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!
Monday 10 September 2007
Week Two in Kings and I Nearly Get Home
Monday 20th to Sunday 26th August 2007
Sunday 26th August 2007
I wake with a definite cough this morning and bringing up chesty phlegm. I have more catarrh as well. I am asked to give a sample of sputum. It is green - not so good. I mention this to the two Sarahs; I am checked over and given an all clear for today. My blood sample is taken at the second attempt, helped by the heat pad. It seems that the veins in my right arm are much easier to access than those in my left - and this has been the case for the past few days. Tina arrives at 1pm and stays for three hours. Just before she leaves I get my blood results, which tell me that my neutrophils have gone up again - to 0.54. My full results are - Wbc: 0.94; Neut: 0.54; Lymph: 0.38; Hbn: 9.8; PLT: 51. My weight this morning was 75 kgs again.
Saturday 25th August 2007
My weight is 75 kgs this morning. My blood samples are taken easily after using the heat pad and I have no discomfort with my anti-biotics even though the cannula is in an awkward and slightly painful place. I now have diarrhoea(!) - such that I have to give a sample for analysis. The little plug of congealed blood comes out from the “head” of my infected thumb. I keep it but is of no real interest to the doctors when they come - two Sarahs. But the good news is that my neutrophils have doubled since yesterday. My blood counts are - Wbc: 0.93; Neut: 0.49; Lymph: 0.42; Hbn: 10.8; PLT: 54; CRP: 10.7.
Fr. Luke gives me Holy Communion in the afternoon, which is otherwise spent watching Rugby League and Union through to 7pm. My anti-biotics boluses are quite uncomfortable despite the cannula being only 20 hours old. I am catching up well with my blog entries, bearing in mind how many days I let slip by feeling up to doing it. Despite realising some days ago that I should be doing leg strengthening exercises, I have not got down to doing any yet! So I have decided to put a reminder on my mobile phone for the afternoon and evening and I do six or eight knee bends - at least it is a start. I have also started a cough this afternoon; this on top of an increase in catarrh and nose blowing in recent days.
Friday 24th August 2007
I am awoken at 5.30am so they can have early blood samples. I suggest the heat pad will help - and it does. Staff Nurse Susie has no problem getting a large number of samples. The process is repeated later in the morning when some further samples are required and it works successfully again for Jinky. I am 76 kgs again today. I spend the morning on my blog, before lunch and then Matthew and Charrise both arrive at the same time. It is their anniversary and they are in town for the day and overnight, having dinner at Mon Plaisir and seeing “Joseph”. My blood transfusion is started at 12.30pm. Tina calls me to say that Steve Scott has offered to drive up with her to collect me. Isn’t that great! One of the pharmacists comes by to go through my discharge medications with me. She says with confidence that they will all be with me by 3.30pm. I say that I will believe that when I see it and of course they arrive at 5pm. Fortunately I am not held up because of that as Tina arrives at the same time and we do the final packing. In the meantime I have had a discharge chat with Dr Lara about my temperature not being below 37 for the last 36 hours. I also point out that as I am having the second unit of blood and whilst talking to her I am having a hot flush for half an hour or more. She checks me over and says that I am ok as long as my temperature does not go above 37.4c. Looking ahead I ask if there is a possibility of having the kidney function test, the fitting of the Hickman line and the clinic appointment with Steve Devereux all arranged for the same day.
I then have a very interesting visit from someone from the Hospital’s infection control team to check on the cleanliness of my room. I take the opportunity to mention something that has been bugging me for months, particularly in relation to MRSA. This is that, with the exception of here in the Derek Mitchell Unit, in all my recent experiences of three hospitals and at least six wards - maybe more counting Darenth Valley - I have never seen or heard a member of nursing staff challenge anyone as to whether they have cleaned their hands before visiting a patient - NEVER, EVER! There seems to be a total reliance on visitors - or whoever - knowing they should do it as they enter a ward or being reminded by their reading the advisory notices - which are of varying quality and visibility and can be passed by unseen. As a patient, I have never been told what infection control regime I should adhere to either. I am amazed that nursing staff do not seem to think it is within their responsibilities to “gatekeep” infection control on their wards. This, despite the huge media focus on MRSA and other hospital based infections. So the lady from Infection Control got more than she expected from her visit to me! She explained that her unit ran training for nursing staff on Infection Control and she would feedback my comments into the training they did.
At 6pm Tina is with me, I am packed and ready to go, when I notice that the little plug of dried blood at the core of my infected thumb had popped out and was hanging on by a small piece of tissue, exposing a small hole underneath. I am not happy about this, so I ask that a doctor see it. Fortunately it is Kat who comes and she doesn’t like the look of it, but more importantly notices that my thumb is more inflamed than yesterday. So we made a complete volte face. I am to stay in order to go back on intra-venous anti-biotics! Tina agrees that it is the right thing to do, despite otherwise wanting me to come home. I go downstairs to see and thank Steve for his kindness today and to apologise for the waste of his time this afternoon and evening and they leave for Hurst. I call Daphne and send some text messages to those I had triumphantly told I was coming home. I have to have a new cannula fitted. This does not get done until 11.30pm, at the third painful attempt, when I have one inserted on my right wrist in a rather awkward position. My anti-biotics go in alright and without any pain, but my hand and wrist are uncomfortable all night. I doze on my bed until 2am before tucking down. My blood counts today are - Wbc: 0.56; Neut: 0.23; Lymph: 0.32; Hbn: 8.6; PLT: 42. I do not get a CRP reading on the print out.
Thursday 23rd August 2007
I am up and showered before breakfast, but I have a very uncomfortable time having the anti-biotics through my cannula, which is just over 48 hours old. Time for yet another one. Despite the heat pad Staff Nurse Jinky has no joy getting my blood samples, so Snr. Staff Nurse Malin comes to the rescue fitting a new cannula on my left forearm and getting my blood samples from it. I am blogging at 11.15am. After lunch I am taken to the Nuclear Medicine Unit for a heart scan or “MUGA” to see how strong my heart is. I come out radio active! Tina, Anna and Eva arrive while I am there. We get back to my room, get news that my neutrophils hav gone up a shade to 0.26 and meet up with Steve Devereux, Lara, Kat and a delightful, Professor Duvivier, consultant dermatologist - he of the colourful and flamboyant bow tie! (check title). There ensues a fascinating examination and clinical discussion about my infected thumb, its history and levels of discomfort over the past few weeks. Professor Duvivier is enthusiastic about exploring inside but Steve Devereux is cautious as my low immune system could leave me open for more problems. So it is to be left to see how it progresses. The polite interplay between these two professionals is a joy to witness! Steve then discusses my situation with us and concludes that, with an apparent rising immune system, I can go home. I am to come off intra-venous anti-biotics and on to tablet form, I must watch out for any adverse change in the condition of my thumb and have twice weekly blood tests at Brighton. The transplant can go ahead in about four or five weeks time with the “C mismatch” donor initially identified a couple of months ago. The Hickman line fitting can be put back to nearer the transplant time, I have to have a kidney function check some time in the next 4 weeks and also to see him in his clinic to talk through the detail of the transplant. So it is great news!
My blood results today are - Wbc: 0.51; Neut: 0.26; Lymph: 0.24; Hbn: 8.6; PLT: 39; and CRP: 10.5. My weight is 76 kgs. With my Hbn count at 8.6, I am also to have 2 units of blood. I am later told that there is a new policy that blood can only be given between 9am and 5pm. Considering how, in my past experience, I always seem to be having blood through to the late the evening, I will believe that when I see it! I have a dozy evening.
Wednesday 22nd August 2007
My early morning Merapenam bolus and attendant flushes are uncomfortable again.
However, when it comes to taking my regular blood sample and the 500 ml of blood for Steve Devereux’s research, Staff Nurse Marianita uses the heat pad on my arm and I bleed from the crook of my arm readily and painlessly- at last! My weight is back to 77 kgs this morning, confirmed by an accurate machine later today. At 11am I have a lung function check. It takes more than an hour overall and seems to go pretty well. The analysed results have to be worked out before I find out what they are. Cold soup and lukewarm dinner follow. I hate this 12 midday institutional lunchtime! I hear that Steve Devereux was on the ward and looking for me while I was out! - but I am seen by Dr. Kat anyway. She tells me I have an appointment for the fitting of a Hickman line next Monday and using my time here to have several of the necessary checks, etc. done that are needed in preparation for the transplant, so saving days when the time comes for it. She also tells me the good news that my neutrophils today have gone up to 0.24! This is great news as it is the first time the neutrophils have come off the floor since 6th August -over two weeks ago. I celebrate in the evening with a Guinness while watching England lose 2-1 to Germany at football. I have a visit from Tessa after work which was nice and then I show Staff Nurse Marianita how blunt the needles on the GCSF packs are by a practical demonstration. She agrees with me and will feed this back to the pharmacists. My full blood results today are: Wbc: 0.51; Neut: 0.24; Lymph: 0.25; Hbn: 9.4; PLT: 36; and CRP: 11.3.
Tuesday 21st August 2007
More problems getting blood from me at 7.30am and after one try, it is aborted and not attempted again today. My weight today is up at 79 kgs and I notice I still have plenty of oedema in my legs. I am seen by Dr. Lara after lunch and get the latest thoughts on the possible next moves. We cover the difficulties getting blood samples from me, cannula lifespan, plasma exchange and a femoral line (now less likely), installing a PICC line (unlikely) and installing a Hickman line (most likely) ahead of its need for the bone marrow transplant. So, provided it can be done really soon, the Hickman line would be the answer to both problems of obtaining blood samples and 24 hour cannula lifespans. It transpires that it is not imperative to have blood samples every day and that every other day will suffice. Lara mentions a request from Dr. Devereux for a blood sample for his research work. With the likelihood of my having a residue of Campath in my blood, he wants to use it to help set up a method of measuring and tracking amounts of Campath in the blood over time. She reiterates that he hopes to see me as soon as he can. Tina arrives just in time to come with me while I have an x-ray - a routine procedure for all patients on my ward today.
I contact Dave Lloyd in Sussex Police Welfare giving him some idea about likely forthcoming travel costs for Tina when I am up here with the bone marrow transplant. He will check on Welfare policy and make an application on our behalf. Having contributed for 39 years, it seems reasonable to ask for something back. It will certainly help! I am told that I no longer have to fill in the “liquids - in - and - out” forms, as they don’t really apply to me; but it was good practice for the future. My late evening bolus of Meropenam was quite uncomfortable and had be done very slowly. I am still reading “Rough Crossings”. It is fascinating and very revealing of early 19th vision - and prejudices.
Monday 20th August 2007
My second week starts with feeling rather dozy after my late getting to bed last night - 3am after four hours of blood transfusion. Yesterday’s difficulties getting blood samples from me are repeated this morning with Veronica having three unsuccessful attempts around 7.30am. This was followed by Genette having one try at 11am before making way for Snr Staff Nurse Arlene who gets blood out of the back of my right thumb! - but painfully. This is hopeless. My veins have gone into retreat! If we had known that I would be hospitalised this long then I would have had a PICC line fitted weeks ago. Unfortunately, this was not foreseen as we were going from day to day in the vain (geddit!) hope that “something would turn up” on the neutrophil front. Now we seem to be stuck here trying - as it were - to get blood out of a stone! Oh well, the power of hindsight! Late morning and I get a visit from Dr. Steve Schey telling me that they have concluded the likely explanation for my stubborn neutrophil count is residual Campath in my blood / bone marrow and that they are thinking a way forward would be to give me a plasma transplant. This requires their taking blood from me, siphoning off the plasma content using a clever machine and replacing it with donor plasma. The idea is that hopefully this will get rid of the excess Campath and give me “clear” plasma in return. He opines that otherwise, I could be here for some time what with my infected thumb. He tells me that Steve Devereux wants to talk things through with me this afternoon. In the afternoon I have visits from Steve Bloomfield from the office and Michael, the volunteer helper. Unfortunately it is a “no show” from Steve Devereux. Perhaps tomorrow. My blood results today are - Wbc: 0.45; Neut: 0.18; Lymph: 0.26; Hbn: 9.6; PLT: 34; CRP: 8.4 - and my weight is 77.5 kgs.
At 11pm Snr Staff Nurse Olivia tries to give me my Meropenam but we find that just flushing the cannula is painful, so that’s yet another 24 hour maximum cannula gone. I am re-cannulated in the back of my left hand by the duty doctor and then have the Meropenam, finishing at 12.30am. - another late night!
Sunday 26th August 2007
I wake with a definite cough this morning and bringing up chesty phlegm. I have more catarrh as well. I am asked to give a sample of sputum. It is green - not so good. I mention this to the two Sarahs; I am checked over and given an all clear for today. My blood sample is taken at the second attempt, helped by the heat pad. It seems that the veins in my right arm are much easier to access than those in my left - and this has been the case for the past few days. Tina arrives at 1pm and stays for three hours. Just before she leaves I get my blood results, which tell me that my neutrophils have gone up again - to 0.54. My full results are - Wbc: 0.94; Neut: 0.54; Lymph: 0.38; Hbn: 9.8; PLT: 51. My weight this morning was 75 kgs again.
Saturday 25th August 2007
My weight is 75 kgs this morning. My blood samples are taken easily after using the heat pad and I have no discomfort with my anti-biotics even though the cannula is in an awkward and slightly painful place. I now have diarrhoea(!) - such that I have to give a sample for analysis. The little plug of congealed blood comes out from the “head” of my infected thumb. I keep it but is of no real interest to the doctors when they come - two Sarahs. But the good news is that my neutrophils have doubled since yesterday. My blood counts are - Wbc: 0.93; Neut: 0.49; Lymph: 0.42; Hbn: 10.8; PLT: 54; CRP: 10.7.
