Monday 7th to Sunday 20th January 2008
We have a very relaxing and enjoyable week on La Gomera from Sunday to Sunday and it is warm. There is a fair bit of cloud which stops it getting too hot and I quickly discover that I cannot take very much direct sun anyway. In fact I feel the effects of an hour’s oblique morning sun on Monday, despite sun cream, and that warns me off for the rest of the week. I am on Ciprofloxacin - the anti-biotic for my lungs - and the advice sheet warns to avoid sun. So we find terraces with plenty of shade where we sit and read, etc. I still get the benefit of “reflected” sunlight and end up looking deceptively healthy! My appetite is well and truly back and I thoroughly enjoyed the white wine - Torres Penedes Vina Sol. My taste for red wine is still problematic. I have three injections of GCSF during the week to keep my immune system up. I have several physio and coughing sessions, which are tiring but necessary. I also find that I needed an afternoon sleep most days, but that ensures that I enjoy my evening meal and the customary nightcap! We get through plenty of water with me definitely drinking well in excess two litres per day. As the week progresses I notice that the entry point for my Hickman line is becoming a bit sore.
I am back for my clinic on Monday 14th and see Ros Johnston and the team. The good news is that the bone trephine sample taken in December is clear of CLL. It is agreed that my Hickman line is past its sell-by date and must come out. I am given an appointment for Thursday. I am also given a prescription for a week of Flucloxacillin and Augmentine to head off any possible infection with the line. There does not seem to have been any contact yet from Kings about the referral I should be having to the chest consultant, so Ros will pursue this herself. I mention that I had some occasional discomfort in the kidney area while I was on holiday. I am asked to supply a urine sample to check this out and also to give another sputum sample to see whether I have any further chest infection(s). I have put on 1.6 kgs over the past ten days - great! - and my weight today is 74 kgs. My blood results are - Wbc: 5.4; Neuts: 3.8; Lymph: 1.4; Hbn: 10.6; PLT: 110. My Monday is made even better by the surprise arrival for a couple of days of Anna, Nick and Eva. I am trusted to baby-mind Eva on Tuesday morning while Anna and Nick go to a business meeting in London. It is great fun!
I have my line taken out - it is actually cut out! - by Vicky Tindell on Thursday. The local anaesthetic means that it is a completely painless procedure. Tina drives me down and back to the RSCH as I was not sure how it would go. En route I get a call from Tim Godwin asking how things are going for me. I had not previously told him the news of the cancellation of my transplant, so I give him an update. It is great to hear from him and typical that he finds time to think of me. If I am up to it, I am always welcome back. What can I say? It is a wonderful boost to my morale. I weigh in at 74.2 kgs today. Is this progress - or is it holiday food?
On Friday I receive a copy of a letter sent from Jindriska Lindsay at Kings to Paul Hill. I am rather dispirited by its content as it talks of my December CT scan showing deterioration in terms of the bronchiectasis compared with the previous. She had not told me this at the consultation, albeit we had the bad news given to us with regards the transplant. However, the letter stated that they “would definitely consider transplant if his CT chest remains stable or improves”. We were not told this either, but hope it is correct. I am still finding walking up to the village makes me breathless, I have daily physio and coughing sessions and need an hour or two sleep in the afternoons. In the context of the letter from Kings, I certainly do not feel my lungs are getting any better - far from it!
I have a quiet Saturday catching up with correspondence, things on the laptop, etc. We have an invasion on Sunday with Matthew, Charrise and the girls coming for lunch and on into the evening. It is great seeing them, but by 5pm I am feeling very tired and have two hours sleep. Matthew sorts out Tina’s iPod shuffle - their Christmas present to her - setting up her profile on the laptop and loading her iPod with a selection of music. Great stuff.
Monday 21 January 2008
Friday 4 January 2008
Seeing in the New Year
Monday 31st December 2007 to Sunday 6th January 2008
I have been typing up my blog in the last few days, having stopped since early December and I am pleased that I will be practically up to date up to our flying off to La Gomera on Sunday. Checking back on my recent ramblings I have found a comment from another CLL sufferer, John Clark from London. It is very heartening to think that someone who doesn’t know me has found their way to my blog. I never seem to be able to find it when I go Googling! John, if you read this, I would appreciate your thoughts on whether any of it is in any way helpful to you, bearing in mind the nature of your condition may be different to mine. It would also be interesting to know how you found my blog. Many thanks in anticipation.
I go to Brighton for a blood test at the phlebotomy unit on Monday, while Tina, Linda and Paul do some sales shopping in town. We meet up for a lunch time drink at the very nice Terraces Bar and Grill on Marine Parade. Champagne for the ladies - what else! - and a macchiato for me. We have fillet steaks for our New Year’s Eve dinner, play canasta and celebrate midnight with a Frisbee throwing competition down the road using the Nigel Slater chocolate and cream sachertorte, which had turned out brick hard instead of soft and inviting! My blood results today are: - Wbc: 4.1; Neuts: 2.2; Hbn: 10.8; and PLT: 113.
