get blood out of a stone! Oh well, the power of hindsight! Late morning and I get a visit from Dr. Steve Schey telling me that they have concluded the likely explanation for my stubborn neutrophil count is residual Campath in my blood / bone marrow and that they are thinking a way forward would be to give me a plasma transplant. This requires their taking blood from me, siphoning off the plasma content using a clever machine and replacing it with donor plasma. The idea is that hopefully this will get rid of the excess Campath and give me “clear” plasma in return. He opines that otherwise, I could be here for some time what with my infected thumb. He tells me that Steve Devereux wants to talk things through with me this afternoon. In the afternoon I have visits from Steve Bloomfield from the office and Michael, the volunteer helper. Unfortunately it is a “no show” from Steve Devereux. Perhaps tomorrow. My blood results today are - Wbc: 0.45; Neut: 0.18; Lymph: 0.26; Hbn: 9.6; PLT: 34; CRP: 8.4 - and my weight is 77.5 kgs.
At 11pm Snr Staff Nurse Olivia tries to give me my Meropenam but we find that just flushing the cannula is painful, so that’s yet another 24 hour maximum cannula gone. I am re-cannulated in the back of my left hand by the duty doctor and then have the Meropenam, finishing at 12.30am. - another late night!
Sunday 26th August 2007
I wake with a definite cough this morning and bringing up chesty phlegm. I have more catarrh as well. I am asked to give a sample of sputum. It is green - not so good. I mention this to the two Sarahs; I am checked over and given an all clear for today. My blood sample is taken at the second attempt, helped by the heat pad. It seems that the veins in my right arm are much easier to access than those in my left - and this has been the case for the past few days. Tina arrives at 1pm and stays for three hours. Just before she leaves I get my blood results, which tell me that my neutrophils have gone up again - to 0.54. My full results are - Wbc: 0.94; Neut: 0.54; Lymph: 0.38; Hbn: 9.8; PLT: 51. My weight this morning was 75 kgs again.
Saturday 25th August 2007
My weight is 75 kgs this morning. My blood samples are taken easily after using the heat pad and I have no discomfort with my anti-biotics even though the cannula is in an awkward and slightly painful place. I now have diarrhoea(!) - such that I have to give a sample for analysis. The little plug of congealed blood comes out from the “head” of my infected thumb. I keep it but is of no real interest to the doctors when they come - two Sarahs. But the good news is that my neutrophils have doubled since yesterday. My blood counts are - Wbc: 0.93; Neut: 0.49; Lymph: 0.42; Hbn: 10.8; PLT: 54; CRP: 10.7.
Fr. Luke gives me Holy Communion in the afternoon, which is otherwise spent watching Rugby League and Union through to 7pm. My anti-biotics boluses are quite uncomfortable despite the cannula being only 20 hours old. I am catching up well with my blog entries, bearing in mind how many days I let slip by feeling up to doing it. Despite realising some days ago that I should be doing leg strengthening exercises, I have not got down to doing any yet! So I have decided to put a reminder on my mobile phone for the afternoon and evening and I do six or eight knee bends - at least it is a start. I have also started a cough this afternoon; this on top of an increase in catarrh and nose blowing in recent days.
Friday 24th August 2007
I am awoken at 5.30am so they can have early blood samples. I suggest the heat pad will help - and it does. Staff Nurse Susie has no problem getting a large number of samples. The process is repeated later in the morning when some further samples are required and it works successfully again for Jinky. I am 76 kgs again today. I spend the morning on my blog, before lunch and then Matthew and Charrise both arrive at the same time. It is their anniversary and they are in town for the day and overnight, having dinner at Mon Plaisir and seeing “Joseph”. My blood transfusion is started at 12.30pm. Tina calls me to say that Steve Scott has offered to drive up with her to collect me. Isn’t that great! One of the pharmacists comes by to go through my discharge medications with me. She says with confidence that they will all be with me by 3.30pm. I say that I will believe that when I see it and of course they arrive at 5pm. Fortunately I am not held up because of that as Tina arrives at the same time and we do the final packing. In the meantime I have had a discharge chat with Dr Lara about my temperature not being below 37 for the last 36 hours. I also point out that as I am having the second unit of blood and whilst talking to her I am having a hot flush for half an hour or more. She checks me over and says that I am ok as long as my temperature does not go above 37.4c. Looking ahead I ask if there is a possibility of having the kidney function test, the fitting of the Hickman line and the clinic appointment with Steve Devereux all arranged for the same day.
I then have a very interesting visit from someone from the Hospital’s infection control team to check on the cleanliness of my room. I take the opportunity to mention something that has been bugging me for months, particularly in relation to MRSA. This is that, with the exception of here in the Derek Mitchell Unit, in all my recent experiences of three hospitals and at least six wards - maybe more counting Darenth Valley - I have never seen or heard a member of nursing staff challenge anyone as to whether they have cleaned their hands before visiting a patient - NEVER, EVER! There seems to be a total reliance on visitors - or whoever - knowing they should do it as they enter a ward or being reminded by their reading the advisory notices - which are of varying quality and visibility and can be passed by unseen. As a patient, I have never been told what infection control regime I should adhere to either. I am amazed that nursing staff do not seem to think it is within their responsibilities to “gatekeep” infection control on their wards. This, despite the huge media focus on MRSA and other hospital based infections. So the lady from Infection Control got more than she expected from her visit to me! She explained that her unit ran training for nursing staff on Infection Control and she would feedback my comments into the training they did.
At 6pm Tina is with me, I am packed and ready to go, when I notice that the little plug of dried blood at the core of my infected thumb had popped out and was hanging on by a small piece of tissue, exposing a small hole underneath. I am not happy about this, so I ask that a doctor see it. Fortunately it is Kat who comes and she doesn’t like the look of it, but more importantly notices that my thumb is more inflamed than yesterday. So we made a complete volte face. I am to stay in order to go back on intra-venous anti-biotics! Tina agrees that it is the right thing to do, despite otherwise wanting me to come home. I go downstairs to see and thank Steve for his kindness today and to apologise for the waste of his time this afternoon and evening and they leave for Hurst. I call Daphne and send some text messages to those I had triumphantly told I was coming home. I have to have a new cannula fitted. This does not get done until 11.30pm, at the third painful attempt, when I have one inserted on my right wrist in a rather awkward position. My anti-biotics go in alright and without any pain, but my hand and wrist are uncomfortable all night. I doze on my bed until 2am before tucking down. My blood counts today are - Wbc: 0.56; Neut: 0.23; Lymph: 0.32; Hbn: 8.6; PLT: 42. I do not get a CRP reading on the print out.