Fr. Luke gives me Holy Communion in the afternoon, which is otherwise spent watching Rugby League and Union through to 7pm. My anti-biotics boluses are quite uncomfortable despite the cannula being only 20 hours old. I am catching up well with my blog entries, bearing in mind how many days I let slip by feeling up to doing it. Despite realising some days ago that I should be doing leg strengthening exercises, I have not got down to doing any yet! So I have decided to put a reminder on my mobile phone for the afternoon and evening and I do six or eight knee bends - at least it is a start. I have also started a cough this afternoon; this on top of an increase in catarrh and nose blowing in recent days.
Friday 24th August 2007
I am awoken at 5.30am so they can have early blood samples. I suggest the heat pad will help - and it does. Staff Nurse Susie has no problem getting a large number of samples. The process is repeated later in the morning when some further samples are required and it works successfully again for Jinky. I am 76 kgs again today. I spend the morning on my blog, before lunch and then Matthew and Charrise both arrive at the same time. It is their anniversary and they are in town for the day and overnight, having dinner at Mon Plaisir and seeing “Joseph”. My blood transfusion is started at 12.30pm. Tina calls me to say that Steve Scott has offered to drive up with her to collect me. Isn’t that great! One of the pharmacists comes by to go through my discharge medications with me. She says with confidence that they will all be with me by 3.30pm. I say that I will believe that when I see it and of course they arrive at 5pm. Fortunately I am not held up because of that as Tina arrives at the same time and we do the final packing. In the meantime I have had a discharge chat with Dr Lara about my temperature not being below 37 for the last 36 hours. I also point out that as I am having the second unit of blood and whilst talking to her I am having a hot flush for half an hour or more. She checks me over and says that I am ok as long as my temperature does not go above 37.4c. Looking ahead I ask if there is a possibility of having the kidney function test, the fitting of the Hickman line and the clinic appointment with Steve Devereux all arranged for the same day.
I then have a very interesting visit from someone from the Hospital’s infection control team to check on the cleanliness of my room. I take the opportunity to mention something that has been bugging me for months, particularly in relation to MRSA. This is that, with the exception of here in the Derek Mitchell Unit, in all my recent experiences of three hospitals and at least six wards - maybe more counting Darenth Valley - I have never seen or heard a member of nursing staff challenge anyone as to whether they have cleaned their hands before visiting a patient - NEVER, EVER! There seems to be a total reliance on visitors - or whoever - knowing they should do it as they enter a ward or being reminded by their reading the advisory notices - which are of varying quality and visibility and can be passed by unseen. As a patient, I have never been told what infection control regime I should adhere to either. I am amazed that nursing staff do not seem to think it is within their responsibilities to “gatekeep” infection control on their wards. This, despite the huge media focus on MRSA and other hospital based infections. So the lady from Infection Control got more than she expected from her visit to me! She explained that her unit ran training for nursing staff on Infection Control and she would feedback my comments into the training they did.
At 6pm Tina is with me, I am packed and ready to go, when I notice that the little plug of dried blood at the core of my infected thumb had popped out and was hanging on by a small piece of tissue, exposing a small hole underneath. I am not happy about this, so I ask that a doctor see it. Fortunately it is Kat who comes and she doesn’t like the look of it, but more importantly notices that my thumb is more inflamed than yesterday. So we made a complete volte face. I am to stay in order to go back on intra-venous anti-biotics! Tina agrees that it is the right thing to do, despite otherwise wanting me to come home. I go downstairs to see and thank Steve for his kindness today and to apologise for the waste of his time this afternoon and evening and they leave for Hurst. I call Daphne and send some text messages to those I had triumphantly told I was coming home. I have to have a new cannula fitted. This does not get done until 11.30pm, at the third painful attempt, when I have one inserted on my right wrist in a rather awkward position. My anti-biotics go in alright and without any pain, but my hand and wrist are uncomfortable all night. I doze on my bed until 2am before tucking down. My blood counts today are - Wbc: 0.56; Neut: 0.23; Lymph: 0.32; Hbn: 8.6; PLT: 42. I do not get a CRP reading on the print out.
Thursday 23rd August 2007
I am up and showered before breakfast, but I have a very uncomfortable time having the anti-biotics through my cannula, which is just over 48 hours old. Time for yet another one. Despite the heat pad Staff Nurse Jinky has no joy getting my blood samples, so Snr. Staff Nurse Malin comes to the rescue fitting a new cannula on my left forearm and getting my blood samples from it. I am blogging at 11.15am. After lunch I am taken to the Nuclear Medicine Unit for a heart scan or “MUGA” to see how strong my heart is. I come out radio active! Tina, Anna and Eva arrive while I am there. We get back to my room, get news that my neutrophils hav gone up a shade to 0.26 and meet up with Steve Devereux, Lara, Kat and a delightful, Professor Duvivier, consultant dermatologist - he of the colourful and flamboyant bow tie! (check title). There ensues a fascinating examination and clinical discussion about my infected thumb, its history and levels of discomfort over the past few weeks. Professor Duvivier is enthusiastic about exploring inside but Steve Devereux is cautious as my low immune system could leave me open for more problems. So it is to be left to see how it progresses. The polite interplay between these two professionals is a joy to witness! Steve then discusses my situation with us and concludes that, with an apparent rising immune system, I can go home. I am to come off intra-venous anti-biotics and on to tablet form, I must watch out for any adverse change in the condition of my thumb and have twice weekly blood tests at Brighton. The transplant can go ahead in about four or five weeks time with the “C mismatch” donor initially identified a couple of months ago. The Hickman line fitting can be put back to nearer the transplant time, I have to have a kidney function check some time in the next 4 weeks and also to see him in his clinic to talk through the detail of the transplant. So it is great news!
My blood results today are - Wbc: 0.51; Neut: 0.26; Lymph: 0.24; Hbn: 8.6; PLT: 39; and CRP: 10.5. My weight is 76 kgs. With my Hbn count at 8.6, I am also to have 2 units of blood. I am later told that there is a new policy that blood can only be given between 9am and 5pm. Considering how, in my past experience, I always seem to be having blood through to the late the evening, I will believe that when I see it! I have a dozy evening.
Wednesday 22nd August 2007
My early morning Merapenam bolus and attendant flushes are uncomfortable again.
However, when it comes to taking my regular blood sample and the 500 ml of blood for Steve Devereux’s research, Staff Nurse Marianita uses the heat pad on my arm and I bleed from the crook of my arm readily and painlessly- at last! My weight is back to 77 kgs this morning, confirmed by an accurate machine later today. At 11am I have a lung function check. It takes more than an hour overall and seems to go pretty well. The analysed results have to be worked out before I find out what they are. Cold soup and lukewarm dinner follow. I hate this 12 midday institutional lunchtime! I hear that Steve Devereux was on the ward and looking for me while I was out! - but I am seen by Dr. Kat anyway. She tells me I have an appointment for the fitting of a Hickman line next Monday and using my time here to have several of the necessary checks, etc. done that are needed in preparation for the transplant, so saving days when the time comes for it. She also tells me the good news that my neutrophils today have gone up to 0.24! This is great news as it is the first time the neutrophils have come off the floor since 6th August -over two weeks ago. I celebrate in the evening with a Guinness while watching England lose 2-1 to Germany at football. I have a visit from Tessa after work which was nice and then I show Staff Nurse Marianita how blunt the needles on the GCSF packs are by a practical demonstration. She agrees with me and will feed this back to the pharmacists. My full blood results today are: Wbc: 0.51; Neut: 0.24; Lymph: 0.25; Hbn: 9.4; PLT: 36; and CRP: 11.3.
Tuesday 21st August 2007
More problems getting blood from me at 7.30am and after one try, it is aborted and not attempted again today. My weight today is up at 79 kgs and I notice I still have plenty of oedema in my legs. I am seen by Dr. Lara after lunch and get the latest thoughts on the possible next moves. We cover the difficulties getting blood samples from me, cannula lifespan, plasma exchange and a femoral line (now less likely), installing a PICC line (unlikely) and installing a Hickman line (most likely) ahead of its need for the bone marrow transplant. So, provided it can be done really soon, the Hickman line would be the answer to both problems of obtaining blood samples and 24 hour cannula lifespans. It transpires that it is not imperative to have blood samples every day and that every other day will suffice. Lara mentions a request from Dr. Devereux for a blood sample for his research work. With the likelihood of my having a residue of Campath in my blood, he wants to use it to help set up a method of measuring and tracking amounts of Campath in the blood over time. She reiterates that he hopes to see me as soon as he can. Tina arrives just in time to come with me while I have an x-ray - a routine procedure for all patients on my ward today.
I contact Dave Lloyd in Sussex Police Welfare giving him some idea about likely forthcoming travel costs for Tina when I am up here with the bone marrow transplant. He will check on Welfare policy and make an application on our behalf. Having contributed for 39 years, it seems reasonable to ask for something back. It will certainly help! I am told that I no longer have to fill in the “liquids - in - and - out” forms, as they don’t really apply to me; but it was good practice for the future. My late evening bolus of Meropenam was quite uncomfortable and had be done very slowly. I am still reading “Rough Crossings”. It is fascinating and very revealing of early 19th vision - and prejudices.
Monday 20th August 2007
My second week starts with feeling rather dozy after my late getting to bed last night - 3am after four hours of blood transfusion. Yesterday’s difficulties getting blood samples from me are repeated this morning with Veronica having three unsuccessful attempts around 7.30am. This was followed by Genette having one try at 11am before making way for Snr Staff Nurse Arlene who gets blood out of the back of my right thumb! - but painfully. This is hopeless. My veins have gone into retreat! If we had known that I would be hospitalised this long then I would have had a PICC line fitted weeks ago. Unfortunately, this was not foreseen as we were going from day to day in the vain (geddit!) hope that “something would turn up” on the neutrophil front. Now we seem to be stuck here trying - as it were - to get blood out of a stone! Oh well, the power of hindsight! Late morning and I get a visit from Dr. Steve Schey telling me that they have concluded the likely explanation for my stubborn neutrophil count is residual Campath in my blood / bone marrow and that they are thinking a way forward would be to give me a plasma transplant. This requires their taking blood from me, siphoning off the plasma content using a clever machine and replacing it with donor plasma. The idea is that hopefully this will get rid of the excess Campath and give me “clear” plasma in return. He opines that otherwise, I could be here for some time what with my infected thumb. He tells me that Steve Devereux wants to talk things through with me this afternoon. In the afternoon I have visits from Steve Bloomfield from the office and Michael, the volunteer helper. Unfortunately it is a “no show” from Steve Devereux. Perhaps tomorrow. My blood results today are - Wbc: 0.45; Neut: 0.18; Lymph: 0.26; Hbn: 9.6; PLT: 34; CRP: 8.4 - and my weight is 77.5 kgs.
At 11pm Snr Staff Nurse Olivia tries to give me my Meropenam but we find that just flushing the cannula is painful, so that’s yet another 24 hour maximum cannula gone. I am re-cannulated in the back of my left hand by the duty doctor and then have the Meropenam, finishing at 12.30am. - another late night!
Transferred to Kings
Monday 13th to Sunday 19th August 2007
Sunday 19th August 2007
I am 77 kgs yet again today but notice that the fluid in my legs is much reduced. I realise that my only exercise is going down to the shop in the morning to get my newspaper. I resolve that I must do some leg strengthening exercises as my thighs and calves still feel weak. Tina is here at 1pm for a few hours and while here sees the attempts to take a blood sample for type matching as I need to be transfused. Eventually a sample is taken at the sixth attempt - painfully from the inside of the wrist. I am beginning to feel like a pin cushion! My blood results today are - Wbc: 0.4; Neut: 0.13;Lymph: 0.26; Hbn: 7.8; PLT: 37 - hence the need for the transfusion. Father Luke comes to give me Holy Communion and at 7.15pm Jane and Richard turn up for a visit. Somehow they contrived to get here via the south circular, which took them ages. They have never been any good at navigation! - but it was nice to see them. At 9.30pm I am started on the first of the two units of blood I am to have, but my cannula - once again - is not destined to last more than 24 hours. I have to be re-cannulated on the inside of my right arm and it seems to work at first but my vein aches throughout the second unit. I am getting very thin veins! My transfusion finishes at 2.30am and I get to bed at 3am.
Saturday 18th August 2007
I am 77 kgs again today, but I think I still have fluid in my legs to get rid of. I am seen by (Dr) Emma who is pleased with how things are going, despite my neutrophil count being pretty abysmal. My full results are - Wbc: 0.4; Neut: 0.12; Lymph: 0.26;Hbn: 8.5; PLT: 37. The consultants have discussed whether they could give me anything else to aid my neutrophil recovery or reduce the impact of the Campath. I should hear more of that soon. I get a real surprise at lunchtime when, completely out of the blue, Daphne walks in to visit me. It is fantastic! She had to be up about 4.30am this morning to get to Bangor to catch the train. I have to confess to being close to a tear! She is able to stay for three hours before leaving to get her train from Euston. Apparently Tina knew she was coming but kept it a secret. Daphne even text messaged me from the entrance lobby downstairs in reply to my last text to her to make the surprise even greater! That gave me a great lift for the rest of the day. I learn from Michael, the ward volunteer, that the Davidson ward refit will include the provision of wifi. Now that will be good! Yet another cannula doesn’t last and I have another inserted, this time on the back of my left hand - ouch!!