We have a quiet New Year’s Day , Linda and Paul leaving after breakfast. By the way I am back to porridge for breakfast but now I no longer feel full right up to mid afternoon as I did before. The change in my stomach size seems to be permanent. It is an enormous morale booster. Wednesday is another quiet day. I am having long coughing sessions these past two days, probably because I resisted it whilst our guests were here. I have to say it is a very anti-social necessity - and very exhausting. Despite that I get down to sending a “health update” email to those family and friends - including former work colleagues - who have not heard of my recent change of fate. Although I have already recorded my thoughts in my blog, this is still quite cathartic. The replies I receive are full of encouragement as well as sympathy for the downturn in events.
I go down to the Day Unit on Thursday for a blood test, line care and a lengthy infusion of immunoglobulin - over three hours - which I must have every three or four weeks. The idea of the immunoglobulin (trade name Vigam) is to get rid of unhelpful and potentially disruptive micro cells in my bone marrow and help improve my Neutrophil count. Perhaps I will not now need GCSF so often? I am very lucky as I parked in a two hour parking bay, but stayed four hours - and didn’t get a ticket! I collect four packs of GCSF to keep me going for the next ten days. Diane also gives me a letter I must show at the airport check-in so that I am permitted to carry my GCSF syringes - complete with needles - on to the aircraft on Sunday. The possibility of their freezing in the hold would render the drug useless, so I must take it with me on the plane. My blood results today are - Wbc: 5.0; Neuts: 2.6; Lymph 1.7; Hbn: 11.0; and PLT: 110.
It is now Friday. Although I am tired during the day I have avoided the need for an hour or so sleep, mainly I think because I have managed to preoccupy myself with things. I went to Mass this morning and saw a lot of friends who asked for my latest update. There are so many lovely people about. Sheila Mitchell offers us accommodation in their house in Calpe any time we might want it while they are out there during the next three months. How nice! The fresh air catches up with me and when I get home I have a lengthy and tiring coughing session. This afternoon I collect Tina and we take Tosca (our 12 year old cat) to the vets again to see how her thyroid problem is going. She could well end up being a gold plated health problem!
We have a quiet Saturday, which includes packing for our week away. Matthew is with us at 7.30am on Sunday to take us to Gatwick for our flight to Tenerife and on to La Gomera. It is warm there and a complete contrast from England. We are looking forward to a good week.
I have been typing up my blog in the last few days, having stopped since early December and I am pleased that I will be practically up to date up to our flying off to La Gomera on Sunday. Checking back on my recent ramblings I have found a comment from another CLL sufferer, John Clark from London. It is very heartening to think that someone who doesn’t know me has found their way to my blog. I never seem to be able to find it when I go Googling! John, if you read this, I would appreciate your thoughts on whether any of it is in any way helpful to you, bearing in mind the nature of your condition may be different to mine. It would also be interesting to know how you found my blog. Many thanks in anticipation.
I go to Brighton for a blood test at the phlebotomy unit on Monday, while Tina, Linda and Paul do some sales shopping in town. We meet up for a lunch time drink at the very nice Terraces Bar and Grill on Marine Parade. Champagne for the ladies - what else! - and a macchiato for me. We have fillet steaks for our New Year’s Eve dinner, play canasta and celebrate midnight with a Frisbee throwing competition down the road using the Nigel Slater chocolate and cream sachertorte, which had turned out brick hard instead of soft and inviting! My blood results today are: - Wbc: 4.1; Neuts: 2.2; Hbn: 10.8; and PLT: 113.
We have a quiet New Year’s Day , Linda and Paul leaving after breakfast. By the way I am back to porridge for breakfast but now I no longer feel full right up to mid afternoon as I did before. The change in my stomach size seems to be permanent. It is an enormous morale booster. Wednesday is another quiet day. I am having long coughing sessions these past two days, probably because I resisted it whilst our guests were here. I have to say it is a very anti-social necessity - and very exhausting. Despite that I get down to sending a “health update” email to those family and friends - including former work colleagues - who have not heard of my recent change of fate. Although I have already recorded my thoughts in my blog, this is still quite cathartic. The replies I receive are full of encouragement as well as sympathy for the downturn in events.
I go down to the Day Unit on Thursday for a blood test, line care and a lengthy infusion of immunoglobulin - over three hours - which I must have every three or four weeks. The idea of the immunoglobulin (trade name Vigam) is to get rid of unhelpful and potentially disruptive micro cells in my bone marrow and help improve my Neutrophil count. Perhaps I will not now need GCSF so often? I am very lucky as I parked in a two hour parking bay, but stayed four hours - and didn’t get a ticket! I collect four packs of GCSF to keep me going for the next ten days. Diane also gives me a letter I must show at the airport check-in so that I am permitted to carry my GCSF syringes - complete with needles - on to the aircraft on Sunday. The possibility of their freezing in the hold would render the drug useless, so I must take it with me on the plane. My blood results today are - Wbc: 5.0; Neuts: 2.6; Lymph 1.7; Hbn: 11.0; and PLT: 110.