Thursday 23rd August 2007
I am up and showered before breakfast, but I have a very uncomfortable time having the anti-biotics through my cannula, which is just over 48 hours old. Time for yet another one. Despite the heat pad Staff Nurse Jinky has no joy getting my blood samples, so Snr. Staff Nurse Malin comes to the rescue fitting a new cannula on my left forearm and getting my blood samples from it. I am blogging at 11.15am. After lunch I am taken to the Nuclear Medicine Unit for a heart scan or “MUGA” to see how strong my heart is. I come out radio active! Tina, Anna and Eva arrive while I am there. We get back to my room, get news that my neutrophils hav gone up a shade to 0.26 and meet up with Steve Devereux, Lara, Kat and a delightful, Professor Duvivier, consultant dermatologist - he of the colourful and flamboyant bow tie! (check title). There ensues a fascinating examination and clinical discussion about my infected thumb, its history and levels of discomfort over the past few weeks. Professor Duvivier is enthusiastic about exploring inside but Steve Devereux is cautious as my low immune system could leave me open for more problems. So it is to be left to see how it progresses. The polite interplay between these two professionals is a joy to witness! Steve then discusses my situation with us and concludes that, with an apparent rising immune system, I can go home. I am to come off intra-venous anti-biotics and on to tablet form, I must watch out for any adverse change in the condition of my thumb and have twice weekly blood tests at Brighton. The transplant can go ahead in about four or five weeks time with the “C mismatch” donor initially identified a couple of months ago. The Hickman line fitting can be put back to nearer the transplant time, I have to have a kidney function check some time in the next 4 weeks and also to see him in his clinic to talk through the detail of the transplant. So it is great news!
My blood results today are - Wbc: 0.51; Neut: 0.26; Lymph: 0.24; Hbn: 8.6; PLT: 39; and CRP: 10.5. My weight is 76 kgs. With my Hbn count at 8.6, I am also to have 2 units of blood. I am later told that there is a new policy that blood can only be given between 9am and 5pm. Considering how, in my past experience, I always seem to be having blood through to the late the evening, I will believe that when I see it! I have a dozy evening.
Wednesday 22nd August 2007
My early morning Merapenam bolus and attendant flushes are uncomfortable again.
However, when it comes to taking my regular blood sample and the 500 ml of blood for Steve Devereux’s research, Staff Nurse Marianita uses the heat pad on my arm and I bleed from the crook of my arm readily and painlessly- at last! My weight is back to 77 kgs this morning, confirmed by an accurate machine later today. At 11am I have a lung function check. It takes more than an hour overall and seems to go pretty well. The analysed results have to be worked out before I find out what they are. Cold soup and lukewarm dinner follow. I hate this 12 midday institutional lunchtime! I hear that Steve Devereux was on the ward and looking for me while I was out! - but I am seen by Dr. Kat anyway. She tells me I have an appointment for the fitting of a Hickman line next Monday and using my time here to have several of the necessary checks, etc. done that are needed in preparation for the transplant, so saving days when the time comes for it. She also tells me the good news that my neutrophils today have gone up to 0.24! This is great news as it is the first time the neutrophils have come off the floor since 6th August -over two weeks ago. I celebrate in the evening with a Guinness while watching England lose 2-1 to Germany at football. I have a visit from Tessa after work which was nice and then I show Staff Nurse Marianita how blunt the needles on the GCSF packs are by a practical demonstration. She agrees with me and will feed this back to the pharmacists. My full blood results today are: Wbc: 0.51; Neut: 0.24; Lymph: 0.25; Hbn: 9.4; PLT: 36; and CRP: 11.3.
Tuesday 21st August 2007
More problems getting blood from me at 7.30am and after one try, it is aborted and not attempted again today. My weight today is up at 79 kgs and I notice I still have plenty of oedema in my legs. I am seen by Dr. Lara after lunch and get the latest thoughts on the possible next moves. We cover the difficulties getting blood samples from me, cannula lifespan, plasma exchange and a femoral line (now less likely), installing a PICC line (unlikely) and installing a Hickman line (most likely) ahead of its need for the bone marrow transplant. So, provided it can be done really soon, the Hickman line would be the answer to both problems of obtaining blood samples and 24 hour cannula lifespans. It transpires that it is not imperative to have blood samples every day and that every other day will suffice. Lara mentions a request from Dr. Devereux for a blood sample for his research work. With the likelihood of my having a residue of Campath in my blood, he wants to use it to help set up a method of measuring and tracking amounts of Campath in the blood over time. She reiterates that he hopes to see me as soon as he can. Tina arrives just in time to come with me while I have an x-ray - a routine procedure for all patients on my ward today.
I contact Dave Lloyd in Sussex Police Welfare giving him some idea about likely forthcoming travel costs for Tina when I am up here with the bone marrow transplant. He will check on Welfare policy and make an application on our behalf. Having contributed for 39 years, it seems reasonable to ask for something back. It will certainly help! I am told that I no longer have to fill in the “liquids - in - and - out” forms, as they don’t really apply to me; but it was good practice for the future. My late evening bolus of Meropenam was quite uncomfortable and had be done very slowly. I am still reading “Rough Crossings”. It is fascinating and very revealing of early 19th vision - and prejudices.