Friday 17th August 2007
My weight is down 2 kgs to 77 kgs this morning and my breakfast medicine cocktail has been reduced from 8 to 2 items. I have excellent news from Lara that the macrophages are no longer in hyper-active mode. The bone marrow is creating red cells, platelets (a bit), but no neutrophils yet and there is no CLL in there. They have still to examine the bone biopsy - or trephine - to confirm no CLL is lurking on the inside of the bone. Steve Devereux thinks that the neutrophils are being suppressed by a residue of Campath in my body. I am told that Campath can remain in the body for ten weeks after the cessation of its use - potentially another six weeks. They want to keep me here to continue giving me anti-biotics for my infected thumb and the thinking is to have the transplant as soon as possible - maybe in two to three weeks. I conclude from this that the timeframe for the transplant is really being dictated by my infected thumb, in that until it is cleared up it is attracting what neutrophils I do have to deal with the infection there. That, combined with the Campath effect stubbornly holding down neutrophil recovery as well, I am wondering what will come first - neutrophil recovery or thumb infection clear-up and how long will this take? Tina is here at 1.30pm for a couple of hours and I then send out “good news” text messages. My blood results today are still not good - Wbc: 0.3; Neut: 0.1; Lymph: 0.19; Hbn: 8.7; PLT: 35; CRP: 14. I am self injecting the GCSF in my thighs in preference to the rather painful injections by the nurses in my upper arms. I am finding the food to be not so good as I remember it from February and the choices more limited compared with the RSCH. It doesn’t take long to run through the options and with the choice of puddings, for example, just two - with no ice cream (!) - it is soon going to get boring.
Thursday 16th August 2007
I am awake at 6.20am for the taking of a blood sample and my anti-biotics. My weight is 79 kgs - no doubt all about excess fluid. I am now entrusted with my own Itroconozole, which I can keeping the fridge to make it as palatable as possible. With the food Tina brought me yesterday, I have a better breakfast this morning - cornflakes, yogurt, honey and cut peach. Since being here I have felt a bit like a prisoner in a cell and I do not feel I have the same freedom of movement I enjoyed down at Brighton. This comes mainly from having to have my door shut all the time. However, I am beginning to feel my feet now and I am able to escape from the ward at 10am to walk down to the shop and buy a newspaper. I have to wear a mask, which I must wear at any time that I leave my room; ward rules - understandable for transplant patients. I still have a lot of fluid on my legs, very noticeable when climbing back up the stairs from the ground floor. Later in the morning I get a visit from Jo. She is in the process of vacating their house in Fulham with the removal / container people in today. She will be taking Jules and Jane with her to Peter and Suzanne’s tomorrow and they fly out to HK next Wednesday. It is lovely to see her before she goes. I have a CT Scan in the afternoon and am then seen by consultant Dr. Steve Schey - pronounced “Sky” - plus Drs Lara and Kat. The current view is that we should watch and wait until anything is identified that needs a response, rather than attempt any further treatment - which might be counter-productive at this stage. I have a visit from Tessa at 5pm and then Father Luke - the “resident” Catholic chaplain - at 7.30pm, as I had requested contact with a priest.
Wednesday 15th August 2007
I have to get the hang of a different regime here, so I wait for things to happen and then I can fit my routine - such as it ever is(!) - into the one in the ward. Breakfast is pretty basic and I just have toast and a very weak tea. We will improve on that tomorrow! I see Dr Lara this morning. Good to see a familiar face from February. My Furosimide dosage is doubled to help sort out the fluid in my legs. I am still amazed how that has happened. I am also introduced to a ward requirement of measuring and recording hourly liquid intake and outtake - with a plastic measuring jug supplied for the latter purpose! Apparently this will be even more important when I am here for my transplant. I get some text messages out letting friends and family know I am up here now. Tina and Matthew arrive at 12.30pm for a visit and have to wear a plastic apron and go through several hand washing rituals. Now that is a very reassuring practice, but not surprising considering the state of health of patients on this ward, struggling with post transplant disease, etc. It seems that, no sooner has Tina and Matthew sat down, the door bursts open and in stomps Tim Godwin, complete with plastic apron - just about fitting him! What a great surprise and how nice. He must have got my text message, checked his diary, sorted out his desk and come straight over from the Yard. We have great chats for about half an hour and then off he dashes. Tina and Matthew stay until about 3.15pm, by which time I have seen Lara again and discuss the need for another bone marrow sample this afternoon. Because I have had lunch I cannot have a proper sedative, but I am given it in tablet form instead. Lara also says that it is difficult to tell yet whether the Vigam has been effective; they also want the sample in order to check for any other infections I may have which could be causing the macrophages to be so overactive. The RSCH slides of last week’s bone marrow sample have not arrived yet. I have my sample taken about 4pm but the sedative does not seem to have any effect, albeit it is not as painful an experience as it has sometimes been. My blood results are - Wbc: 0.61; Neut: 0.14; Lymph: 0.45; Hbn: 9.9; PLT: 32. My weight this morning is 79 kgs.
Tuesday 14th August 2007
I am 78 kgs today - two kgs up from yesterday! I have my early morning anti-biotics and find the cannula is painful just 36 hours after being inserted. I am recannulated later in the morning. I get a morning visit from Jim and he witnesses the fiddly business of having six small bottles of Vigam on the intra-venous drip. My blood results today are -Wbc: 0.4; Neut: 0.0; Lymph: 0.3; Hbn: 9.5; PLT: 25; and CRP: 17. At 2.40pm I am told that there is a bed free at Kings and that I have 30 minutes to pack as a car will be ready to take me there. This is soon changed to an hour as it is decided I should travel in a paramedic ambulance. Not quite sure why, but the crew turn up with a stretcher for me to lie on! We leave the RSCH at 4pm and have a horrendous journey, with the M25 and M23 at standstills due to a turned over lorry. Our maximum two hour journey takes three and a half hours! I arrive at the David Mitchell Unit with enormous fat legs, full of fluid. Did the journey really do that? I certainly don’t recall my legs being up earlier today, although I had put on weight since yesterday. This ward is the specialist ward where I will have my transplant. There is a strict regime for patients and visitors and the first thing I notice is that I don’t feel I can wander about with the freedom I have had in the Haematology ward at the RSCH. I have my own room - no. 12 - but unsurprisingly it is not so spacious as my recent experience. The bathroom certainly is no match, except the floor cannot flood! On the plus side, I have a small fridge, good enough for small drinks, the water jug, pots of yogurt and a few bottles of Guinness. The view is non-existent. I look straight out at the side walls of Davidson ward, about 12 feet away together with its scaffolding, as it is being gutted and completely refurbished. I have blood samples taken at 10.15pm and am checked over by the night duty doctor, Rachel, whom I seem to remember from my time on Davidson ward in February. I think it was Rachel who was very good with the cannula. I have my antibiotics and settle down for the night at midnight.
Monday 13th August 2007
There are no changes in my overall situation although my thumb appears to be slightly better - or is that wishful thinking? My weight is 76 kgs again and my blood results are -Wbc: 0.5; Neut:.0.1; Lymph: 0.4; Hbn: 9.9; PLT: 24; and CRP: 23. We are still waiting for news from Kings on bed availability, but nothing transpires. It is my fifth day on Vigam out of the six days of treatment required and I am wondering what a move to Kings will bring if the treatment for the macrophages has finished. Still I guess it would be good for them to see the problem at first hand. Tina is joined by Anna, Nick and Eva as my only visitors today.
Sunday 19th August 2007
I am 77 kgs yet again today but notice that the fluid in my legs is much reduced. I realise that my only exercise is going down to the shop in the morning to get my newspaper. I resolve that I must do some leg strengthening exercises as my thighs and calves still feel weak. Tina is here at 1pm for a few hours and while here sees the attempts to take a blood sample for type matching as I need to be transfused. Eventually a sample is taken at the sixth attempt - painfully from the inside of the wrist. I am beginning to feel like a pin cushion! My blood results today are - Wbc: 0.4; Neut: 0.13;Lymph: 0.26; Hbn: 7.8; PLT: 37 - hence the need for the transfusion. Father Luke comes to give me Holy Communion and at 7.15pm Jane and Richard turn up for a visit. Somehow they contrived to get here via the south circular, which took them ages. They have never been any good at navigation! - but it was nice to see them. At 9.30pm I am started on the first of the two units of blood I am to have, but my cannula - once again - is not destined to last more than 24 hours. I have to be re-cannulated on the inside of my right arm and it seems to work at first but my vein aches throughout the second unit. I am getting very thin veins! My transfusion finishes at 2.30am and I get to bed at 3am.
Saturday 18th August 2007
I am 77 kgs again today, but I think I still have fluid in my legs to get rid of. I am seen by (Dr) Emma who is pleased with how things are going, despite my neutrophil count being pretty abysmal. My full results are - Wbc: 0.4; Neut: 0.12; Lymph: 0.26;Hbn: 8.5; PLT: 37. The consultants have discussed whether they could give me anything else to aid my neutrophil recovery or reduce the impact of the Campath. I should hear more of that soon. I get a real surprise at lunchtime when, completely out of the blue, Daphne walks in to visit me. It is fantastic! She had to be up about 4.30am this morning to get to Bangor to catch the train. I have to confess to being close to a tear! She is able to stay for three hours before leaving to get her train from Euston. Apparently Tina knew she was coming but kept it a secret. Daphne even text messaged me from the entrance lobby downstairs in reply to my last text to her to make the surprise even greater! That gave me a great lift for the rest of the day. I learn from Michael, the ward volunteer, that the Davidson ward refit will include the provision of wifi. Now that will be good! Yet another cannula doesn’t last and I have another inserted, this time on the back of my left hand - ouch!!
Friday 17th August 2007
My weight is down 2 kgs to 77 kgs this morning and my breakfast medicine cocktail has been reduced from 8 to 2 items. I have excellent news from Lara that the macrophages are no longer in hyper-active mode. The bone marrow is creating red cells, platelets (a bit), but no neutrophils yet and there is no CLL in there. They have still to examine the bone biopsy - or trephine - to confirm no CLL is lurking on the inside of the bone. Steve Devereux thinks that the neutrophils are being suppressed by a residue of Campath in my body. I am told that Campath can remain in the body for ten weeks after the cessation of its use - potentially another six weeks. They want to keep me here to continue giving me anti-biotics for my infected thumb and the thinking is to have the transplant as soon as possible - maybe in two to three weeks. I conclude from this that the timeframe for the transplant is really being dictated by my infected thumb, in that until it is cleared up it is attracting what neutrophils I do have to deal with the infection there. That, combined with the Campath effect stubbornly holding down neutrophil recovery as well, I am wondering what will come first - neutrophil recovery or thumb infection clear-up and how long will this take? Tina is here at 1.30pm for a couple of hours and I then send out “good news” text messages. My blood results today are still not good - Wbc: 0.3; Neut: 0.1; Lymph: 0.19; Hbn: 8.7; PLT: 35; CRP: 14. I am self injecting the GCSF in my thighs in preference to the rather painful injections by the nurses in my upper arms. I am finding the food to be not so good as I remember it from February and the choices more limited compared with the RSCH. It doesn’t take long to run through the options and with the choice of puddings, for example, just two - with no ice cream (!) - it is soon going to get boring.
Thursday 16th August 2007
I am awake at 6.20am for the taking of a blood sample and my anti-biotics. My weight is 79 kgs - no doubt all about excess fluid. I am now entrusted with my own Itroconozole, which I can keeping the fridge to make it as palatable as possible. With the food Tina brought me yesterday, I have a better breakfast this morning - cornflakes, yogurt, honey and cut peach. Since being here I have felt a bit like a prisoner in a cell and I do not feel I have the same freedom of movement I enjoyed down at Brighton. This comes mainly from having to have my door shut all the time. However, I am beginning to feel my feet now and I am able to escape from the ward at 10am to walk down to the shop and buy a newspaper. I have to wear a mask, which I must wear at any time that I leave my room; ward rules - understandable for transplant patients. I still have a lot of fluid on my legs, very noticeable when climbing back up the stairs from the ground floor. Later in the morning I get a visit from Jo. She is in the process of vacating their house in Fulham with the removal / container people in today. She will be taking Jules and Jane with her to Peter and Suzanne’s tomorrow and they fly out to HK next Wednesday. It is lovely to see her before she goes. I have a CT Scan in the afternoon and am then seen by consultant Dr. Steve Schey - pronounced “Sky” - plus Drs Lara and Kat. The current view is that we should watch and wait until anything is identified that needs a response, rather than attempt any further treatment - which might be counter-productive at this stage. I have a visit from Tessa at 5pm and then Father Luke - the “resident” Catholic chaplain - at 7.30pm, as I had requested contact with a priest.
Wednesday 15th August 2007
I have to get the hang of a different regime here, so I wait for things to happen and then I can fit my routine - such as it ever is(!) - into the one in the ward. Breakfast is pretty basic and I just have toast and a very weak tea. We will improve on that tomorrow! I see Dr Lara this morning. Good to see a familiar face from February. My Furosimide dosage is doubled to help sort out the fluid in my legs. I am still amazed how that has happened. I am also introduced to a ward requirement of measuring and recording hourly liquid intake and outtake - with a plastic measuring jug supplied for the latter purpose! Apparently this will be even more important when I am here for my transplant. I get some text messages out letting friends and family know I am up here now. Tina and Matthew arrive at 12.30pm for a visit and have to wear a plastic apron and go through several hand washing rituals. Now that is a very reassuring practice, but not surprising considering the state of health of patients on this ward, struggling with post transplant disease, etc. It seems that, no sooner has Tina and Matthew sat down, the door bursts open and in stomps Tim Godwin, complete with plastic apron - just about fitting him! What a great surprise and how nice. He must have got my text message, checked his diary, sorted out his desk and come straight over from the Yard. We have great chats for about half an hour and then off he dashes. Tina and Matthew stay until about 3.15pm, by which time I have seen Lara again and discuss the need for another bone marrow sample this afternoon. Because I have had lunch I cannot have a proper sedative, but I am given it in tablet form instead. Lara also says that it is difficult to tell yet whether the Vigam has been effective; they also want the sample in order to check for any other infections I may have which could be causing the macrophages to be so overactive. The RSCH slides of last week’s bone marrow sample have not arrived yet. I have my sample taken about 4pm but the sedative does not seem to have any effect, albeit it is not as painful an experience as it has sometimes been. My blood results are - Wbc: 0.61; Neut: 0.14; Lymph: 0.45; Hbn: 9.9; PLT: 32. My weight this morning is 79 kgs.