It is now Friday. Although I am tired during the day I have avoided the need for an hour or so sleep, mainly I think because I have managed to preoccupy myself with things. I went to Mass this morning and saw a lot of friends who asked for my latest update. There are so many lovely people about. Sheila Mitchell offers us accommodation in their house in Calpe any time we might want it while they are out there during the next three months. How nice! The fresh air catches up with me and when I get home I have a lengthy and tiring coughing session. This afternoon I collect Tina and we take Tosca (our 12 year old cat) to the vets again to see how her thyroid problem is going. She could well end up being a gold plated health problem!
We have a quiet Saturday, which includes packing for our week away. Matthew is with us at 7.30am on Sunday to take us to Gatwick for our flight to Tenerife and on to La Gomera. It is warm there and a complete contrast from England. We are looking forward to a good week.
A Low Key Christmas
Monday 24th to Sunday 30th December 2007
Monday is as downbeat as the weekend for me. I just about manage to finish the Christmas decorations but my heart isn’t really in it. My mood is worsened by the sad news of the death yesterday of the legendary Oscar Peterson. Such a consummate pianist; he played with the greats of jazz for over 50 years and was truly great himself. One of my all time favourites - as my record collection attests. We go to Christmas Eve Mass at 9pm and I am heartened by Father Tony’s homily, in which he mentions how hard a year it has been for so many people in our Parish community, through illness, bereavement, or whatever.
Because there was always uncertainty about whether I might be in hospital at Christmas, we had told Anna and Matthew to do their own things. So we have a quiet Christmas Day, just the two of us, but plenty of phone calls. Having said that we go to Sarah and Paul’s for a pre-lunch drink and lots of little sausages, etc. Incidentally my Christmas present from Sarah and Paul is a superb selection of beers! Readers may be starting to believe that I may have a little drink problem. Not so! I don’t drink spirits and my yearning for a beer extends to a pint per day - or maybe two at weekends and festive occasions. With my needing to put on a bit of weight, this is no bad thing, especially as my taste for wine is still in serous decline. We eventually sit down for our lunch of stuffed turkey breast at 5.30pm - and it was absolutely superb. Easy to cook, easy to cut and easy to eat! I suddenly discover that - wonder of wonders - my appetite has come back. I reckon it is the Omeprazole, with the possible assistance of regular spoonfuls of yogurt with my breakfast. Allelulia! It feels like the tide has turned!
We have Boxing Day lunch at Matthew and Charrise’s with three very excited granddaughters. Once again I get stuck into a super lunch of home made chicken and tarragon pie. Great cooking Matthew!
I have a full Thursday afternoon at the RSCH, firstly having a Pentamidine nebuliser, then blood samples and line care and lastly seeing Dr. Paul Hill. Thursday is his “duty day” at Brighton and I am very pleased to see him. He answers questions that had come to us following the consultation with Steve Devereux on the 21st. He tells me that I have had a very good response to the treatment, but at a cost. I have not had or needed any treatment since July, so in theory I have been in remission since then, albeit with lots of other problems! - ongoing chest infection type problems since late August for example. The length of the remission is unknown as there is insufficient history of the CamPred treatment trial to give any estimate. He acknowledges the promise in the new Revlimid treatment but his view is that they should now leave me alone and let me get my strength back. Revlimid would be probably be appropriate at whatever time my CLL returns. He does not think a transplant for me is now an option. Quote: “ we wouldn’t really want you as a statistic.” I know exactly what he means and am mentally already ahead of him.
This is not a good day as news comes through of the assassination of Benazir Bhutto, the hope of democracy and some degree of sanity in Pakistan. All hell breaks loose over there. Meanwhile all hell breaks loose in my lungs as the nebulizer has loosened up loads of stuff and I am now coughing for England! My weight today is up from last week to 72.2 kgs and my Neutrophils are 1.9, so I give myself a GCSF injection tonight as I have to keep above 2.0.
Linda and Paul come down from Leicester on Saturday to share the New Year with us. It’s great to have company but it is nonetheless a fairly quiet weekend, with lots of smoked salmon sandwiches - thank you Daphne! - and turkey pie.
Monday is as downbeat as the weekend for me. I just about manage to finish the Christmas decorations but my heart isn’t really in it. My mood is worsened by the sad news of the death yesterday of the legendary Oscar Peterson. Such a consummate pianist; he played with the greats of jazz for over 50 years and was truly great himself. One of my all time favourites - as my record collection attests. We go to Christmas Eve Mass at 9pm and I am heartened by Father Tony’s homily, in which he mentions how hard a year it has been for so many people in our Parish community, through illness, bereavement, or whatever.