Monday 20th August 2007
My second week starts with feeling rather dozy after my late getting to bed last night - 3am after four hours of blood transfusion. Yesterday’s difficulties getting blood samples from me are repeated this morning with Veronica having three unsuccessful attempts around 7.30am. This was followed by Genette having one try at 11am before making way for Snr Staff Nurse Arlene who gets blood out of the back of my right thumb! - but painfully. This is hopeless. My veins have gone into retreat! If we had known that I would be hospitalised this long then I would have had a PICC line fitted weeks ago. Unfortunately, this was not foreseen as we were going from day to day in the vain (geddit!) hope that “something would turn up” on the neutrophil front. Now we seem to be stuck here trying - as it were - to get blood out of a stone! Oh well, the power of hindsight! Late morning and I get a visit from Dr. Steve Schey telling me that they have concluded the likely explanation for my stubborn neutrophil count is residual Campath in my blood / bone marrow and that they are thinking a way forward would be to give me a plasma transplant. This requires their taking blood from me, siphoning off the plasma content using a clever machine and replacing it with donor plasma. The idea is that hopefully this will get rid of the excess Campath and give me “clear” plasma in return. He opines that otherwise, I could be here for some time what with my infected thumb. He tells me that Steve Devereux wants to talk things through with me this afternoon. In the afternoon I have visits from Steve Bloomfield from the office and Michael, the volunteer helper. Unfortunately it is a “no show” from Steve Devereux. Perhaps tomorrow. My blood results today are - Wbc: 0.45; Neut: 0.18; Lymph: 0.26; Hbn: 9.6; PLT: 34; CRP: 8.4 - and my weight is 77.5 kgs.
At 11pm Snr Staff Nurse Olivia tries to give me my Meropenam but we find that just flushing the cannula is painful, so that’s yet another 24 hour maximum cannula gone. I am re-cannulated in the back of my left hand by the duty doctor and then have the Meropenam, finishing at 12.30am. - another late night!
Transferred to Kings
Monday 13th to Sunday 19th August 2007
Sunday 19th August 2007
I am 77 kgs yet again today but notice that the fluid in my legs is much reduced. I realise that my only exercise is going down to the shop in the morning to get my newspaper. I resolve that I must do some leg strengthening exercises as my thighs and calves still feel weak. Tina is here at 1pm for a few hours and while here sees the attempts to take a blood sample for type matching as I need to be transfused. Eventually a sample is taken at the sixth attempt - painfully from the inside of the wrist. I am beginning to feel like a pin cushion! My blood results today are - Wbc: 0.4; Neut: 0.13;Lymph: 0.26; Hbn: 7.8; PLT: 37 - hence the need for the transfusion. Father Luke comes to give me Holy Communion and at 7.15pm Jane and Richard turn up for a visit. Somehow they contrived to get here via the south circular, which took them ages. They have never been any good at navigation! - but it was nice to see them. At 9.30pm I am started on the first of the two units of blood I am to have, but my cannula - once again - is not destined to last more than 24 hours. I have to be re-cannulated on the inside of my right arm and it seems to work at first but my vein aches throughout the second unit. I am getting very thin veins! My transfusion finishes at 2.30am and I get to bed at 3am.
Saturday 18th August 2007
I am 77 kgs again today, but I think I still have fluid in my legs to get rid of. I am seen by (Dr) Emma who is pleased with how things are going, despite my neutrophil count being pretty abysmal. My full results are - Wbc: 0.4; Neut: 0.12; Lymph: 0.26;Hbn: 8.5; PLT: 37. The consultants have discussed whether they could give me anything else to aid my neutrophil recovery or reduce the impact of the Campath. I should hear more of that soon. I get a real surprise at lunchtime when, completely out of the blue, Daphne walks in to visit me. It is fantastic! She had to be up about 4.30am this morning to get to Bangor to catch the train. I have to confess to being close to a tear! She is able to stay for three hours before leaving to get her train from Euston. Apparently Tina knew she was coming but kept it a secret. Daphne even text messaged me from the entrance lobby downstairs in reply to my last text to her to make the surprise even greater! That gave me a great lift for the rest of the day. I learn from Michael, the ward volunteer, that the Davidson ward refit will include the provision of wifi. Now that will be good! Yet another cannula doesn’t last and I have another inserted, this time on the back of my left hand - ouch!!
Friday 17th August 2007
My weight is down 2 kgs to 77 kgs this morning and my breakfast medicine cocktail has been reduced from 8 to 2 items. I have excellent news from Lara that the macrophages are no longer in hyper-active mode. The bone marrow is creating red cells, platelets (a bit), but no neutrophils yet and there is no CLL in there. They have still to examine the bone biopsy - or trephine - to confirm no CLL is lurking on the inside of the bone. Steve Devereux thinks that the neutrophils are being suppressed by a residue of Campath in my body. I am told that Campath can remain in the body for ten weeks after the cessation of its use - potentially another six weeks. They want to keep me here to continue giving me anti-biotics for my infected thumb and the thinking is to have the transplant as soon as possible - maybe in two to three weeks. I conclude from this that the timeframe for the transplant is really being dictated by my infected thumb, in that until it is cleared up it is attracting what neutrophils I do have to deal with the infection there. That, combined with the Campath effect stubbornly holding down neutrophil recovery as well, I am wondering what will come first - neutrophil recovery or thumb infection clear-up and how long will this take? Tina is here at 1.30pm for a couple of hours and I then send out “good news” text messages. My blood results today are still not good - Wbc: 0.3; Neut: 0.1; Lymph: 0.19; Hbn: 8.7; PLT: 35; CRP: 14. I am self injecting the GCSF in my thighs in preference to the rather painful injections by the nurses in my upper arms. I am finding the food to be not so good as I remember it from February and the choices more limited compared with the RSCH. It doesn’t take long to run through the options and with the choice of puddings, for example, just two - with no ice cream (!) - it is soon going to get boring.
Thursday 16th August 2007
I am awake at 6.20am for the taking of a blood sample and my anti-biotics. My weight is 79 kgs - no doubt all about excess fluid. I am now entrusted with my own Itroconozole, which I can keeping the fridge to make it as palatable as possible. With the food Tina brought me yesterday, I have a better breakfast this morning - cornflakes, yogurt, honey and cut peach. Since being here I have felt a bit like a prisoner in a cell and I do not feel I have the same freedom of movement I enjoyed down at Brighton. This comes mainly from having to have my door shut all the time. However, I am beginning to feel my feet now and I am able to escape from the ward at 10am to walk down to the shop and buy a newspaper. I have to wear a mask, which I must wear at any time that I leave my room; ward rules - understandable for transplant patients. I still have a lot of fluid on my legs, very noticeable when climbing back up the stairs from the ground floor. Later in the morning I get a visit from Jo. She is in the process of vacating their house in Fulham with the removal / container people in today. She will be taking Jules and Jane with her to Peter and Suzanne’s tomorrow and they fly out to HK next Wednesday. It is lovely to see her before she goes. I have a CT Scan in the afternoon and am then seen by consultant Dr. Steve Schey - pronounced “Sky” - plus Drs Lara and Kat. The current view is that we should watch and wait until anything is identified that needs a response, rather than attempt any further treatment - which might be counter-productive at this stage. I have a visit from Tessa at 5pm and then Father Luke - the “resident” Catholic chaplain - at 7.30pm, as I had requested contact with a priest.