Tuesday 14th August 2007
I am 78 kgs today - two kgs up from yesterday! I have my early morning anti-biotics and find the cannula is painful just 36 hours after being inserted. I am recannulated later in the morning. I get a morning visit from Jim and he witnesses the fiddly business of having six small bottles of Vigam on the intra-venous drip. My blood results today are -Wbc: 0.4; Neut: 0.0; Lymph: 0.3; Hbn: 9.5; PLT: 25; and CRP: 17. At 2.40pm I am told that there is a bed free at Kings and that I have 30 minutes to pack as a car will be ready to take me there. This is soon changed to an hour as it is decided I should travel in a paramedic ambulance. Not quite sure why, but the crew turn up with a stretcher for me to lie on! We leave the RSCH at 4pm and have a horrendous journey, with the M25 and M23 at standstills due to a turned over lorry. Our maximum two hour journey takes three and a half hours! I arrive at the David Mitchell Unit with enormous fat legs, full of fluid. Did the journey really do that? I certainly don’t recall my legs being up earlier today, although I had put on weight since yesterday. This ward is the specialist ward where I will have my transplant. There is a strict regime for patients and visitors and the first thing I notice is that I don’t feel I can wander about with the freedom I have had in the Haematology ward at the RSCH. I have my own room - no. 12 - but unsurprisingly it is not so spacious as my recent experience. The bathroom certainly is no match, except the floor cannot flood! On the plus side, I have a small fridge, good enough for small drinks, the water jug, pots of yogurt and a few bottles of Guinness. The view is non-existent. I look straight out at the side walls of Davidson ward, about 12 feet away together with its scaffolding, as it is being gutted and completely refurbished. I have blood samples taken at 10.15pm and am checked over by the night duty doctor, Rachel, whom I seem to remember from my time on Davidson ward in February. I think it was Rachel who was very good with the cannula. I have my antibiotics and settle down for the night at midnight.
Monday 13th August 2007
There are no changes in my overall situation although my thumb appears to be slightly better - or is that wishful thinking? My weight is 76 kgs again and my blood results are -Wbc: 0.5; Neut:.0.1; Lymph: 0.4; Hbn: 9.9; PLT: 24; and CRP: 23. We are still waiting for news from Kings on bed availability, but nothing transpires. It is my fifth day on Vigam out of the six days of treatment required and I am wondering what a move to Kings will bring if the treatment for the macrophages has finished. Still I guess it would be good for them to see the problem at first hand. Tina is joined by Anna, Nick and Eva as my only visitors today.
Still in Hospital - And it’s Week 3
Monday 30th July to Sunday 12th August 2007
Sunday 12th August 2007
A quiet day. Peter’s birthday, the start of the grouse shooting season (as ever!) and we also moved to Hurst 26 years ago today. My weight is 76 kgs, another move upwards. I see Vicky Tindall and we agree that my humb has swollen a bit more. I have a pre-lunch Guinness with Tina and spend the afternoon typing a long overdue update email to Mavis. Unfortunately after well over an hour of painstaking typing, my screen goes dead and I lose the whole email. l had inadvertently not connected to the mains and, concentrating so much on my typing, I have forgotten to keep an eye on the battery icon. So I had to start all over again. But first it was necessary to have a calming down walk around the unit to let the steam out of me. I was livid with myself. My next blood pressure check shows me “high” - and no wonder! My blood results today are - Wbc: 0.5; Neuts and Lymphs - not separately measured; Hbn: 10.5; PLT: 28; and CRP: 29. I am in bed at midnight.
Saturday 11th August 2007
I am 74.5 kgs this morning - an increase of one and a half kilos on yesterday - and signs that my diet together with the Fortijuices are having a positive impact. I have been trying to have one mid morning, mid afternoon and then mid evening. However hard I try I never manage to prise my morning one from the nurses until 11am at the earliest, taking away my appetite for lunch, which is always at 12md - 12.10pm at the latest. This is after a breakfast that I never seem to get until about 8.30am - and which I make very filling with my yogurt, honey, cereal and fresh cut fruit, plus toast. I find out that the food team’s routine delivery ritual is to start at the far end of oncology for breakfast and end with me. But for lunch they start with me and end up at the far end of oncology. Hence the relatively short morning. Why do they do this? I made some long overdue phone calls to Mary Roberts, Nicola Chittenden and Steve Scott. I have an x-ray on my thumb to check that there is no infection gone into the bone, which it hasn’t. At the same time it is confirmed, what I have suspected for some years, that I have some arthritic degeneration in the base joint of the thumb. Nothing new there then! - but helpful nonetheless. Tina visits late afternoon, followed by Anna, Nick and Eva. I have another new cannula fitted in the evening ahead of my Vigam and anti-biotics. I hear there are no beds at Kings yet for tomorrow. Perhaps Monday or Tuesday there will be one. My blood results today are - Wbc: 0.9; Neut: 0.0.; Lymph: 0.8; Hbn: 11.1; PLT: 36; and
CRP: 43.
Friday 10th August 2007
My weight today is 73 kgs - another steady increase. I see Tim Corbett this morning. He has detected excessive macrophage activity in my bone marrow - which is otherwise pretty empty as previously stated. These macrophages are the scavengers in the bone marrow and they get rid of dead cells and the dross in the bone marrow. However they appear to have go beyond their remit and are gobbling up the neutrophils. My analogy is that they are the road sweepers in the bone marrow but have taken it into their heads to go down the street breaking all the windows! He believes this could have been caused by the recent CMV re-activation and the Valganciclovir treatment for it. The clinical term for for the syndrome is Haemophagocytosis - now there’s a mouthful! The treatment suggested by Kings is doses of immuno-globulin (Vigam) given intra-venously. Kings have suggested that I should be transferred up to them so that can keep an eye on me, given that this is a bit of a complication on top of my severe neutropenia. Besides these macrophages have to be back under control before my transplant could go ahead. In the overall scheme of things, my infected thumb appears to be just a sideshow. Having said that, the small scab that had formed over its head has now been washed off. Tina visits at 11.15am and an hour later my blood transfusions start again, with two more units today, making four in all. I get visits from Mia Morris and Linda Bell after lunch. My anti-biotic, Tazocin, is replaced by Meropenam together with Teicoplenin. My Vigam starts at 8pm but is a really fiddly process as it only comes in small bottles and I have to have six of them as one dose, each one taking 30 minutes. My blood counts today are - Wbc: 0.4; Neut: 0.1; Hbn: 9.8; PLT: 35; and CRP: 46. I doze on the bed until 12.50am until tucking down.
Thursday 9th August 2007
It’s Eva’s first birthday! - and as it is Thursday I see Paul Hill today. He tells me that the bone marrow is “empty” - no sign of CLL (good), but no sign of neutrophils either (not so good). Paul believes that Steve Devereux will want to bring forward my transplant and not give me the six weeks break we had planned because of my low immune system. I am due to see Steve Devereux next Friday at his clinic, so I would think more will be revealed then. I am now trusted with the Itroconozole myself as the nurses keep forgetting the timings! As is the norm in hospitals, ward orderlies have to bring a jug of water at breakfast time to every patient, but it is never cold enough for me at the start and gets warmer as the day goes by. So the discovery at last that there is a chilled water machine in the entry lobby to the floor is a great find. At last I can have drinkable cold water! My mouth is now much better and I decide that I don’t need to use the Difflam mouthwash any more. I have a visit from Steve Pitt and then Sr. Peter for Holy Communion. Tina is in to see me about 4.45pm after seeing Nicola Worster, the Haemotology Nurse Specialist, for a helpful chat. My weight today has gone up to 72 kgs and my blood results are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 8.4; PLT: 41; CRP: 70. My haemoglobin level means I am in need of a blood transfusion - four units in fact - and I get the first two units this evening.
Wednesday 8th August 2007
It is a big day for visitors - Hilda and Barry, Bill Swallow, Michel and then Erik and Heather. My 7pm Tazocin is very painful, so I am recannulated after only 24 hours. Tina has a great day in London with Anna and Charrise - a late birthday present. My thumb is changing in appearance, with the crusty head flaking off to leave a very small hole. It is still swollen, red and very tender. I am 71 kgs again today. My blood counts are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 9.1; PLT: 54; and CRP: 74. The CRP reading is a big increase from yesterday and - I guess - reflects the level of infection in my thumb.
Tuesday 7th August 2007
I am 71 kgs today, so perhaps the Fortijuice is starting to work? I see Tim Corbett at 9.30am. He surmises that any neutrophils being produced are going to fight the infection in my thumb and consequently prescribes intra-veinous anti-biotics Tazocin and Teicoplanin to deal with it. He also replaces Omeprazole with Ramitodine, as the former can have immune system suppressing side effects. I am to be here for another 5 days at least to see how this treatment progresses. My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.5; Hbn: 8.4; PLT: 57; and CRP: 33. I am cannulated and have my first doses of Tazocin and Teicoplanin and then go for my Pentamidine nebulizer. This is followed by the taking of a bone marrow sample under a sedative. I hardly knew a thing, wake an hour or so later and doze for the rest of the after. I find out later that I was awake during the whole procedure, even discussing what is going on with Vicki Tindall and the nurses. The effect of the sedative is not to put the patient to sleep, but to wipe out the memory of what is being experienced. How does that happen? I don’t know but it certainly works! I send a text message out to my “health update network” of family and friends and get lots of replies including a great one from Tim Godwin, on holiday in Switzerland.
Monday 6th August 2007
Ros Johnston tells me that my white cell count is 1.3 and we are waiting for the detailed breakdown, which is subject of a manual count. If I have 0.4 neutrophils again I can go! But this is a hopelessly false dawn, because when I eventually get the breakdown - not until 6pm(!) - my neutrophils are back down to 0.1 - damn it! On top of that the white cell count is actually down as well, so where 1.3 came from - who knows. She says that my thumb needs looking at in a few days if I am discharged and may need lancing - ouch!! I have visits from Sarah and Paul and Mia Morris ahead of Tina’s coming at her usual time. My full blood results are - Wbc: 1.0; Neut: 0.1; Lymph: 0.8; Hbn: 10.3; PLT: 73; and CRP: 31. My weight today is still 70 kgs. It has been a fairly tense day waiting for, what I had hoped would be, a successful result, so - in the immortal words of the football team captain losing by a dodgy penalty - I was “gutted”. Where do we go from here? On the positive side, however, my mouth seems to be getting a bit better. I spend the evening reading.
Sunday 12th August 2007
A quiet day. Peter’s birthday, the start of the grouse shooting season (as ever!) and we also moved to Hurst 26 years ago today. My weight is 76 kgs, another move upwards. I see Vicky Tindall and we agree that my humb has swollen a bit more. I have a pre-lunch Guinness with Tina and spend the afternoon typing a long overdue update email to Mavis. Unfortunately after well over an hour of painstaking typing, my screen goes dead and I lose the whole email. l had inadvertently not connected to the mains and, concentrating so much on my typing, I have forgotten to keep an eye on the battery icon. So I had to start all over again. But first it was necessary to have a calming down walk around the unit to let the steam out of me. I was livid with myself. My next blood pressure check shows me “high” - and no wonder! My blood results today are - Wbc: 0.5; Neuts and Lymphs - not separately measured; Hbn: 10.5; PLT: 28; and CRP: 29. I am in bed at midnight.
Saturday 11th August 2007
I am 74.5 kgs this morning - an increase of one and a half kilos on yesterday - and signs that my diet together with the Fortijuices are having a positive impact. I have been trying to have one mid morning, mid afternoon and then mid evening. However hard I try I never manage to prise my morning one from the nurses until 11am at the earliest, taking away my appetite for lunch, which is always at 12md - 12.10pm at the latest. This is after a breakfast that I never seem to get until about 8.30am - and which I make very filling with my yogurt, honey, cereal and fresh cut fruit, plus toast. I find out that the food team’s routine delivery ritual is to start at the far end of oncology for breakfast and end with me. But for lunch they start with me and end up at the far end of oncology. Hence the relatively short morning. Why do they do this? I made some long overdue phone calls to Mary Roberts, Nicola Chittenden and Steve Scott. I have an x-ray on my thumb to check that there is no infection gone into the bone, which it hasn’t. At the same time it is confirmed, what I have suspected for some years, that I have some arthritic degeneration in the base joint of the thumb. Nothing new there then! - but helpful nonetheless. Tina visits late afternoon, followed by Anna, Nick and Eva. I have another new cannula fitted in the evening ahead of my Vigam and anti-biotics. I hear there are no beds at Kings yet for tomorrow. Perhaps Monday or Tuesday there will be one. My blood results today are - Wbc: 0.9; Neut: 0.0.; Lymph: 0.8; Hbn: 11.1; PLT: 36; and
CRP: 43.