Because there was always uncertainty about whether I might be in hospital at Christmas, we had told Anna and Matthew to do their own things. So we have a quiet Christmas Day, just the two of us, but plenty of phone calls. Having said that we go to Sarah and Paul’s for a pre-lunch drink and lots of little sausages, etc. Incidentally my Christmas present from Sarah and Paul is a superb selection of beers! Readers may be starting to believe that I may have a little drink problem. Not so! I don’t drink spirits and my yearning for a beer extends to a pint per day - or maybe two at weekends and festive occasions. With my needing to put on a bit of weight, this is no bad thing, especially as my taste for wine is still in serous decline. We eventually sit down for our lunch of stuffed turkey breast at 5.30pm - and it was absolutely superb. Easy to cook, easy to cut and easy to eat! I suddenly discover that - wonder of wonders - my appetite has come back. I reckon it is the Omeprazole, with the possible assistance of regular spoonfuls of yogurt with my breakfast. Allelulia! It feels like the tide has turned!
We have Boxing Day lunch at Matthew and Charrise’s with three very excited granddaughters. Once again I get stuck into a super lunch of home made chicken and tarragon pie. Great cooking Matthew!
I have a full Thursday afternoon at the RSCH, firstly having a Pentamidine nebuliser, then blood samples and line care and lastly seeing Dr. Paul Hill. Thursday is his “duty day” at Brighton and I am very pleased to see him. He answers questions that had come to us following the consultation with Steve Devereux on the 21st. He tells me that I have had a very good response to the treatment, but at a cost. I have not had or needed any treatment since July, so in theory I have been in remission since then, albeit with lots of other problems! - ongoing chest infection type problems since late August for example. The length of the remission is unknown as there is insufficient history of the CamPred treatment trial to give any estimate. He acknowledges the promise in the new Revlimid treatment but his view is that they should now leave me alone and let me get my strength back. Revlimid would be probably be appropriate at whatever time my CLL returns. He does not think a transplant for me is now an option. Quote: “ we wouldn’t really want you as a statistic.” I know exactly what he means and am mentally already ahead of him.
This is not a good day as news comes through of the assassination of Benazir Bhutto, the hope of democracy and some degree of sanity in Pakistan. All hell breaks loose over there. Meanwhile all hell breaks loose in my lungs as the nebulizer has loosened up loads of stuff and I am now coughing for England! My weight today is up from last week to 72.2 kgs and my Neutrophils are 1.9, so I give myself a GCSF injection tonight as I have to keep above 2.0.
Linda and Paul come down from Leicester on Saturday to share the New Year with us. It’s great to have company but it is nonetheless a fairly quiet weekend, with lots of smoked salmon sandwiches - thank you Daphne! - and turkey pie.
Thursday 3 January 2008
Hit with a Different Sledgehammer
Saturday 22nd to Sunday 23rd December 2007
I must confess to spending both days in deep gloom. After going through all that this year has thrown at me, to find that the route to potential cure is blocked off is a tough one. Despite talking things over together - as best we can - I cannot get over the shock of Friday’s news or put things into perspective. I call Daphne and Peter with my news, but do not really feel much like talking to anyone else yet. I look up Revlimid on the internet and read a very informative article by Dr. Chaya Venkat of Arizona published 30th January 2007 on the CLL Topics website. Revlimid is the brand name for Lenalidomide, a drug in the infamous Thalidomide family. It is very early days but from trials in the USA, it seems that it has some prospects for patients with p53 defects like me. I am not sure if I am heartened by the information or not. It makes comparisons with the “Sledgehammer” treatment of CamPred, which I have had, stating that neither of them is a “walk in the park” - don’t I know it! - but with unknown side effects as yet for Revlimid.
I am still needing about two hours sleep, usually in the afternoon. I am also trying to do my physio-therapy breathing exercises, however I don’t seem to be able to cough up quite so much stuff as before. Perhaps I need a nebuliser to free it up. I shall no doubt find out on Thursday when I have my Pentamidine. On the plus side I book a week in La Gomera from Sunday 6th January and we make a start on decorating the house for Christmas.
Friday 21st December 2007
The news today comes like a body blow to the solar plexus, especially after all we have been through this year. We learn from Dr. Steve Devereux that the condition of my lungs is such that the risk is too high to go for the transplant, certainly at the moment. We had seen his registrar, Dr Jindrinska Lindsay, beforehand and she had tried to prepare us for the news by mentioning the increased risk of fatality that was now present. But it doesn’t make much difference to how we eventually receive the news. The CT scans show no improvement between the one taken on 7th December - after my two weeks of chest treatment - and the previous one. My lungs have scarring and dilated alveoli, neither of which are repairable. The damage has been caused by my history of chest infections and with the intensive treatment I have had having made me more vulnerable to them. Steve Devereux puts the facts to us very carefully and sympathetically, but it doesn’t alter the sense of shock and disappointment we feel. He will refer me to a chest consultant for an opinion on whether there is any prospect, with further therapy etc., that my lungs could become stronger, but my senses tell me that the prospect of a transplant is now pretty remote. I say that I am happy to be referred to Dr. Jackson at Brighton, who saw me when I had my second bronchoscopy and who recommended my recent two week treatment plan.