Wednesday 15th August 2007
I have to get the hang of a different regime here, so I wait for things to happen and then I can fit my routine - such as it ever is(!) - into the one in the ward. Breakfast is pretty basic and I just have toast and a very weak tea. We will improve on that tomorrow! I see Dr Lara this morning. Good to see a familiar face from February. My Furosimide dosage is doubled to help sort out the fluid in my legs. I am still amazed how that has happened. I am also introduced to a ward requirement of measuring and recording hourly liquid intake and outtake - with a plastic measuring jug supplied for the latter purpose! Apparently this will be even more important when I am here for my transplant. I get some text messages out letting friends and family know I am up here now. Tina and Matthew arrive at 12.30pm for a visit and have to wear a plastic apron and go through several hand washing rituals. Now that is a very reassuring practice, but not surprising considering the state of health of patients on this ward, struggling with post transplant disease, etc. It seems that, no sooner has Tina and Matthew sat down, the door bursts open and in stomps Tim Godwin, complete with plastic apron - just about fitting him! What a great surprise and how nice. He must have got my text message, checked his diary, sorted out his desk and come straight over from the Yard. We have great chats for about half an hour and then off he dashes. Tina and Matthew stay until about 3.15pm, by which time I have seen Lara again and discuss the need for another bone marrow sample this afternoon. Because I have had lunch I cannot have a proper sedative, but I am given it in tablet form instead. Lara also says that it is difficult to tell yet whether the Vigam has been effective; they also want the sample in order to check for any other infections I may have which could be causing the macrophages to be so overactive. The RSCH slides of last week’s bone marrow sample have not arrived yet. I have my sample taken about 4pm but the sedative does not seem to have any effect, albeit it is not as painful an experience as it has sometimes been. My blood results are - Wbc: 0.61; Neut: 0.14; Lymph: 0.45; Hbn: 9.9; PLT: 32. My weight this morning is 79 kgs.
Tuesday 14th August 2007
I am 78 kgs today - two kgs up from yesterday! I have my early morning anti-biotics and find the cannula is painful just 36 hours after being inserted. I am recannulated later in the morning. I get a morning visit from Jim and he witnesses the fiddly business of having six small bottles of Vigam on the intra-venous drip. My blood results today are -Wbc: 0.4; Neut: 0.0; Lymph: 0.3; Hbn: 9.5; PLT: 25; and CRP: 17. At 2.40pm I am told that there is a bed free at Kings and that I have 30 minutes to pack as a car will be ready to take me there. This is soon changed to an hour as it is decided I should travel in a paramedic ambulance. Not quite sure why, but the crew turn up with a stretcher for me to lie on! We leave the RSCH at 4pm and have a horrendous journey, with the M25 and M23 at standstills due to a turned over lorry. Our maximum two hour journey takes three and a half hours! I arrive at the David Mitchell Unit with enormous fat legs, full of fluid. Did the journey really do that? I certainly don’t recall my legs being up earlier today, although I had put on weight since yesterday. This ward is the specialist ward where I will have my transplant. There is a strict regime for patients and visitors and the first thing I notice is that I don’t feel I can wander about with the freedom I have had in the Haematology ward at the RSCH. I have my own room - no. 12 - but unsurprisingly it is not so spacious as my recent experience. The bathroom certainly is no match, except the floor cannot flood! On the plus side, I have a small fridge, good enough for small drinks, the water jug, pots of yogurt and a few bottles of Guinness. The view is non-existent. I look straight out at the side walls of Davidson ward, about 12 feet away together with its scaffolding, as it is being gutted and completely refurbished. I have blood samples taken at 10.15pm and am checked over by the night duty doctor, Rachel, whom I seem to remember from my time on Davidson ward in February. I think it was Rachel who was very good with the cannula. I have my antibiotics and settle down for the night at midnight.
Monday 13th August 2007
There are no changes in my overall situation although my thumb appears to be slightly better - or is that wishful thinking? My weight is 76 kgs again and my blood results are -Wbc: 0.5; Neut:.0.1; Lymph: 0.4; Hbn: 9.9; PLT: 24; and CRP: 23. We are still waiting for news from Kings on bed availability, but nothing transpires. It is my fifth day on Vigam out of the six days of treatment required and I am wondering what a move to Kings will bring if the treatment for the macrophages has finished. Still I guess it would be good for them to see the problem at first hand. Tina is joined by Anna, Nick and Eva as my only visitors today.
Sunday 19th August 2007
I am 77 kgs yet again today but notice that the fluid in my legs is much reduced. I realise that my only exercise is going down to the shop in the morning to get my newspaper. I resolve that I must do some leg strengthening exercises as my thighs and calves still feel weak. Tina is here at 1pm for a few hours and while here sees the attempts to take a blood sample for type matching as I need to be transfused. Eventually a sample is taken at the sixth attempt - painfully from the inside of the wrist. I am beginning to feel like a pin cushion! My blood results today are - Wbc: 0.4; Neut: 0.13;Lymph: 0.26; Hbn: 7.8; PLT: 37 - hence the need for the transfusion. Father Luke comes to give me Holy Communion and at 7.15pm Jane and Richard turn up for a visit. Somehow they contrived to get here via the south circular, which took them ages. They have never been any good at navigation! - but it was nice to see them. At 9.30pm I am started on the first of the two units of blood I am to have, but my cannula - once again - is not destined to last more than 24 hours. I have to be re-cannulated on the inside of my right arm and it seems to work at first but my vein aches throughout the second unit. I am getting very thin veins! My transfusion finishes at 2.30am and I get to bed at 3am.