Friday 10th August 2007
My weight today is 73 kgs - another steady increase. I see Tim Corbett this morning. He has detected excessive macrophage activity in my bone marrow - which is otherwise pretty empty as previously stated. These macrophages are the scavengers in the bone marrow and they get rid of dead cells and the dross in the bone marrow. However they appear to have go beyond their remit and are gobbling up the neutrophils. My analogy is that they are the road sweepers in the bone marrow but have taken it into their heads to go down the street breaking all the windows! He believes this could have been caused by the recent CMV re-activation and the Valganciclovir treatment for it. The clinical term for for the syndrome is Haemophagocytosis - now there’s a mouthful! The treatment suggested by Kings is doses of immuno-globulin (Vigam) given intra-venously. Kings have suggested that I should be transferred up to them so that can keep an eye on me, given that this is a bit of a complication on top of my severe neutropenia. Besides these macrophages have to be back under control before my transplant could go ahead. In the overall scheme of things, my infected thumb appears to be just a sideshow. Having said that, the small scab that had formed over its head has now been washed off. Tina visits at 11.15am and an hour later my blood transfusions start again, with two more units today, making four in all. I get visits from Mia Morris and Linda Bell after lunch. My anti-biotic, Tazocin, is replaced by Meropenam together with Teicoplenin. My Vigam starts at 8pm but is a really fiddly process as it only comes in small bottles and I have to have six of them as one dose, each one taking 30 minutes. My blood counts today are - Wbc: 0.4; Neut: 0.1; Hbn: 9.8; PLT: 35; and CRP: 46. I doze on the bed until 12.50am until tucking down.
Thursday 9th August 2007
It’s Eva’s first birthday! - and as it is Thursday I see Paul Hill today. He tells me that the bone marrow is “empty” - no sign of CLL (good), but no sign of neutrophils either (not so good). Paul believes that Steve Devereux will want to bring forward my transplant and not give me the six weeks break we had planned because of my low immune system. I am due to see Steve Devereux next Friday at his clinic, so I would think more will be revealed then. I am now trusted with the Itroconozole myself as the nurses keep forgetting the timings! As is the norm in hospitals, ward orderlies have to bring a jug of water at breakfast time to every patient, but it is never cold enough for me at the start and gets warmer as the day goes by. So the discovery at last that there is a chilled water machine in the entry lobby to the floor is a great find. At last I can have drinkable cold water! My mouth is now much better and I decide that I don’t need to use the Difflam mouthwash any more. I have a visit from Steve Pitt and then Sr. Peter for Holy Communion. Tina is in to see me about 4.45pm after seeing Nicola Worster, the Haemotology Nurse Specialist, for a helpful chat. My weight today has gone up to 72 kgs and my blood results are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 8.4; PLT: 41; CRP: 70. My haemoglobin level means I am in need of a blood transfusion - four units in fact - and I get the first two units this evening.
Wednesday 8th August 2007
It is a big day for visitors - Hilda and Barry, Bill Swallow, Michel and then Erik and Heather. My 7pm Tazocin is very painful, so I am recannulated after only 24 hours. Tina has a great day in London with Anna and Charrise - a late birthday present. My thumb is changing in appearance, with the crusty head flaking off to leave a very small hole. It is still swollen, red and very tender. I am 71 kgs again today. My blood counts are - Wbc: 0.6; Neut: 0.0; Lymph: 0.4; Hbn: 9.1; PLT: 54; and CRP: 74. The CRP reading is a big increase from yesterday and - I guess - reflects the level of infection in my thumb.
Tuesday 7th August 2007
I am 71 kgs today, so perhaps the Fortijuice is starting to work? I see Tim Corbett at 9.30am. He surmises that any neutrophils being produced are going to fight the infection in my thumb and consequently prescribes intra-veinous anti-biotics Tazocin and Teicoplanin to deal with it. He also replaces Omeprazole with Ramitodine, as the former can have immune system suppressing side effects. I am to be here for another 5 days at least to see how this treatment progresses. My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.5; Hbn: 8.4; PLT: 57; and CRP: 33. I am cannulated and have my first doses of Tazocin and Teicoplanin and then go for my Pentamidine nebulizer. This is followed by the taking of a bone marrow sample under a sedative. I hardly knew a thing, wake an hour or so later and doze for the rest of the after. I find out later that I was awake during the whole procedure, even discussing what is going on with Vicki Tindall and the nurses. The effect of the sedative is not to put the patient to sleep, but to wipe out the memory of what is being experienced. How does that happen? I don’t know but it certainly works! I send a text message out to my “health update network” of family and friends and get lots of replies including a great one from Tim Godwin, on holiday in Switzerland.
Monday 6th August 2007
Ros Johnston tells me that my white cell count is 1.3 and we are waiting for the detailed breakdown, which is subject of a manual count. If I have 0.4 neutrophils again I can go! But this is a hopelessly false dawn, because when I eventually get the breakdown - not until 6pm(!) - my neutrophils are back down to 0.1 - damn it! On top of that the white cell count is actually down as well, so where 1.3 came from - who knows. She says that my thumb needs looking at in a few days if I am discharged and may need lancing - ouch!! I have visits from Sarah and Paul and Mia Morris ahead of Tina’s coming at her usual time. My full blood results are - Wbc: 1.0; Neut: 0.1; Lymph: 0.8; Hbn: 10.3; PLT: 73; and CRP: 31. My weight today is still 70 kgs. It has been a fairly tense day waiting for, what I had hoped would be, a successful result, so - in the immortal words of the football team captain losing by a dodgy penalty - I was “gutted”. Where do we go from here? On the positive side, however, my mouth seems to be getting a bit better. I spend the evening reading.
Back in Hospital - Week 2
Monday 30th July to Sunday 5th August 2007
Sunday 5th August 2007
I have had a little problem with the thumb on my right hand. It has started to redden and swell over recent days on the right side. I seem to recall noticing a small cut there in the early part of the week of my Methylprednisolone and I conclude that it is probably as a result of catching it on a thorn when I did some rose pruning on, I believe, the Monday of that week - despite wearing heavy duty gloves. I have already drawn the consultants’ attention to it as it has started to ache a bit as well as swell. The swelling has now become more clearly defined and the tip - or head - has changed to give the appearance of its being infected. Otherwise there is no change as far as my discussions with Paul Hill are concerned. Sr. Peter calls to give me Holy Communion and meets Tina for the first time. We are then joined by Tony and Pam - which was lovely. I get two days’ blood results at the same time. They are - Wbc: 1.2 and 1.4; Neut: 0.3 and 0.4; Lymph: 0.9 and 1.0; Hbn: 10.8 and 10.5; PLT: 92 and 85; and CRP: 12 and 20. My weight is 70 kgs again.
So great news! An increase in the neutrophil count for each of the last three days. This makes me feel very good, especially after having such a “cheesed - off” week. I can at last see a proverbial light at the end of the tunnel. Afternoon and evening spent reading, dozing and doing Sudoku.
Saturday 4th August 2007
Tina is with me from 11.15am with post and gifts, including a jar of “Life Mel” honey from Evelyn Hole - plus the article in the magazine which gave her the idea of getting some for me. It was extremely successful in getting one person’s immune system back up and running and he out of bed and back on the golf course. She could not have known about my non-existent immune system at the time. How timely and how kind! I am seen by Paul Hill. No change. My weight has stayed the same at 70 kgs.
Friday 3rd August 2007
I am seen by Tim Corbett. As the oedema - and my weight - has reduced so much since my admission he halves my Furosimide dose. He also prescribes a 50% increase in my GCSF dosage in an effort to get my neutrophil count moving upwards. He mentions the possibility of my bone marrow transplant being brought forward because of the potential problem of further neutropenia. I hear news from Peter that Suzanne had a mild heart attack in the night and is now in Darent Valley Hospital at least over the weekend and seeing the cardiologist on Monday. That is a shock! Tina, Anna and Nick visit with Eva.
My blood results today are - Wbc: 1.3; Neut: 0.2; Lymph: 1.0; Hbn: 11.6; PLT: 113; and CRP: 14. My weight is 70 kgs.
Thursday 2nd August 2007
If it’s Thursday, it must be Paul Hill! It’s his day to do the Brighton clinic. My neutrophils are still on the floor and he says that if they are still down there after the weekend then they will have a look see what is happening in the bone marrow. He leaves me with a confident “See you at the weekend”. I have a visit from Jim Rodgers with info on their weekend in Paris, then Sister Peter arrives to give me Holy Communion. It’s a day of visits as I have Peter and Suzanne at 2.30pm., Terry and Les at 4.15pm and then Tina after they have just left. Fortunately my energy levels are high, although I spend the evening in “rest” mode, with bed at 12.30am. My weight today has dropped to 69.5 kgs - which turns out to be the lowest my weight gets. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 10.5; PLT:89; and CRP: 17.
Wednesday 1st August 2007
My weight is 70 kgs again, so it seems to have stabilised at last. Great minds think alike! I am taken off Septrin and I have an appointment next week for a Pentamidine nebulizer. In an effort to turn round my weight loss I have a Fortijuice - from the same stable as Fortifresh but juice based - and a chocolate brownie in the morning. But it is 11am when I have them and I get my lunch at 12.10am prompt(!), so my appetite for lunch is much reduced and I save my pudding to later. I have got to work this one out! As it is Wednesday, Tina is with me from 11.30am today and shares my disappointment that yesterday’s neutrophil count was a false hope. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.2; PLT: 98; and CRP: 12. I finish “Lost Continent” and go on to “Neither Here Nor There”. I have two more Fortijuice drinks through the day. For the first time I am getting really cheesed off over my immune system sticking stubbornly on the floor and nothing much being suggested to shift it. When I was in hospital back in March / April at least I could see the need for it, as I was getting i/v anti-virals and anti-biotics for my chest infection right through the five weeks. But this time I seem to be couped up just waiting for something to happen that might or might not and it’s getting tedious.
Tuesday 31st July 2007
My weight is still 70 kgs. Tim Corbett leads the round today on his first day back from holiday. He checks me over thoroughly, including my mouth. He is not sure that the ulcers may not be viral, but bacterial and wants some swabs taken. He also prescribes me additional anti-biotics - Metronidazole and Augmentin - plus Folic Acid as a vitamin. He remarks on my weight loss of 5 kgs over the past week. Most of that will have been fluid - and I still have a little oedema in my ankles - but also agrees that I will have lost body mass and muscle weight. He also concurs on the possible reasons for the neutrophils being suppressed adding that some of my medications could also be contributing. This made me later recall that Septrin was considered to hinder neutrophil recovery back in February when I was going through a period of neutropenia. I was taken off Septrin and had a Pentamidine nebulizer instead, followed by another one in March when I was in here with CMV.
My blood results today are:
Wbc: 0.8; Neut: 0.2; Lymph: 0.5; Hbn: 12.5; PLT: 138; and CRP: 16. Nurse Clare discusses my nutritional needs with me. I am asked complete a Food Record Chart and she gives me a Fortifresh raspberry flavoured yoghurt style drink to try out. It is 200 ml of thick liquid, contains 300 calories and is quite nice. I have a blackcurrant flavoured one in the evening. Apparently three per day will help build me up quite a bit.
Matthew visits me in the morning, which is great. He is still very busy with the kitchen / dining room but at last is seeing things take shape. Lots of the kitchen is now in place and they have running hot and cold water in there at last! Tina comes in about 4.45pm. She is meeting Marj Holloway in Lewes for something to eat at 7pm. Tina is much relieved to hear that my neutrophil count has gone to 0.2.
Had I not been here in hospital we would have gone today to a meeting of the area CLL Association being held in Hampshire. This is a shame as I think we would have found it helpful. I have now managed to completely catch up with my blog - hurray! - so I resume Lost Continent until bed at 12.20am.
Monday 30th July 2007
I am awake and showered before breakfast for the first time, I think. My weight is 70 kgs - yes 70 kgs! How can this be? I later have a discussion with Ros Johnston who tells me I cannot lose two and a half kilos in 24 hours. I don’t dispute the medical argument but my scales are correct and they are the same ones I have used each day this week. I check my weight on the platform scales in the Day Unit and find no difference. So how is this?
My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.1; PLT: 102; and
CRP: 17. Nurse Miriam, who has been very attentive to my needs, is anxious to ensure that my hip abrasion has not worsened, so she checks it and replaces the dressing. She also wants to refer me to the nutritionist because of my weight loss. I agree. I have a visit from Derek Oakensen is the afternoon. He updates me on the latest with his redundancy saga. Fascinatingly awful! Tina comes in at 4.30pm. She has been in touch with Vikki Bevan for a chat about things. While she goes to buy a coffee down in the shop, Vikki calls on her mobile and I take it. Steve Devereux reckons my neutrophils are being suppressed by the after effects of taking the Valganciclovir, coupled with a cumulative effect of the Campath. She just wanted to give Tina some reassurance on that.
Sunday 5th August 2007
I have had a little problem with the thumb on my right hand. It has started to redden and swell over recent days on the right side. I seem to recall noticing a small cut there in the early part of the week of my Methylprednisolone and I conclude that it is probably as a result of catching it on a thorn when I did some rose pruning on, I believe, the Monday of that week - despite wearing heavy duty gloves. I have already drawn the consultants’ attention to it as it has started to ache a bit as well as swell. The swelling has now become more clearly defined and the tip - or head - has changed to give the appearance of its being infected. Otherwise there is no change as far as my discussions with Paul Hill are concerned. Sr. Peter calls to give me Holy Communion and meets Tina for the first time. We are then joined by Tony and Pam - which was lovely. I get two days’ blood results at the same time. They are - Wbc: 1.2 and 1.4; Neut: 0.3 and 0.4; Lymph: 0.9 and 1.0; Hbn: 10.8 and 10.5; PLT: 92 and 85; and CRP: 12 and 20. My weight is 70 kgs again.
So great news! An increase in the neutrophil count for each of the last three days. This makes me feel very good, especially after having such a “cheesed - off” week. I can at last see a proverbial light at the end of the tunnel. Afternoon and evening spent reading, dozing and doing Sudoku.
Saturday 4th August 2007
Tina is with me from 11.15am with post and gifts, including a jar of “Life Mel” honey from Evelyn Hole - plus the article in the magazine which gave her the idea of getting some for me. It was extremely successful in getting one person’s immune system back up and running and he out of bed and back on the golf course. She could not have known about my non-existent immune system at the time. How timely and how kind! I am seen by Paul Hill. No change. My weight has stayed the same at 70 kgs.