Should the transplant not be the viable way forward, Dr. D mentions that a new drug is emerging on the scene, called Revlimid, which has shown some promising prospects of creating remission. A clinical trial is being put together by one of his national colleagues and he will explore the possibility of my being included in it. In the meantime I am to resume infusions of immunoglobulin on a three to four week basis. (My most recent infusion was on 24th November as an in-patient.)
We also discuss my loss of appetite and weight, which has been with me since my sickness session following the bronchoscopy in Brighton on 15th November. He suggests that I resume Omeprazole capsules as they might re-balance the workings of my stomach. Failing that being successful, they may have to have a look at my stomach with an endoscopy. I hope not! My blood results today are - Wbc: 2.99; Neuts: 1.9; Lymph: 0.7; Hbn: 10.3; and PLT: 140.
With all that bad news coming our way, we check with Dr. D if getting away to La Gomera for a week in January would be ok. “Seems like a very good idea.” was his reply. We could really do with a week of warm sun. Nonetheless we drive home very down beat. I call Anna and Matthew in the evening to pass on the bad news. This has not been a very nice Christmas present.
Monday 17th to Thursday 20th December 2008
I have an afternoon clinic appointment at the RSCH with Ros Johnston. She tells me that my second CT scan shows no change from the earlier one. At that time I do not see the significance in this. My blood results are good - Wbc: 6.2; Neuts: 4.5; Lymph: 1.1; Hbn: 10.8; and PLT: 139. My weight is down again to 71.2 kgs. I meet up with Anna and Eva for some very successful Christmas shopping on a very cold day. Thank you Anna!
I have a visit from Peter and Sue on Tuesday and we go to the Royal Oak for lunch of soup and a sandwich. It is good to see them. In true brotherly spirit Peter brings me a superb selection of beers, fully in the knowledge that I have my taste back in that department! I have been to my doctor’s surgery for repeat prescriptions as I only had two weeks’ supply on my discharge from hospital. My GP rings me to verify my need for my anti-fungal medication, Voraconozole. Apparently it is £1100 for two weeks’ supply and he has to get clearance from the Primary Care Trust. I don’t know how long I will have to have it, but I am sure getting my money’s worth!
Anna flies back to Glasgow at the crack of dawn on Thursday. I am not up to going to Gatwick that early, but have a visit from Derek O. later in the morning. We have tea and long chats. I am back to the Day Unit in the afternoon for line care and my blood test, which are good yet again - Wbc: 3.5; Neuts: 2.3; Lymph: 0.8; Hbn: 9.9; and PLT: 140. My weight today has gone up a bit to 71.4 kgs. My sleep and food patterns are no different.
I must confess to spending both days in deep gloom. After going through all that this year has thrown at me, to find that the route to potential cure is blocked off is a tough one. Despite talking things over together - as best we can - I cannot get over the shock of Friday’s news or put things into perspective. I call Daphne and Peter with my news, but do not really feel much like talking to anyone else yet. I look up Revlimid on the internet and read a very informative article by Dr. Chaya Venkat of Arizona published 30th January 2007 on the CLL Topics website. Revlimid is the brand name for Lenalidomide, a drug in the infamous Thalidomide family. It is very early days but from trials in the USA, it seems that it has some prospects for patients with p53 defects like me. I am not sure if I am heartened by the information or not. It makes comparisons with the “Sledgehammer” treatment of CamPred, which I have had, stating that neither of them is a “walk in the park” - don’t I know it! - but with unknown side effects as yet for Revlimid.
I am still needing about two hours sleep, usually in the afternoon. I am also trying to do my physio-therapy breathing exercises, however I don’t seem to be able to cough up quite so much stuff as before. Perhaps I need a nebuliser to free it up. I shall no doubt find out on Thursday when I have my Pentamidine. On the plus side I book a week in La Gomera from Sunday 6th January and we make a start on decorating the house for Christmas.