Saturday 18th August 2007
I am 77 kgs again today, but I think I still have fluid in my legs to get rid of. I am seen by (Dr) Emma who is pleased with how things are going, despite my neutrophil count being pretty abysmal. My full results are - Wbc: 0.4; Neut: 0.12; Lymph: 0.26;Hbn: 8.5; PLT: 37. The consultants have discussed whether they could give me anything else to aid my neutrophil recovery or reduce the impact of the Campath. I should hear more of that soon. I get a real surprise at lunchtime when, completely out of the blue, Daphne walks in to visit me. It is fantastic! She had to be up about 4.30am this morning to get to Bangor to catch the train. I have to confess to being close to a tear! She is able to stay for three hours before leaving to get her train from Euston. Apparently Tina knew she was coming but kept it a secret. Daphne even text messaged me from the entrance lobby downstairs in reply to my last text to her to make the surprise even greater! That gave me a great lift for the rest of the day. I learn from Michael, the ward volunteer, that the Davidson ward refit will include the provision of wifi. Now that will be good! Yet another cannula doesn’t last and I have another inserted, this time on the back of my left hand - ouch!!
Friday 17th August 2007
My weight is down 2 kgs to 77 kgs this morning and my breakfast medicine cocktail has been reduced from 8 to 2 items. I have excellent news from Lara that the macrophages are no longer in hyper-active mode. The bone marrow is creating red cells, platelets (a bit), but no neutrophils yet and there is no CLL in there. They have still to examine the bone biopsy - or trephine - to confirm no CLL is lurking on the inside of the bone. Steve Devereux thinks that the neutrophils are being suppressed by a residue of Campath in my body. I am told that Campath can remain in the body for ten weeks after the cessation of its use - potentially another six weeks. They want to keep me here to continue giving me anti-biotics for my infected thumb and the thinking is to have the transplant as soon as possible - maybe in two to three weeks. I conclude from this that the timeframe for the transplant is really being dictated by my infected thumb, in that until it is cleared up it is attracting what neutrophils I do have to deal with the infection there. That, combined with the Campath effect stubbornly holding down neutrophil recovery as well, I am wondering what will come first - neutrophil recovery or thumb infection clear-up and how long will this take? Tina is here at 1.30pm for a couple of hours and I then send out “good news” text messages. My blood results today are still not good - Wbc: 0.3; Neut: 0.1; Lymph: 0.19; Hbn: 8.7; PLT: 35; CRP: 14. I am self injecting the GCSF in my thighs in preference to the rather painful injections by the nurses in my upper arms. I am finding the food to be not so good as I remember it from February and the choices more limited compared with the RSCH. It doesn’t take long to run through the options and with the choice of puddings, for example, just two - with no ice cream (!) - it is soon going to get boring.
Thursday 16th August 2007
I am awake at 6.20am for the taking of a blood sample and my anti-biotics. My weight is 79 kgs - no doubt all about excess fluid. I am now entrusted with my own Itroconozole, which I can keeping the fridge to make it as palatable as possible. With the food Tina brought me yesterday, I have a better breakfast this morning - cornflakes, yogurt, honey and cut peach. Since being here I have felt a bit like a prisoner in a cell and I do not feel I have the same freedom of movement I enjoyed down at Brighton. This comes mainly from having to have my door shut all the time. However, I am beginning to feel my feet now and I am able to escape from the ward at 10am to walk down to the shop and buy a newspaper. I have to wear a mask, which I must wear at any time that I leave my room; ward rules - understandable for transplant patients. I still have a lot of fluid on my legs, very noticeable when climbing back up the stairs from the ground floor. Later in the morning I get a visit from Jo. She is in the process of vacating their house in Fulham with the removal / container people in today. She will be taking Jules and Jane with her to Peter and Suzanne’s tomorrow and they fly out to HK next Wednesday. It is lovely to see her before she goes. I have a CT Scan in the afternoon and am then seen by consultant Dr. Steve Schey - pronounced “Sky” - plus Drs Lara and Kat. The current view is that we should watch and wait until anything is identified that needs a response, rather than attempt any further treatment - which might be counter-productive at this stage. I have a visit from Tessa at 5pm and then Father Luke - the “resident” Catholic chaplain - at 7.30pm, as I had requested contact with a priest.
Wednesday 15th August 2007
I have to get the hang of a different regime here, so I wait for things to happen and then I can fit my routine - such as it ever is(!) - into the one in the ward. Breakfast is pretty basic and I just have toast and a very weak tea. We will improve on that tomorrow! I see Dr Lara this morning. Good to see a familiar face from February. My Furosimide dosage is doubled to help sort out the fluid in my legs. I am still amazed how that has happened. I am also introduced to a ward requirement of measuring and recording hourly liquid intake and outtake - with a plastic measuring jug supplied for the latter purpose! Apparently this will be even more important when I am here for my transplant. I get some text messages out letting friends and family know I am up here now. Tina and Matthew arrive at 12.30pm for a visit and have to wear a plastic apron and go through several hand washing rituals. Now that is a very reassuring practice, but not surprising considering the state of health of patients on this ward, struggling with post transplant disease, etc. It seems that, no sooner has Tina and Matthew sat down, the door bursts open and in stomps Tim Godwin, complete with plastic apron - just about fitting him! What a great surprise and how nice. He must have got my text message, checked his diary, sorted out his desk and come straight over from the Yard. We have great chats for about half an hour and then off he dashes. Tina and Matthew stay until about 3.15pm, by which time I have seen Lara again and discuss the need for another bone marrow sample this afternoon. Because I have had lunch I cannot have a proper sedative, but I am given it in tablet form instead. Lara also says that it is difficult to tell yet whether the Vigam has been effective; they also want the sample in order to check for any other infections I may have which could be causing the macrophages to be so overactive. The RSCH slides of last week’s bone marrow sample have not arrived yet. I have my sample taken about 4pm but the sedative does not seem to have any effect, albeit it is not as painful an experience as it has sometimes been. My blood results are - Wbc: 0.61; Neut: 0.14; Lymph: 0.45; Hbn: 9.9; PLT: 32. My weight this morning is 79 kgs.