Friday 3rd August 2007
I am seen by Tim Corbett. As the oedema - and my weight - has reduced so much since my admission he halves my Furosimide dose. He also prescribes a 50% increase in my GCSF dosage in an effort to get my neutrophil count moving upwards. He mentions the possibility of my bone marrow transplant being brought forward because of the potential problem of further neutropenia. I hear news from Peter that Suzanne had a mild heart attack in the night and is now in Darent Valley Hospital at least over the weekend and seeing the cardiologist on Monday. That is a shock! Tina, Anna and Nick visit with Eva.
My blood results today are - Wbc: 1.3; Neut: 0.2; Lymph: 1.0; Hbn: 11.6; PLT: 113; and CRP: 14. My weight is 70 kgs.
Thursday 2nd August 2007
If it’s Thursday, it must be Paul Hill! It’s his day to do the Brighton clinic. My neutrophils are still on the floor and he says that if they are still down there after the weekend then they will have a look see what is happening in the bone marrow. He leaves me with a confident “See you at the weekend”. I have a visit from Jim Rodgers with info on their weekend in Paris, then Sister Peter arrives to give me Holy Communion. It’s a day of visits as I have Peter and Suzanne at 2.30pm., Terry and Les at 4.15pm and then Tina after they have just left. Fortunately my energy levels are high, although I spend the evening in “rest” mode, with bed at 12.30am. My weight today has dropped to 69.5 kgs - which turns out to be the lowest my weight gets. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 10.5; PLT:89; and CRP: 17.
Wednesday 1st August 2007
My weight is 70 kgs again, so it seems to have stabilised at last. Great minds think alike! I am taken off Septrin and I have an appointment next week for a Pentamidine nebulizer. In an effort to turn round my weight loss I have a Fortijuice - from the same stable as Fortifresh but juice based - and a chocolate brownie in the morning. But it is 11am when I have them and I get my lunch at 12.10am prompt(!), so my appetite for lunch is much reduced and I save my pudding to later. I have got to work this one out! As it is Wednesday, Tina is with me from 11.30am today and shares my disappointment that yesterday’s neutrophil count was a false hope. My blood results today are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.2; PLT: 98; and CRP: 12. I finish “Lost Continent” and go on to “Neither Here Nor There”. I have two more Fortijuice drinks through the day. For the first time I am getting really cheesed off over my immune system sticking stubbornly on the floor and nothing much being suggested to shift it. When I was in hospital back in March / April at least I could see the need for it, as I was getting i/v anti-virals and anti-biotics for my chest infection right through the five weeks. But this time I seem to be couped up just waiting for something to happen that might or might not and it’s getting tedious.
Tuesday 31st July 2007
My weight is still 70 kgs. Tim Corbett leads the round today on his first day back from holiday. He checks me over thoroughly, including my mouth. He is not sure that the ulcers may not be viral, but bacterial and wants some swabs taken. He also prescribes me additional anti-biotics - Metronidazole and Augmentin - plus Folic Acid as a vitamin. He remarks on my weight loss of 5 kgs over the past week. Most of that will have been fluid - and I still have a little oedema in my ankles - but also agrees that I will have lost body mass and muscle weight. He also concurs on the possible reasons for the neutrophils being suppressed adding that some of my medications could also be contributing. This made me later recall that Septrin was considered to hinder neutrophil recovery back in February when I was going through a period of neutropenia. I was taken off Septrin and had a Pentamidine nebulizer instead, followed by another one in March when I was in here with CMV.
My blood results today are:
Wbc: 0.8; Neut: 0.2; Lymph: 0.5; Hbn: 12.5; PLT: 138; and CRP: 16. Nurse Clare discusses my nutritional needs with me. I am asked complete a Food Record Chart and she gives me a Fortifresh raspberry flavoured yoghurt style drink to try out. It is 200 ml of thick liquid, contains 300 calories and is quite nice. I have a blackcurrant flavoured one in the evening. Apparently three per day will help build me up quite a bit.
Matthew visits me in the morning, which is great. He is still very busy with the kitchen / dining room but at last is seeing things take shape. Lots of the kitchen is now in place and they have running hot and cold water in there at last! Tina comes in about 4.45pm. She is meeting Marj Holloway in Lewes for something to eat at 7pm. Tina is much relieved to hear that my neutrophil count has gone to 0.2.
Had I not been here in hospital we would have gone today to a meeting of the area CLL Association being held in Hampshire. This is a shame as I think we would have found it helpful. I have now managed to completely catch up with my blog - hurray! - so I resume Lost Continent until bed at 12.20am.
Monday 30th July 2007
I am awake and showered before breakfast for the first time, I think. My weight is 70 kgs - yes 70 kgs! How can this be? I later have a discussion with Ros Johnston who tells me I cannot lose two and a half kilos in 24 hours. I don’t dispute the medical argument but my scales are correct and they are the same ones I have used each day this week. I check my weight on the platform scales in the Day Unit and find no difference. So how is this?
My blood results are: Wbc: 0.6; Neut: 0.1; Lymph: 0.4; Hbn: 11.1; PLT: 102; and
CRP: 17. Nurse Miriam, who has been very attentive to my needs, is anxious to ensure that my hip abrasion has not worsened, so she checks it and replaces the dressing. She also wants to refer me to the nutritionist because of my weight loss. I agree. I have a visit from Derek Oakensen is the afternoon. He updates me on the latest with his redundancy saga. Fascinatingly awful! Tina comes in at 4.30pm. She has been in touch with Vikki Bevan for a chat about things. While she goes to buy a coffee down in the shop, Vikki calls on her mobile and I take it. Steve Devereux reckons my neutrophils are being suppressed by the after effects of taking the Valganciclovir, coupled with a cumulative effect of the Campath. She just wanted to give Tina some reassurance on that.
Back in Hospital Yet Again
Saturday 21st to Sunday 29th July 2007
Sunday 29th July 2007
My weight today is 72.5 kgs and my blood results are given to me as: Wbc: 0.5;
Neut: 0.0; Hbn: 11.7; PLT: 90; and CRP: 22. I have a very quick visit from Ros Johnston and later Sister Peter gives me Holy Communion. She is a delight! Tina is here at midday and then leaves for Matthew’s to give the girlies a walk out to the park. I spend the rest of the day reading and resting.
Saturday 28th July 2007
My weight this morning is 73 kgs and today’s blood results are Wbc: 0.7; Neut: 0.1; Lymph: 0.5; Hbn: 11.7; PLT: 92; and CRP: 32. I am seen by Ros Johnston at 9am - no change. My hip abrasion has reddened and may have a slight infection there. My walk back from the newspaper shop is really hard again. I really need to strengthen my legs a lot. Tina visits at 12.30pm. I spend the afternoon reading and blogging. I am visited by Michel Olsziewski in the early evening. I finish “Bury My Heart at Wounded Knee” and move on to something less dramatic, “Lost Continent” by Bill Bryson. This was the first Bryson I ever read - when we were in New Zealand back in 1995.
Friday 27th July 2007
I am awake at 6.15am again and have my blood results by 9.15am - a record! They are Wbc: 0.5; Neut: 0.1; Lymph: 0.3; Hbn: 10.8; PLT: 68. I see John Duncan at 10.15am. He says stop the Tazocin and go on to Ciprofloxacin tablets, but no real change in my status. I have a visit from Vincent Meagher in the afternoon and then Tina is with me for an hour or so. I have an evening visit from Fr David Foley, after I eventually remembered
to call him. Sr Peter will come on Sunday. I read for the rest of the evening and get to bed at 12.30am.
Thursday 26th July 2007
I am awake at 6.15am and feeling good on the strength of three units of blood. My fourth unit is started at 7am. My weight this morning is 73.5 kgs. I am seen by Paul Hill. He states the same as John Duncan. I am profoundly neutropenic and they want to see a rise in the neutrophils before I can be discharged. He will query with Steve Devereux whether there is a need to complete the final four doses in the Campath course, given the likelihood they would probably suppress the neutrophils yet again and cause more trouble than it is worth. I have visits from Jim Rodgers and Bill Swallow. They are both suitably impressed by my surroundings! My blood results are: Wbc: 0.5; Neut: 0.2; Lymph 0.2; Hbn: 11.9; PLT: 72; and CRP: 26. My mouth has become worse with another ulcer on my gum and the overall soreness still very much there. The Tour de France has dissolved into chaos and farce with both the tour favourite - Vinokourov - plus his whole team, the Yellow Jersey, Rasmussen, and another team being kicked off for drugs violations. I doze the evening away from 9.30pm to 1am before going to bed.
Wednesday 25th July 2007
I am awake at 5.45am and reading. “Bury My Heart at Wounded Knee” is compelling
reading but immensely sad. I am 73 kgs today. I am seen by John Duncan. The GCSF and Tazocin anti-biotic are to continue. I will have to stay until my neutrophils show significant signs of improvement and there is no clear indication how long that might take. If I escape by the weekend, it may be a bonus. Doh! I mention some scratch marks on my hip which I must have done one night earlier on in this time in hospital. I am to have it dressed to avoid possible infection. There is no newspaper trolley service up here - which seems a great pity - so I walk down to the shop right at the front of the hospital. The walk back is a slog at it is all up stairs and steps. However, I need to get some strength back into my legs, so I guess it is good for me. I buy a small Lucozade - original flavour - as my mouth is tasting grotty. It doesn’t work for me. Tina arrives at 4pm and - “surprise, surprise” - she has got her camera back courtesy of Inspector Vanholme of the Ghent Police. Isn’t that brilliant! After waiting all day, at last my blood transfusion starts at 4.30pm. I receive three units by 12.30am and we stop for the night. My blood results today are: Wbc: 0.5; Neut: 0.0; Hbn: 8.6; and PLT: 63.
Tuesday 24th July 2007
We have a bright morning. My weight is 74 kgs still. I am seen by Panos. They want to keep me in until Thursday at least to see my CRP and CMV go down, especially with such a low white cell count. They will also be moving me to the Haematology Ward as they have a bed free at last. Tina arrives at 4.30pm and at the same time we learn that I have a “zero” CMV result - yippee! So stop the Valganciclovir and resume Aciclovir. At 6pm I am trundled up to Haematology on the 9th floor of the Millennium Wing - a floor above the Day Unit. I am now in the lap of luxury. I have my own room, complete with toilet and shower, plenty of space, air conditioning and a window facing north so the room temperature is good. This one of only six beds on the Haematology Ward, hence the pressure on beds previously. I get my blood results from a very helpful Staff Nurse Jason; they are: Wbc: 0.4; Neut: 0.0; Hbn: 8.2; PLT: 52; and CRP: 36. At last I am able to get my blood results in full on a daily basis without feeling I am stealing the crown jewels. It is my blood after all! I am being lined up for four units of blood tomorrow. I read and doze to 1am and then sleep well.
Monday 23rd July 2007
I sleep quite well despite my neighbour and am awake at 6.15am. I go and get my Itroconazole and am given my early dose of Tazocin. I am now comfortable walking without a zimmer. I get a new cannula inserted on my right elbow and have a visit from the ward pharmacist to run through my medications as there has been some slight confusion with the ward staff. I find this quite reassuring as I am on a ward where the staff are unfamiliar with my medical condition etc. My weight today is 74 kgs. I am seen by Ros Johnston and the team. I do not get the full details - again - but my Wbc is 0.7, I have no Europhiles, my CRP is 75 and they have received a CMV reading of 153 - down significantly from the initial 6955! The likelihood is continue with the Tazocin for two more days and then we can resume the Campath to finish the programme. I have a visit from Anna and Eva at 1.30pm - just back from Salzburg. The Staff Nurse advises not a good idea having Eva here as there is diarrhoea on the ward. Now they tell me! I ring the Clinical Trials team at Kings to warn them that I will not be finished my Campath in time for the final staging tests scheduled for a week’s time. Tina comes in at 4.30pm. It is raining! At least that keeps the temperature down in the room - and gives the seagulls outside a bit of a soaking. They queue up by the window to be fed by my neighbour’s visitors!
Sunday 22nd July 2007
I am awake at 2am after a distressing dream about Tina - more Methylpred side effects I guess - and very upsetting. I manage to get back to sleep and go through to 6am but have a sweaty episode in the middle of it. The staff nurses on the ward have taken the easy route with my medications and have left it all to me. This partly because some of the items written up on my admission record by the doctor yesterday are incorrect and it has confused them. The pain and movement in my legs seem to be getting a bit better already and the fluid content also appears to have reduced. My weight is still 75 kgs today. Tina and Matthew arrive about the same time - 11.45am, but at the same time as the porter comes to take me for my x-ray, so they go for a coffee. The x-ray takes longer than expected and it is time for lunch when I get back, so I don’t have much time with them.
Shortly after that I see Paul Hill. My Wbc is 0.5, my neutrophils are none existent, my Hbn: 8.8 and my CRP is 139. He tells me that I need a blood transfusion tomorrow. My temperature is still a little high in the morning - 37.3 - but drops to 36 when checked later. At 4.30pm I am moved from the large ward to a side ward containing three beds. It is like a greenhouse as it faces south and west and the sun has been out all day! But hey - at least I am out of the madhouse, although you wouldn’t know it with the fellow in the bed next to me! He is coughing and spluttering day and night and calling out “Nurse” all the time as well! Before Tina goes I have the bright idea that I should get a £3.50 card to watch the Grand Prix -and maybe something else - on the Patient Line TV. What a rip off and what a waste if time and effort. I get no response from the TV and it takes half an hour to find out that the TV cannot read the card have inserted. By the time someone comes to fix it, the race is almost over! I get my money back instead and revert to reading. I finish “Small Island“ and start “Bury My Heart and Wounded Knee” by Dee Brown.