Friday 21st December 2007
The news today comes like a body blow to the solar plexus, especially after all we have been through this year. We learn from Dr. Steve Devereux that the condition of my lungs is such that the risk is too high to go for the transplant, certainly at the moment. We had seen his registrar, Dr Jindrinska Lindsay, beforehand and she had tried to prepare us for the news by mentioning the increased risk of fatality that was now present. But it doesn’t make much difference to how we eventually receive the news. The CT scans show no improvement between the one taken on 7th December - after my two weeks of chest treatment - and the previous one. My lungs have scarring and dilated alveoli, neither of which are repairable. The damage has been caused by my history of chest infections and with the intensive treatment I have had having made me more vulnerable to them. Steve Devereux puts the facts to us very carefully and sympathetically, but it doesn’t alter the sense of shock and disappointment we feel. He will refer me to a chest consultant for an opinion on whether there is any prospect, with further therapy etc., that my lungs could become stronger, but my senses tell me that the prospect of a transplant is now pretty remote. I say that I am happy to be referred to Dr. Jackson at Brighton, who saw me when I had my second bronchoscopy and who recommended my recent two week treatment plan.
Should the transplant not be the viable way forward, Dr. D mentions that a new drug is emerging on the scene, called Revlimid, which has shown some promising prospects of creating remission. A clinical trial is being put together by one of his national colleagues and he will explore the possibility of my being included in it. In the meantime I am to resume infusions of immunoglobulin on a three to four week basis. (My most recent infusion was on 24th November as an in-patient.)
We also discuss my loss of appetite and weight, which has been with me since my sickness session following the bronchoscopy in Brighton on 15th November. He suggests that I resume Omeprazole capsules as they might re-balance the workings of my stomach. Failing that being successful, they may have to have a look at my stomach with an endoscopy. I hope not! My blood results today are - Wbc: 2.99; Neuts: 1.9; Lymph: 0.7; Hbn: 10.3; and PLT: 140.
With all that bad news coming our way, we check with Dr. D if getting away to La Gomera for a week in January would be ok. “Seems like a very good idea.” was his reply. We could really do with a week of warm sun. Nonetheless we drive home very down beat. I call Anna and Matthew in the evening to pass on the bad news. This has not been a very nice Christmas present.
Monday 17th to Thursday 20th December 2008
I have an afternoon clinic appointment at the RSCH with Ros Johnston. She tells me that my second CT scan shows no change from the earlier one. At that time I do not see the significance in this. My blood results are good - Wbc: 6.2; Neuts: 4.5; Lymph: 1.1; Hbn: 10.8; and PLT: 139. My weight is down again to 71.2 kgs. I meet up with Anna and Eva for some very successful Christmas shopping on a very cold day. Thank you Anna!
I have a visit from Peter and Sue on Tuesday and we go to the Royal Oak for lunch of soup and a sandwich. It is good to see them. In true brotherly spirit Peter brings me a superb selection of beers, fully in the knowledge that I have my taste back in that department! I have been to my doctor’s surgery for repeat prescriptions as I only had two weeks’ supply on my discharge from hospital. My GP rings me to verify my need for my anti-fungal medication, Voraconozole. Apparently it is £1100 for two weeks’ supply and he has to get clearance from the Primary Care Trust. I don’t know how long I will have to have it, but I am sure getting my money’s worth!
Anna flies back to Glasgow at the crack of dawn on Thursday. I am not up to going to Gatwick that early, but have a visit from Derek O. later in the morning. We have tea and long chats. I am back to the Day Unit in the afternoon for line care and my blood test, which are good yet again - Wbc: 3.5; Neuts: 2.3; Lymph: 0.8; Hbn: 9.9; and PLT: 140. My weight today has gone up a bit to 71.4 kgs. My sleep and food patterns are no different.
A Quiet Week Recovering from Being In Dock
Monday 10th to Sunday 16th December 2007
I am back to the Day Unit for a blood test on Monday afternoon to find that my Neutrophils are up to 7.5. It looks as if I do not need to have my GCSF injections quite so often. The rest of my blood results are good - Wbc: 9.4; Lymph: 1.2; Hbn: 10.5; PLT: 117. My weight today is 72.2 kgs - much as expected. My Thursday results are - Wbc: 5.5; Neuts: 3.9; Hbn: 10.4; and
PLT: 125. My weight is down to 72 kgs.
The rest of the week is pretty low key for me. I am sleeping about two hours every day and well at night. I have no great appetite and am struggling to try to fill-in between meals with Fortisips etc. We go to Carol’s in Tunbridge Wells for our customary pre-Christmas Saturday. While Tina and Carol have a day in town, I spend the day at her house as I do not want to risk my lungs out in the open on a very cold day. Regretfully I am still not able to enjoy a glass of wine, but have mugs of tea and a beer instead - very not me! On Sunday we go to Gatwick to meet Anna and Eva off their flight down from Glasgow. They are down here until Thursday. It is great to see them.
I am back to the Day Unit for a blood test on Monday afternoon to find that my Neutrophils are up to 7.5. It looks as if I do not need to have my GCSF injections quite so often. The rest of my blood results are good - Wbc: 9.4; Lymph: 1.2; Hbn: 10.5; PLT: 117. My weight today is 72.2 kgs - much as expected. My Thursday results are - Wbc: 5.5; Neuts: 3.9; Hbn: 10.4; and
PLT: 125. My weight is down to 72 kgs.