Tuesday 14th August 2007
I am 78 kgs today - two kgs up from yesterday! I have my early morning anti-biotics and find the cannula is painful just 36 hours after being inserted. I am recannulated later in the morning. I get a morning visit from Jim and he witnesses the fiddly business of having six small bottles of Vigam on the intra-venous drip. My blood results today are -Wbc: 0.4; Neut: 0.0; Lymph: 0.3; Hbn: 9.5; PLT: 25; and CRP: 17. At 2.40pm I am told that there is a bed free at Kings and that I have 30 minutes to pack as a car will be ready to take me there. This is soon changed to an hour as it is decided I should travel in a paramedic ambulance. Not quite sure why, but the crew turn up with a stretcher for me to lie on! We leave the RSCH at 4pm and have a horrendous journey, with the M25 and M23 at standstills due to a turned over lorry. Our maximum two hour journey takes three and a half hours! I arrive at the David Mitchell Unit with enormous fat legs, full of fluid. Did the journey really do that? I certainly don’t recall my legs being up earlier today, although I had put on weight since yesterday. This ward is the specialist ward where I will have my transplant. There is a strict regime for patients and visitors and the first thing I notice is that I don’t feel I can wander about with the freedom I have had in the Haematology ward at the RSCH. I have my own room - no. 12 - but unsurprisingly it is not so spacious as my recent experience. The bathroom certainly is no match, except the floor cannot flood! On the plus side, I have a small fridge, good enough for small drinks, the water jug, pots of yogurt and a few bottles of Guinness. The view is non-existent. I look straight out at the side walls of Davidson ward, about 12 feet away together with its scaffolding, as it is being gutted and completely refurbished. I have blood samples taken at 10.15pm and am checked over by the night duty doctor, Rachel, whom I seem to remember from my time on Davidson ward in February. I think it was Rachel who was very good with the cannula. I have my antibiotics and settle down for the night at midnight.
Monday 13th August 2007
There are no changes in my overall situation although my thumb appears to be slightly better - or is that wishful thinking? My weight is 76 kgs again and my blood results are -Wbc: 0.5; Neut:.0.1; Lymph: 0.4; Hbn: 9.9; PLT: 24; and CRP: 23. We are still waiting for news from Kings on bed availability, but nothing transpires. It is my fifth day on Vigam out of the six days of treatment required and I am wondering what a move to Kings will bring if the treatment for the macrophages has finished. Still I guess it would be good for them to see the problem at first hand. Tina is joined by Anna, Nick and Eva as my only visitors today.
Still in Hospital - And it’s Week 3
Monday 30th July to Sunday 12th August 2007
Sunday 12th August 2007
A quiet day. Peter’s birthday, the start of the grouse shooting season (as ever!) and we also moved to Hurst 26 years ago today. My weight is 76 kgs, another move upwards. I see Vicky Tindall and we agree that my humb has swollen a bit more. I have a pre-lunch Guinness with Tina and spend the afternoon typing a long overdue update email to Mavis. Unfortunately after well over an hour of painstaking typing, my screen goes dead and I lose the whole email. l had inadvertently not connected to the mains and, concentrating so much on my typing, I have forgotten to keep an eye on the battery icon. So I had to start all over again. But first it was necessary to have a calming down walk around the unit to let the steam out of me. I was livid with myself. My next blood pressure check shows me “high” - and no wonder! My blood results today are - Wbc: 0.5; Neuts and Lymphs - not separately measured; Hbn: 10.5; PLT: 28; and CRP: 29. I am in bed at midnight.
Saturday 11th August 2007
I am 74.5 kgs this morning - an increase of one and a half kilos on yesterday - and signs that my diet together with the Fortijuices are having a positive impact. I have been trying to have one mid morning, mid afternoon and then mid evening. However hard I try I never manage to prise my morning one from the nurses until 11am at the earliest, taking away my appetite for lunch, which is always at 12md - 12.10pm at the latest. This is after a breakfast that I never seem to get until about 8.30am - and which I make very filling with my yogurt, honey, cereal and fresh cut fruit, plus toast. I find out that the food team’s routine delivery ritual is to start at the far end of oncology for breakfast and end with me. But for lunch they start with me and end up at the far end of oncology. Hence the relatively short morning. Why do they do this? I made some long overdue phone calls to Mary Roberts, Nicola Chittenden and Steve Scott. I have an x-ray on my thumb to check that there is no infection gone into the bone, which it hasn’t. At the same time it is confirmed, what I have suspected for some years, that I have some arthritic degeneration in the base joint of the thumb. Nothing new there then! - but helpful nonetheless. Tina visits late afternoon, followed by Anna, Nick and Eva. I have another new cannula fitted in the evening ahead of my Vigam and anti-biotics. I hear there are no beds at Kings yet for tomorrow. Perhaps Monday or Tuesday there will be one. My blood results today are - Wbc: 0.9; Neut: 0.0.; Lymph: 0.8; Hbn: 11.1; PLT: 36; and
CRP: 43.
Friday 10th August 2007
My weight today is 73 kgs - another steady increase. I see Tim Corbett this morning. He has detected excessive macrophage activity in my bone marrow - which is otherwise pretty empty as previously stated. These macrophages are the scavengers in the bone marrow and they get rid of dead cells and the dross in the bone marrow. However they appear to have go beyond their remit and are gobbling up the neutrophils. My analogy is that they are the road sweepers in the bone marrow but have taken it into their heads to go down the street breaking all the windows! He believes this could have been caused by the recent CMV re-activation and the Valganciclovir treatment for it. The clinical term for for the syndrome is Haemophagocytosis - now there’s a mouthful! The treatment suggested by Kings is doses of immuno-globulin (Vigam) given intra-venously. Kings have suggested that I should be transferred up to them so that can keep an eye on me, given that this is a bit of a complication on top of my severe neutropenia. Besides these macrophages have to be back under control before my transplant could go ahead. In the overall scheme of things, my infected thumb appears to be just a sideshow. Having said that, the small scab that had formed over its head has now been washed off. Tina visits at 11.15am and an hour later my blood transfusions start again, with two more units today, making four in all. I get visits from Mia Morris and Linda Bell after lunch. My anti-biotic, Tazocin, is replaced by Meropenam together with Teicoplenin. My Vigam starts at 8pm but is a really fiddly process as it only comes in small bottles and I have to have six of them as one dose, each one taking 30 minutes. My blood counts today are - Wbc: 0.4; Neut: 0.1; Hbn: 9.8; PLT: 35; and CRP: 46. I doze on the bed until 12.50am until tucking down.