Saturday 21st July 2007
Here I am in Catherine James ward for an indeterminate length of time. It is a ward for men with respiratory problems. I am in a room of seven beds with five men clearly over 80 years and most looking rather poorly. The other patient has the most severe problems and seems to only know one word - “nurse“ - day and night! The strength in my legs has gone so much that I have to use a zimmer frame to get to the toilet out in the corridor. I even have to resort to a commode on one occasion! My lack of dignity knows no bounds!
Having had my first dose of Tazocin at 6pm Friday the ward doesn’t get its act together for my second dose until 1045am Saturday - and I was supposed to have it every six hours. Paul Hill is the weekend consultant and I manage to elicit from him my blood results from him, as none of the ward nurses are allowed access to such information from the hospital computer system. Would you believe that? Anyway they are: Wbc: 0.8; Neut: 0.3; Hbn: 9.2; PLT: 52; and CRP 229. So I am rather seriously neutropenic. My weight today is 75 kgs. Tina finds the ward more depressing than I do, but it is really rather crummy. I quickly find I am getting fed with being called “Dear” and “My darling” by nurses and phlebotomists and I bite back, both politely and somewhat more vigorously. In my personal experience, women have been patronised by men, especially policeMEN, for generations. Having now rid themselves of much of that stereotyping through 30+ years of equality policies etc., I find it amazing that it should be perpetuated in the opposite direction, through lack of thought I am sure. Consider that the rules on one ward I have been in this year state very clearly that each patient is an individual and should be respected as such. STOP! Get off the soapbox - lecture over!
Sunday 29th July 2007
My weight today is 72.5 kgs and my blood results are given to me as: Wbc: 0.5;
Neut: 0.0; Hbn: 11.7; PLT: 90; and CRP: 22. I have a very quick visit from Ros Johnston and later Sister Peter gives me Holy Communion. She is a delight! Tina is here at midday and then leaves for Matthew’s to give the girlies a walk out to the park. I spend the rest of the day reading and resting.
Saturday 28th July 2007
My weight this morning is 73 kgs and today’s blood results are Wbc: 0.7; Neut: 0.1; Lymph: 0.5; Hbn: 11.7; PLT: 92; and CRP: 32. I am seen by Ros Johnston at 9am - no change. My hip abrasion has reddened and may have a slight infection there. My walk back from the newspaper shop is really hard again. I really need to strengthen my legs a lot. Tina visits at 12.30pm. I spend the afternoon reading and blogging. I am visited by Michel Olsziewski in the early evening. I finish “Bury My Heart at Wounded Knee” and move on to something less dramatic, “Lost Continent” by Bill Bryson. This was the first Bryson I ever read - when we were in New Zealand back in 1995.
Friday 27th July 2007
I am awake at 6.15am again and have my blood results by 9.15am - a record! They are Wbc: 0.5; Neut: 0.1; Lymph: 0.3; Hbn: 10.8; PLT: 68. I see John Duncan at 10.15am. He says stop the Tazocin and go on to Ciprofloxacin tablets, but no real change in my status. I have a visit from Vincent Meagher in the afternoon and then Tina is with me for an hour or so. I have an evening visit from Fr David Foley, after I eventually remembered
to call him. Sr Peter will come on Sunday. I read for the rest of the evening and get to bed at 12.30am.
Thursday 26th July 2007
I am awake at 6.15am and feeling good on the strength of three units of blood. My fourth unit is started at 7am. My weight this morning is 73.5 kgs. I am seen by Paul Hill. He states the same as John Duncan. I am profoundly neutropenic and they want to see a rise in the neutrophils before I can be discharged. He will query with Steve Devereux whether there is a need to complete the final four doses in the Campath course, given the likelihood they would probably suppress the neutrophils yet again and cause more trouble than it is worth. I have visits from Jim Rodgers and Bill Swallow. They are both suitably impressed by my surroundings! My blood results are: Wbc: 0.5; Neut: 0.2; Lymph 0.2; Hbn: 11.9; PLT: 72; and CRP: 26. My mouth has become worse with another ulcer on my gum and the overall soreness still very much there. The Tour de France has dissolved into chaos and farce with both the tour favourite - Vinokourov - plus his whole team, the Yellow Jersey, Rasmussen, and another team being kicked off for drugs violations. I doze the evening away from 9.30pm to 1am before going to bed.
Wednesday 25th July 2007
I am awake at 5.45am and reading. “Bury My Heart at Wounded Knee” is compelling
reading but immensely sad. I am 73 kgs today. I am seen by John Duncan. The GCSF and Tazocin anti-biotic are to continue. I will have to stay until my neutrophils show significant signs of improvement and there is no clear indication how long that might take. If I escape by the weekend, it may be a bonus. Doh! I mention some scratch marks on my hip which I must have done one night earlier on in this time in hospital. I am to have it dressed to avoid possible infection. There is no newspaper trolley service up here - which seems a great pity - so I walk down to the shop right at the front of the hospital. The walk back is a slog at it is all up stairs and steps. However, I need to get some strength back into my legs, so I guess it is good for me. I buy a small Lucozade - original flavour - as my mouth is tasting grotty. It doesn’t work for me. Tina arrives at 4pm and - “surprise, surprise” - she has got her camera back courtesy of Inspector Vanholme of the Ghent Police. Isn’t that brilliant! After waiting all day, at last my blood transfusion starts at 4.30pm. I receive three units by 12.30am and we stop for the night. My blood results today are: Wbc: 0.5; Neut: 0.0; Hbn: 8.6; and PLT: 63.
Tuesday 24th July 2007
We have a bright morning. My weight is 74 kgs still. I am seen by Panos. They want to keep me in until Thursday at least to see my CRP and CMV go down, especially with such a low white cell count. They will also be moving me to the Haematology Ward as they have a bed free at last. Tina arrives at 4.30pm and at the same time we learn that I have a “zero” CMV result - yippee! So stop the Valganciclovir and resume Aciclovir. At 6pm I am trundled up to Haematology on the 9th floor of the Millennium Wing - a floor above the Day Unit. I am now in the lap of luxury. I have my own room, complete with toilet and shower, plenty of space, air conditioning and a window facing north so the room temperature is good. This one of only six beds on the Haematology Ward, hence the pressure on beds previously. I get my blood results from a very helpful Staff Nurse Jason; they are: Wbc: 0.4; Neut: 0.0; Hbn: 8.2; PLT: 52; and CRP: 36. At last I am able to get my blood results in full on a daily basis without feeling I am stealing the crown jewels. It is my blood after all! I am being lined up for four units of blood tomorrow. I read and doze to 1am and then sleep well.
Monday 23rd July 2007
I sleep quite well despite my neighbour and am awake at 6.15am. I go and get my Itroconazole and am given my early dose of Tazocin. I am now comfortable walking without a zimmer. I get a new cannula inserted on my right elbow and have a visit from the ward pharmacist to run through my medications as there has been some slight confusion with the ward staff. I find this quite reassuring as I am on a ward where the staff are unfamiliar with my medical condition etc. My weight today is 74 kgs. I am seen by Ros Johnston and the team. I do not get the full details - again - but my Wbc is 0.7, I have no Europhiles, my CRP is 75 and they have received a CMV reading of 153 - down significantly from the initial 6955! The likelihood is continue with the Tazocin for two more days and then we can resume the Campath to finish the programme. I have a visit from Anna and Eva at 1.30pm - just back from Salzburg. The Staff Nurse advises not a good idea having Eva here as there is diarrhoea on the ward. Now they tell me! I ring the Clinical Trials team at Kings to warn them that I will not be finished my Campath in time for the final staging tests scheduled for a week’s time. Tina comes in at 4.30pm. It is raining! At least that keeps the temperature down in the room - and gives the seagulls outside a bit of a soaking. They queue up by the window to be fed by my neighbour’s visitors!
Sunday 22nd July 2007
I am awake at 2am after a distressing dream about Tina - more Methylpred side effects I guess - and very upsetting. I manage to get back to sleep and go through to 6am but have a sweaty episode in the middle of it. The staff nurses on the ward have taken the easy route with my medications and have left it all to me. This partly because some of the items written up on my admission record by the doctor yesterday are incorrect and it has confused them. The pain and movement in my legs seem to be getting a bit better already and the fluid content also appears to have reduced. My weight is still 75 kgs today. Tina and Matthew arrive about the same time - 11.45am, but at the same time as the porter comes to take me for my x-ray, so they go for a coffee. The x-ray takes longer than expected and it is time for lunch when I get back, so I don’t have much time with them.
Shortly after that I see Paul Hill. My Wbc is 0.5, my neutrophils are none existent, my Hbn: 8.8 and my CRP is 139. He tells me that I need a blood transfusion tomorrow. My temperature is still a little high in the morning - 37.3 - but drops to 36 when checked later. At 4.30pm I am moved from the large ward to a side ward containing three beds. It is like a greenhouse as it faces south and west and the sun has been out all day! But hey - at least I am out of the madhouse, although you wouldn’t know it with the fellow in the bed next to me! He is coughing and spluttering day and night and calling out “Nurse” all the time as well! Before Tina goes I have the bright idea that I should get a £3.50 card to watch the Grand Prix -and maybe something else - on the Patient Line TV. What a rip off and what a waste if time and effort. I get no response from the TV and it takes half an hour to find out that the TV cannot read the card have inserted. By the time someone comes to fix it, the race is almost over! I get my money back instead and revert to reading. I finish “Small Island“ and start “Bury My Heart and Wounded Knee” by Dee Brown.
Saturday 21st July 2007
Here I am in Catherine James ward for an indeterminate length of time. It is a ward for men with respiratory problems. I am in a room of seven beds with five men clearly over 80 years and most looking rather poorly. The other patient has the most severe problems and seems to only know one word - “nurse“ - day and night! The strength in my legs has gone so much that I have to use a zimmer frame to get to the toilet out in the corridor. I even have to resort to a commode on one occasion! My lack of dignity knows no bounds!
Having had my first dose of Tazocin at 6pm Friday the ward doesn’t get its act together for my second dose until 1045am Saturday - and I was supposed to have it every six hours. Paul Hill is the weekend consultant and I manage to elicit from him my blood results from him, as none of the ward nurses are allowed access to such information from the hospital computer system. Would you believe that? Anyway they are: Wbc: 0.8; Neut: 0.3; Hbn: 9.2; PLT: 52; and CRP 229. So I am rather seriously neutropenic. My weight today is 75 kgs. Tina finds the ward more depressing than I do, but it is really rather crummy. I quickly find I am getting fed with being called “Dear” and “My darling” by nurses and phlebotomists and I bite back, both politely and somewhat more vigorously. In my personal experience, women have been patronised by men, especially policeMEN, for generations. Having now rid themselves of much of that stereotyping through 30+ years of equality policies etc., I find it amazing that it should be perpetuated in the opposite direction, through lack of thought I am sure. Consider that the rules on one ward I have been in this year state very clearly that each patient is an individual and should be respected as such. STOP! Get off the soapbox - lecture over!
More Agonies of “Withdrawal” from the Methylpredisolone
Week of 16th to Friday 20th July 2007
This week saw the effects of the Methylpredisolone gradually return in similar fashion to last month. Pains started in my left leg from Monday night and then took in my right leg. It progressively worsened until Friday morning when both legs from thigh to ankle were aching and I could hardly get out of bed. Taking Ibroprofen made no difference and what effect the predisolone had I cannot tell. If it reduced the pain at all, then I am glad I had it, because any more pain would have been horrendous! Surprisingly I managed to get a reasonable night’s sleep most nights. I was reading for an hour or so from 11pm, rather than waking up and reading at 3am. That had stopped by the previous Sunday night. On one or two nights I had rather weird dreams with violent undertones. They were also very vivid once I had woken up. I seem to recall this phenomenon occurred previously and assume it is a side effect of the Methylprednisolone - most unpleasant. Each morning was a long, slow start, often not breakfasted, showered and dressed until 11am. I was doing everything in slow motion! - particularly getting upstairs. Strangely, I did not feel compelled to have a sleep every afternoon, although I tried to have time with my legs up as they were filling up with fluid as expected. I had the same lunch each day - soup, Ryvita with pastrami and lettuce - and enjoyed it, whereas breakfast was still a struggle. I also enjoyed my dinners this week more than last and found a pre-dinner drink better also - especially the Belgian Carmelite beers! Wine tasted odd, even the white.
I had blood tests at the RSCH Monday and Thursday and got down a bit late both times as it was hard going to get myself moving. My weight was 77.6 and 77 kgs. My blood results were: Wbc: 3.6 and 1.9; Neut: 3.4 and 1.1; Lymph:0.1 and 0.5; Hbn: 11.1 and 9.9;
and PLT: 117 and 66. So I am injecting GCSF every other day, following the days I have the Campath.
My mobility is so bad by Friday morning I decide to stay in bed. I cannot get my legs into the bath to have a shower! They are also full of fluid. Tina brings me my breakfast to the bedroom and she doesn’t go to work as it looks as if I may end up being admitted to hospital yet again. I keep a watch on my temperature, which varies from 37.0 to 37.9 and I call Laura in the Day Unit a couple of times for advice. By 3pm my temperature is back to 37.9 and I tell Laura that I am coming in. I get down to the Day Unit at 4.20pm. I have a blood test, am seen by a locum doctor who was with the team when I was seen yesterday and am admitted. I have a bolus injection of Tazocin at 6pm and am wheeled down to Catherine James ward by 6.40pm. My GCSF injections are changed to daily and my Campath is suspended. I get scant information on my blood result for today except that my CRP reading is 223.