The rest of the week is pretty low key for me. I am sleeping about two hours every day and well at night. I have no great appetite and am struggling to try to fill-in between meals with Fortisips etc. We go to Carol’s in Tunbridge Wells for our customary pre-Christmas Saturday. While Tina and Carol have a day in town, I spend the day at her house as I do not want to risk my lungs out in the open on a very cold day. Regretfully I am still not able to enjoy a glass of wine, but have mugs of tea and a beer instead - very not me! On Sunday we go to Gatwick to meet Anna and Eva off their flight down from Glasgow. They are down here until Thursday. It is great to see them.
A Second Week of Treatment for my Chest
Saturday 8th to Sunday 9th December 2007
An uneventful two days spent recovering from my two weeks “in dock”. Phone calls all round to keep Anna, Matthew, Daphne, Peter, family and friends up to date. My appetite is still minimal and I sleep at least two hours during the day. I am unsure how my weight is, but suspect it is down.
Friday 7th December 2007
I am nil by mouth overnight and have my bone marrow biopsy taken by Sangeeta under sedation. It makes all the difference! I come round about 11.20am for a brief discussion with Tim Corbett, the memory of which is lost in the mists of the sedation. I don’t think he said anything that I hadn’t heard before. I sleep on to 1pm and have a late lunch, followed by my CT scan. I then get myself packed and wait for Tina to collect me. I am not sure whether my two weeks of treatment have made any significant difference to the condition of my lungs. I suppose the CT scan will say it all. Have met a few more fellow patients who have helped make yet another stay in hospital bearable and amusing and I wait to hear what next.
Thursday 6th December 2007
My early morning routine is turned upside down when I don’t have my Tazocin infusion until 7.40am. Funny how institutionalised you can get in hospital. Even so I eventually get down to the shop getting papers for myself and others from my ward and the ward I was in for my birthday. Nothing like keeping the brain active! I have an enormous coughing-up session from 10am to 12midday, which leaves me exhausted. It is broken only by a visit from Dr. Sangeeta. She tells me I will be discharged tomorrow after a CT scan and a bone marrow biopsy, with Ciprofloxacin as my ongoing anti-biotic. Sr. Peter gives me Holy Communion after lunch and I then rest for a couple of hours before Tina visits. Thank goodness for my I-pod. Fortunately my lungs have decided to be quiet for the afternoon and evening. I celebrate the end of my Metronidazole-induced alcohol fast with an evening Guinness - purely for medicinal purposes of course. I do not start my late evening Tazocin and Gentamicine until 12.40am and so I don’t get to sleep until 2.20am! I finish reading Anna Politkovskaya’s “Russian Diary”. What a country and what a crooked regime!
Wednesday 5th December 2007
I am seen by Tim Corbett again today. He has had a chat with Steve Devereux about my situation and Steve’s view is to recommend going ahead with the transplant in January despite the shift in the odds. Tina visits me earlier than usual as it is her day off. I am not missing much on the weather front recently as it has been lousy outside. Sister Peter calls by briefly after lunch. I also have another visit from Rebecca, the physio. She advises that I am being a bit too enthusiastic with my breathing and coughing, hence the sore throat. I should be more gentle. The rest of the day I sleep, read and blog. My weight today is 73.4 kgs as weighed on the scales in the Haemotology Day Unit.
Tuesday 4th December 2007
I see Sangeeta this morning just as I am finishing my lung exercises. I am coughing up a lot more today, both before and after the exercises, giving me a bit of a sore throat. I ask her if my dilated alveoli will recover in time. Her answer suggested probably unlikely. I have a visit from Mia early afternoon and then am transported to Brighton General Hospital for my lung function test. I recognise John the ambulance driver from my police patrolling days in Mid Sussex back in the 70s and 80s! The lung test is disrupted somewhat by my still coughing up stuff. At one time I have to lie on the floor to make the coughing easier, simulating the lung exercises! I then have a visit from Jim, with Tina arriving shortly after he leaves. My coughing and the visits have tired me out and I sleep through the whole evening with my I-pod. My weight is 73.8 kgs.
Monday 3rd December 2007
Staff nurse Kate sees me this morning gleefully announcing that I have to do a 24 hour urine collection starting at 11am. This is one of the pre-transplant requests from Kings, which also included an echo-cardiogram and a lung function test. I discuss the chest situation with Tim Corbett when he sees me on his round. Unfortunately the Pseudomonas has colonised in my lungs, rather than being simply an infection and I will take it with me into the transplant. It will be a case of keeping it under some sort of control prior to and during the transplant - and afterwards no doubt. Tim’s assessment is that this moves the percentages for risk and success by something between 5 and 10%. I have the echo-cardiogram in the afternoon and then Tina visits me. I tell her about this latest assessment and we have a big hug-in. The renal unit seems to have a lot of confusing staff shift patterns so I see different people through the day. There are not so many nurses who are aufait with Hickman lines and the whole thing ran rather late such that I had my last Tazocin infusion at 1am. I had a bit of energy in the evening and started catching up on last week’s blog. My blood results today are - Wbc: 4.9; Neuts: 3.0; Hbn: 9.7; and PLT: 71. My weight is 73.6.kgs.