Thursday 9th August 2007
It’s Eva’s first birthday! - and as it is Thursday I see Paul Hill today. He tells me that the bone marrow is “empty” - no sign of CLL (good), but no sign of neutrophils either (not so good). Paul believes that Steve Devereux will want to bring forward my transplant and not give me the six weeks break we had planned because of my low immune system. I am due to see Steve Devereux next Friday at his clinic, so I would think more will be revealed then. I am now trusted with the Itroconozole myself as the nurses keep forgetting the timings! As is the norm in hospitals, ward orderlies have to bring a jug of water at breakfast time to every patient, but it is never cold enough for me at the start and gets warmer as the day goes by. So the discovery at last that there is a chilled water machine in the entry lobby to the floor is a great find. At last I can have drinkable cold water! My mouth is now much better and I decide that I don’t need to use the Difflam mouthwash any more. I have a visit from Steve Pitt and then Sr. Peter for Holy Communion. Tina is in to see me about 4.45pm after seeing Nicola Worster, the Haemotology Nurse Specialist, for a helpful chat. My weight today has gone up to 72 kgs and my blood results are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 8.4; PLT: 41; CRP: 70. My haemoglobin level means I am in need of a blood transfusion - four units in fact - and I get the first two units this evening.
Wednesday 8th August 2007
It is a big day for visitors - Hilda and Barry, Bill Swallow, Michel and then Erik and Heather. My 7pm Tazocin is very painful, so I am recannulated after only 24 hours. Tina has a great day in London with Anna and Charrise - a late birthday present. My thumb is changing in appearance, with the crusty head flaking off to leave a very small hole. It is still swollen, red and very tender. I am 71 kgs again today. My blood counts are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 9.1; PLT: 54; and CRP: 74. The CRP reading is a big increase from yesterday and - I guess - reflects the level of infection in my thumb.
Tuesday 7th August 2007
I am 71 kgs today, so perhaps the Fortijuice is starting to work? I see Tim Corbett at 9.30am. He surmises that any neutrophils being produced are going to fight the infection in my thumb and consequently prescribes intra-veinous anti-biotics Tazocin and Teicoplanin to deal with it. He also replaces Omeprazole with Ramitodine, as the former can have immune system suppressing side effects. I am to be here for another 5 days at least to see how this treatment progresses. My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.5; Hbn: 8.4; PLT: 57; and CRP: 33. I am cannulated and have my first doses of Tazocin and Teicoplanin and then go for my Pentamidine nebulizer. This is followed by the taking of a bone marrow sample under a sedative. I hardly knew a thing, wake an hour or so later and doze for the rest of the after. I find out later that I was awake during the whole procedure, even discussing what is going on with Vicki Tindall and the nurses. The effect of the sedative is not to put the patient to sleep, but to wipe out the memory of what is being experienced. How does that happen? I don’t know but it certainly works! I send a text message out to my “health update network” of family and friends and get lots of replies including a great one from Tim Godwin, on holiday in Switzerland.
Monday 6th August 2007
Ros Johnston tells me that my white cell count is 1.3 and we are waiting for the detailed breakdown, which is subject of a manual count. If I have 0.4 neutrophils again I can go! But this is a hopelessly false dawn, because when I eventually get the breakdown - not until 6pm(!) - my neutrophils are back down to 0.1 - damn it! On top of that the white cell count is actually down as well, so where 1.3 came from - who knows. She says that my thumb needs looking at in a few days if I am discharged and may need lancing - ouch!! I have visits from Sarah and Paul and Mia Morris ahead of Tina’s coming at her usual time. My full blood results are - Wbc: 1.0; Neut: 0.1; Lymph: 0.8; Hbn: 10.3; PLT: 73; and CRP: 31. My weight today is still 70 kgs. It has been a fairly tense day waiting for, what I had hoped would be, a successful result, so - in the immortal words of the football team captain losing by a dodgy penalty - I was “gutted”. Where do we go from here? On the positive side, however, my mouth seems to be getting a bit better. I spend the evening reading.
Sunday 12th August 2007
A quiet day. Peter’s birthday, the start of the grouse shooting season (as ever!) and we also moved to Hurst 26 years ago today. My weight is 76 kgs, another move upwards. I see Vicky Tindall and we agree that my humb has swollen a bit more. I have a pre-lunch Guinness with Tina and spend the afternoon typing a long overdue update email to Mavis. Unfortunately after well over an hour of painstaking typing, my screen goes dead and I lose the whole email. l had inadvertently not connected to the mains and, concentrating so much on my typing, I have forgotten to keep an eye on the battery icon. So I had to start all over again. But first it was necessary to have a calming down walk around the unit to let the steam out of me. I was livid with myself. My next blood pressure check shows me “high” - and no wonder! My blood results today are - Wbc: 0.5; Neuts and Lymphs - not separately measured; Hbn: 10.5; PLT: 28; and CRP: 29. I am in bed at midnight.
Saturday 11th August 2007
I am 74.5 kgs this morning - an increase of one and a half kilos on yesterday - and signs that my diet together with the Fortijuices are having a positive impact. I have been trying to have one mid morning, mid afternoon and then mid evening. However hard I try I never manage to prise my morning one from the nurses until 11am at the earliest, taking away my appetite for lunch, which is always at 12md - 12.10pm at the latest. This is after a breakfast that I never seem to get until about 8.30am - and which I make very filling with my yogurt, honey, cereal and fresh cut fruit, plus toast. I find out that the food team’s routine delivery ritual is to start at the far end of oncology for breakfast and end with me. But for lunch they start with me and end up at the far end of oncology. Hence the relatively short morning. Why do they do this? I made some long overdue phone calls to Mary Roberts, Nicola Chittenden and Steve Scott. I have an x-ray on my thumb to check that there is no infection gone into the bone, which it hasn’t. At the same time it is confirmed, what I have suspected for some years, that I have some arthritic degeneration in the base joint of the thumb. Nothing new there then! - but helpful nonetheless. Tina visits late afternoon, followed by Anna, Nick and Eva. I have another new cannula fitted in the evening ahead of my Vigam and anti-biotics. I hear there are no beds at Kings yet for tomorrow. Perhaps Monday or Tuesday there will be one. My blood results today are - Wbc: 0.9; Neut: 0.0.; Lymph: 0.8; Hbn: 11.1; PLT: 36; and
CRP: 43.
