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!
Sunday, 30 September 2007
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!
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