An uneventful two days spent recovering from my two weeks “in dock”. Phone calls all round to keep Anna, Matthew, Daphne, Peter, family and friends up to date. My appetite is still minimal and I sleep at least two hours during the day. I am unsure how my weight is, but suspect it is down.
Friday 7th December 2007
I am nil by mouth overnight and have my bone marrow biopsy taken by Sangeeta under sedation. It makes all the difference! I come round about 11.20am for a brief discussion with Tim Corbett, the memory of which is lost in the mists of the sedation. I don’t think he said anything that I hadn’t heard before. I sleep on to 1pm and have a late lunch, followed by my CT scan. I then get myself packed and wait for Tina to collect me. I am not sure whether my two weeks of treatment have made any significant difference to the condition of my lungs. I suppose the CT scan will say it all. Have met a few more fellow patients who have helped make yet another stay in hospital bearable and amusing and I wait to hear what next.
Thursday 6th December 2007
My early morning routine is turned upside down when I don’t have my Tazocin infusion until 7.40am. Funny how institutionalised you can get in hospital. Even so I eventually get down to the shop getting papers for myself and others from my ward and the ward I was in for my birthday. Nothing like keeping the brain active! I have an enormous coughing-up session from 10am to 12midday, which leaves me exhausted. It is broken only by a visit from Dr. Sangeeta. She tells me I will be discharged tomorrow after a CT scan and a bone marrow biopsy, with Ciprofloxacin as my ongoing anti-biotic. Sr. Peter gives me Holy Communion after lunch and I then rest for a couple of hours before Tina visits. Thank goodness for my I-pod. Fortunately my lungs have decided to be quiet for the afternoon and evening. I celebrate the end of my Metronidazole-induced alcohol fast with an evening Guinness - purely for medicinal purposes of course. I do not start my late evening Tazocin and Gentamicine until 12.40am and so I don’t get to sleep until 2.20am! I finish reading Anna Politkovskaya’s “Russian Diary”. What a country and what a crooked regime!
Wednesday 5th December 2007
I am seen by Tim Corbett again today. He has had a chat with Steve Devereux about my situation and Steve’s view is to recommend going ahead with the transplant in January despite the shift in the odds. Tina visits me earlier than usual as it is her day off. I am not missing much on the weather front recently as it has been lousy outside. Sister Peter calls by briefly after lunch. I also have another visit from Rebecca, the physio. She advises that I am being a bit too enthusiastic with my breathing and coughing, hence the sore throat. I should be more gentle. The rest of the day I sleep, read and blog. My weight today is 73.4 kgs as weighed on the scales in the Haemotology Day Unit.
Tuesday 4th December 2007
I see Sangeeta this morning just as I am finishing my lung exercises. I am coughing up a lot more today, both before and after the exercises, giving me a bit of a sore throat. I ask her if my dilated alveoli will recover in time. Her answer suggested probably unlikely. I have a visit from Mia early afternoon and then am transported to Brighton General Hospital for my lung function test. I recognise John the ambulance driver from my police patrolling days in Mid Sussex back in the 70s and 80s! The lung test is disrupted somewhat by my still coughing up stuff. At one time I have to lie on the floor to make the coughing easier, simulating the lung exercises! I then have a visit from Jim, with Tina arriving shortly after he leaves. My coughing and the visits have tired me out and I sleep through the whole evening with my I-pod. My weight is 73.8 kgs.
Monday 3rd December 2007
Staff nurse Kate sees me this morning gleefully announcing that I have to do a 24 hour urine collection starting at 11am. This is one of the pre-transplant requests from Kings, which also included an echo-cardiogram and a lung function test. I discuss the chest situation with Tim Corbett when he sees me on his round. Unfortunately the Pseudomonas has colonised in my lungs, rather than being simply an infection and I will take it with me into the transplant. It will be a case of keeping it under some sort of control prior to and during the transplant - and afterwards no doubt. Tim’s assessment is that this moves the percentages for risk and success by something between 5 and 10%. I have the echo-cardiogram in the afternoon and then Tina visits me. I tell her about this latest assessment and we have a big hug-in. The renal unit seems to have a lot of confusing staff shift patterns so I see different people through the day. There are not so many nurses who are aufait with Hickman lines and the whole thing ran rather late such that I had my last Tazocin infusion at 1am. I had a bit of energy in the evening and started catching up on last week’s blog. My blood results today are - Wbc: 4.9; Neuts: 3.0; Hbn: 9.7; and PLT: 71. My weight is 73.6.kgs.
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