Friday 10th August 2007
My weight today is 73 kgs - another steady increase. I see Tim Corbett this morning. He has detected excessive macrophage activity in my bone marrow - which is otherwise pretty empty as previously stated. These macrophages are the scavengers in the bone marrow and they get rid of dead cells and the dross in the bone marrow. However they appear to have go beyond their remit and are gobbling up the neutrophils. My analogy is that they are the road sweepers in the bone marrow but have taken it into their heads to go down the street breaking all the windows! He believes this could have been caused by the recent CMV re-activation and the Valganciclovir treatment for it. The clinical term for for the syndrome is Haemophagocytosis - now there’s a mouthful! The treatment suggested by Kings is doses of immuno-globulin (Vigam) given intra-venously. Kings have suggested that I should be transferred up to them so that can keep an eye on me, given that this is a bit of a complication on top of my severe neutropenia. Besides these macrophages have to be back under control before my transplant could go ahead. In the overall scheme of things, my infected thumb appears to be just a sideshow. Having said that, the small scab that had formed over its head has now been washed off. Tina visits at 11.15am and an hour later my blood transfusions start again, with two more units today, making four in all. I get visits from Mia Morris and Linda Bell after lunch. My anti-biotic, Tazocin, is replaced by Meropenam together with Teicoplenin. My Vigam starts at 8pm but is a really fiddly process as it only comes in small bottles and I have to have six of them as one dose, each one taking 30 minutes. My blood counts today are - Wbc: 0.4; Neut: 0.1; Hbn: 9.8; PLT: 35; and CRP: 46. I doze on the bed until 12.50am until tucking down.
Thursday 9th August 2007
It’s Eva’s first birthday! - and as it is Thursday I see Paul Hill today. He tells me that the bone marrow is “empty” - no sign of CLL (good), but no sign of neutrophils either (not so good). Paul believes that Steve Devereux will want to bring forward my transplant and not give me the six weeks break we had planned because of my low immune system. I am due to see Steve Devereux next Friday at his clinic, so I would think more will be revealed then. I am now trusted with the Itroconozole myself as the nurses keep forgetting the timings! As is the norm in hospitals, ward orderlies have to bring a jug of water at breakfast time to every patient, but it is never cold enough for me at the start and gets warmer as the day goes by. So the discovery at last that there is a chilled water machine in the entry lobby to the floor is a great find. At last I can have drinkable cold water! My mouth is now much better and I decide that I don’t need to use the Difflam mouthwash any more. I have a visit from Steve Pitt and then Sr. Peter for Holy Communion. Tina is in to see me about 4.45pm after seeing Nicola Worster, the Haemotology Nurse Specialist, for a helpful chat. My weight today has gone up to 72 kgs and my blood results are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 8.4; PLT: 41; CRP: 70. My haemoglobin level means I am in need of a blood transfusion - four units in fact - and I get the first two units this evening.
Wednesday 8th August 2007
It is a big day for visitors - Hilda and Barry, Bill Swallow, Michel and then Erik and Heather. My 7pm Tazocin is very painful, so I am recannulated after only 24 hours. Tina has a great day in London with Anna and Charrise - a late birthday present. My thumb is changing in appearance, with the crusty head flaking off to leave a very small hole. It is still swollen, red and very tender. I am 71 kgs again today. My blood counts are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 9.1; PLT: 54; and CRP: 74. The CRP reading is a big increase from yesterday and - I guess - reflects the level of infection in my thumb.
Tuesday 7th August 2007
I am 71 kgs today, so perhaps the Fortijuice is starting to work? I see Tim Corbett at 9.30am. He surmises that any neutrophils being produced are going to fight the infection in my thumb and consequently prescribes intra-veinous anti-biotics Tazocin and Teicoplanin to deal with it. He also replaces Omeprazole with Ramitodine, as the former can have immune system suppressing side effects. I am to be here for another 5 days at least to see how this treatment progresses. My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.5; Hbn: 8.4; PLT: 57; and CRP: 33. I am cannulated and have my first doses of Tazocin and Teicoplanin and then go for my Pentamidine nebulizer. This is followed by the taking of a bone marrow sample under a sedative. I hardly knew a thing, wake an hour or so later and doze for the rest of the after. I find out later that I was awake during the whole procedure, even discussing what is going on with Vicki Tindall and the nurses. The effect of the sedative is not to put the patient to sleep, but to wipe out the memory of what is being experienced. How does that happen? I don’t know but it certainly works! I send a text message out to my “health update network” of family and friends and get lots of replies including a great one from Tim Godwin, on holiday in Switzerland.
Monday 6th August 2007
Ros Johnston tells me that my white cell count is 1.3 and we are waiting for the detailed breakdown, which is subject of a manual count. If I have 0.4 neutrophils again I can go! But this is a hopelessly false dawn, because when I eventually get the breakdown - not until 6pm(!) - my neutrophils are back down to 0.1 - damn it! On top of that the white cell count is actually down as well, so where 1.3 came from - who knows. She says that my thumb needs looking at in a few days if I am discharged and may need lancing - ouch!! I have visits from Sarah and Paul and Mia Morris ahead of Tina’s coming at her usual time. My full blood results are - Wbc: 1.0; Neut: 0.1; Lymph: 0.8; Hbn: 10.3; PLT: 73; and CRP: 31. My weight today is still 70 kgs. It has been a fairly tense day waiting for, what I had hoped would be, a successful result, so - in the immortal words of the football team captain losing by a dodgy penalty - I was “gutted”. Where do we go from here? On the positive side, however, my mouth seems to be getting a bit better. I spend the evening reading.
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