This week saw the effects of the Methylpredisolone gradually return in similar fashion to last month. Pains started in my left leg from Monday night and then took in my right leg. It progressively worsened until Friday morning when both legs from thigh to ankle were aching and I could hardly get out of bed. Taking Ibroprofen made no difference and what effect the predisolone had I cannot tell. If it reduced the pain at all, then I am glad I had it, because any more pain would have been horrendous! Surprisingly I managed to get a reasonable night’s sleep most nights. I was reading for an hour or so from 11pm, rather than waking up and reading at 3am. That had stopped by the previous Sunday night. On one or two nights I had rather weird dreams with violent undertones. They were also very vivid once I had woken up. I seem to recall this phenomenon occurred previously and assume it is a side effect of the Methylprednisolone - most unpleasant. Each morning was a long, slow start, often not breakfasted, showered and dressed until 11am. I was doing everything in slow motion! - particularly getting upstairs. Strangely, I did not feel compelled to have a sleep every afternoon, although I tried to have time with my legs up as they were filling up with fluid as expected. I had the same lunch each day - soup, Ryvita with pastrami and lettuce - and enjoyed it, whereas breakfast was still a struggle. I also enjoyed my dinners this week more than last and found a pre-dinner drink better also - especially the Belgian Carmelite beers! Wine tasted odd, even the white.
I had blood tests at the RSCH Monday and Thursday and got down a bit late both times as it was hard going to get myself moving. My weight was 77.6 and 77 kgs. My blood results were: Wbc: 3.6 and 1.9; Neut: 3.4 and 1.1; Lymph:0.1 and 0.5; Hbn: 11.1 and 9.9;
and PLT: 117 and 66. So I am injecting GCSF every other day, following the days I have the Campath.
My mobility is so bad by Friday morning I decide to stay in bed. I cannot get my legs into the bath to have a shower! They are also full of fluid. Tina brings me my breakfast to the bedroom and she doesn’t go to work as it looks as if I may end up being admitted to hospital yet again. I keep a watch on my temperature, which varies from 37.0 to 37.9 and I call Laura in the Day Unit a couple of times for advice. By 3pm my temperature is back to 37.9 and I tell Laura that I am coming in. I get down to the Day Unit at 4.20pm. I have a blood test, am seen by a locum doctor who was with the team when I was seen yesterday and am admitted. I have a bolus injection of Tazocin at 6pm and am wheeled down to Catherine James ward by 6.40pm. My GCSF injections are changed to daily and my Campath is suspended. I get scant information on my blood result for today except that my CRP reading is 223.
The Last Session of Methylprednisolone - Hurray.
Week of 9th to 15th July 2007
Thanks to Jim - twice- and Terry and Les, I have help with transport for three sessions and Tina takes me on Wednesday and Friday. I feel woozy, weary and progressively heavy legged as the week goes on and sleep at least two hours every afternoon. I struggle eating my breakfasts, but enjoy my lunches, which are soup, followed mostly by Ryvita with ham or pastrami and salad, despite my sore gums and mouth ulcers! I try a hot chocolate with a Jaffa cake on Monday afternoon after my sleep, but by 7pm I am feeling decidedly queezy and am sick. That is actually the very first time I have been sick since I started my treatment, despite several times being close. So no hot chocolate for a while! As a result of that experience, I start taking Metoclopromide before each meal and it seems to work. I don’t really enjoy my dinners this week and keep to fairly small portions, although Tina tries to get more into me! The goats cheese and tomato pie is tasty and works well, but my appetite is not great.
My weight varies between 73 and 76.2 kgs through the week with no logic from day to day. I am using the weighing platform each time, so find it really odd that there should be such differences day to day. For example on Wednesday I am 73 kgs but on Thursday I am 75.4 - an increase of 2.4 kgs. My blood results on Monday and Thursday are:
Wbc: 4.2 and 7.6; Neut: 3.5 and 7.2; Lymph: 0.5 and 0.6; Hbn: 10.7 and 10.3; and
PLT: 133 and 168. By Friday I am feeling generally pretty lousy and sorry for myself, with my legs also starting to fill out with fluid. I then get a call from Tim Corbett with news that Kings have identified another CMV reactivation. Fortunately, the reading is 6955, not up in the skies like last time. The decided treatment is 900 mgs twice daily of the anti-viral tablet Valganciclovir for the next 21 days and drop the Aciclovir I am taking No admission into hospital is needed unless the CMV readings rise.
The Methylprednisolone effect is soon upon me as far as sleep pattern is concerned. I am awake at 3am Saturday morning and thirsty, bearing in mind I am only happy drinking very cold water at the moment. I am awake again at 4am and read until 7am (so I am getting back into “Small Island” by Andrea Levy). I then sleep on to 9.30am while Tina went into work. I just about manage a late breakfast and then spend the rest of the morning in the lounge with my legs up, catching up on some old TV recordings, resting and feeling tired and lousy. I recover enough by 2pm to have my usual lunch and then have a good two hours sleep until Tina comes home from work. I don’t feel like dinner until quite late. We are sitting down at 9.30pm. It ok for me but far too late for Tina, bearing in mind she has been at work all day. I cannot help it though. It is the Methylpred. and my body clock!
That night I am awake and reading again between 3am and 5am, but then sleep on until 9.45am. We have a morning visit from Lynn Ross and by 1.30pm I am upstairs asleep. Then it is a 3pm lunch, more resting and sleep for me in the afternoon and 8.30pm dinner.
As expected the Spanish pork casserole works a treat! However, I find no great taste in the little French beer or the fresh cherries, although Tina says they are really nice.
I start the course of prednisolone tablets on Saturday with 70 mgs (14 tablets). Each day the dosage reduces by 10 mgs until I reach two days of 10 mgs and 5 mgs respectively, making a total of nine days.
Thanks to Jim - twice- and Terry and Les, I have help with transport for three sessions and Tina takes me on Wednesday and Friday. I feel woozy, weary and progressively heavy legged as the week goes on and sleep at least two hours every afternoon. I struggle eating my breakfasts, but enjoy my lunches, which are soup, followed mostly by Ryvita with ham or pastrami and salad, despite my sore gums and mouth ulcers! I try a hot chocolate with a Jaffa cake on Monday afternoon after my sleep, but by 7pm I am feeling decidedly queezy and am sick. That is actually the very first time I have been sick since I started my treatment, despite several times being close. So no hot chocolate for a while! As a result of that experience, I start taking Metoclopromide before each meal and it seems to work. I don’t really enjoy my dinners this week and keep to fairly small portions, although Tina tries to get more into me! The goats cheese and tomato pie is tasty and works well, but my appetite is not great.
My weight varies between 73 and 76.2 kgs through the week with no logic from day to day. I am using the weighing platform each time, so find it really odd that there should be such differences day to day. For example on Wednesday I am 73 kgs but on Thursday I am 75.4 - an increase of 2.4 kgs. My blood results on Monday and Thursday are:
Wbc: 4.2 and 7.6; Neut: 3.5 and 7.2; Lymph: 0.5 and 0.6; Hbn: 10.7 and 10.3; and
PLT: 133 and 168. By Friday I am feeling generally pretty lousy and sorry for myself, with my legs also starting to fill out with fluid. I then get a call from Tim Corbett with news that Kings have identified another CMV reactivation. Fortunately, the reading is 6955, not up in the skies like last time. The decided treatment is 900 mgs twice daily of the anti-viral tablet Valganciclovir for the next 21 days and drop the Aciclovir I am taking No admission into hospital is needed unless the CMV readings rise.
The Methylprednisolone effect is soon upon me as far as sleep pattern is concerned. I am awake at 3am Saturday morning and thirsty, bearing in mind I am only happy drinking very cold water at the moment. I am awake again at 4am and read until 7am (so I am getting back into “Small Island” by Andrea Levy). I then sleep on to 9.30am while Tina went into work. I just about manage a late breakfast and then spend the rest of the morning in the lounge with my legs up, catching up on some old TV recordings, resting and feeling tired and lousy. I recover enough by 2pm to have my usual lunch and then have a good two hours sleep until Tina comes home from work. I don’t feel like dinner until quite late. We are sitting down at 9.30pm. It ok for me but far too late for Tina, bearing in mind she has been at work all day. I cannot help it though. It is the Methylpred. and my body clock!
That night I am awake and reading again between 3am and 5am, but then sleep on until 9.45am. We have a morning visit from Lynn Ross and by 1.30pm I am upstairs asleep. Then it is a 3pm lunch, more resting and sleep for me in the afternoon and 8.30pm dinner.
As expected the Spanish pork casserole works a treat! However, I find no great taste in the little French beer or the fresh cherries, although Tina says they are really nice.
I start the course of prednisolone tablets on Saturday with 70 mgs (14 tablets). Each day the dosage reduces by 10 mgs until I reach two days of 10 mgs and 5 mgs respectively, making a total of nine days.
“Make the Best of the Weekend - the Methylpred is Next Week”
Friday 6th to Sunday 8th July 2007
I go down for my blood test on Friday to find that I have lost over 2 kgs despite all the food consumed in the week - I am 73.2 kgs. My results are: Wbc: 8.2; Neut: 7.5; Lymph: 0.5;
Hbn: 10.8; and PLT: 129. I see Tm Corbett about my mouth ulcers and a rather painful swelling on the back of my hand where I had had a cannula some weeks earlier. He prescribes me a short course of anti-biotics to prevent any possible infection, some anaesthetic mouthwash (Difflam) and increasing the Aciclovir from 3 tablets to five times daily. The lump on the hand is probably a small thrombosis and he says it will go away naturally in time. I have two hours sleep in the afternoon, during which Vikki Bevan leaves a message on the answer phone that my Methylprednisolone next week will have to be the usual dosage - to comply with the clinical trial protocol - but that I will have a nine day course of prednisolone tablets starting on the Saturday following to help wean me off the high dosage steroids and hopefully reduce the possibility of the muscle wastages withdrawal symptoms I experienced last time. Hope it works!
The “birthday” balloon ride I had arranged for Tina for Saturday evening unfortunately was cancelled at the last moment. It was a very nice, clear evening and we would have had superb views, but the wind was too strong. So we have to arrange it for another day. We go to Worthing on Sunday morning and drop in at the end of Lily’s 4th birthday party - mayhem! - and then back to Matthew’s to see how the kitchen / dining room re-construction is going. They have been in chaos for weeks.
I go down for my blood test on Friday to find that I have lost over 2 kgs despite all the food consumed in the week - I am 73.2 kgs. My results are: Wbc: 8.2; Neut: 7.5; Lymph: 0.5;
Hbn: 10.8; and PLT: 129. I see Tm Corbett about my mouth ulcers and a rather painful swelling on the back of my hand where I had had a cannula some weeks earlier. He prescribes me a short course of anti-biotics to prevent any possible infection, some anaesthetic mouthwash (Difflam) and increasing the Aciclovir from 3 tablets to five times daily. The lump on the hand is probably a small thrombosis and he says it will go away naturally in time. I have two hours sleep in the afternoon, during which Vikki Bevan leaves a message on the answer phone that my Methylprednisolone next week will have to be the usual dosage - to comply with the clinical trial protocol - but that I will have a nine day course of prednisolone tablets starting on the Saturday following to help wean me off the high dosage steroids and hopefully reduce the possibility of the muscle wastages withdrawal symptoms I experienced last time. Hope it works!
The “birthday” balloon ride I had arranged for Tina for Saturday evening unfortunately was cancelled at the last moment. It was a very nice, clear evening and we would have had superb views, but the wind was too strong. So we have to arrange it for another day. We go to Worthing on Sunday morning and drop in at the end of Lily’s 4th birthday party - mayhem! - and then back to Matthew’s to see how the kitchen / dining room re-construction is going. They have been in chaos for weeks.
Saturday 8 September 2007
A Break in Ghent
Sunday 1st to Thursday 5th July 2007
At fairly short notice we managed to book ourselves a Ghent city centre B & B for four nights to celebrate Tina’s 60th. There is no point trying to look long term with anything because of the vagaries of my condition and my responses to treatment, but I wanted to make sure Tina’s special day did not pass by unnoticed. Ghent is like Bruges without the “chocolate box” prettiness or image, but it is full of wonderful old Flemish style buildings. It has an industrial past and a much more lived-in feel.
We have a superb B & B on one of the ancient streets with the Stadhuis at one end. We are walking distance from everything, but the rain contrives to limit our wanderings somewhat. It is torrential at times, forcing us to spend a lot of time in bars and restaurants! We have some excellent meals in extremely trendy restaurants and sample the wonderful Belgian beers. I find the days a bit tiring, so we found ourselves back in our room late afternoon for me to have a couple of hours lie down. Also I find that I have started getting mouth ulcers, which detracts from my enjoyment of the lovely food. After four and a half years, I guess the effectiveness of my prophelactic medication is wearing a bit thin. Of course I didn’t bring any Adcortyl or similar, so I have to grin and bear it.
Unfortunately, Tina loses her camera on our second night out and it also transpires that my camera has a fault. So we end up with only a few photographs to remind ourselves of the trip. The good news is that after reporting the loss to the Ghent police, two weeks later it arrives in the post! The honest Belgians show us the way!!
Of course I have to keep the Campath injections going, but without a blood test until Friday, I have no idea whether my bloods are up or down, so I also inject with GCSF to be on the safe side. We are back home Thursday via a big shopping session in Calais and a ferry bursting with noisy school kids.
At fairly short notice we managed to book ourselves a Ghent city centre B & B for four nights to celebrate Tina’s 60th. There is no point trying to look long term with anything because of the vagaries of my condition and my responses to treatment, but I wanted to make sure Tina’s special day did not pass by unnoticed. Ghent is like Bruges without the “chocolate box” prettiness or image, but it is full of wonderful old Flemish style buildings. It has an industrial past and a much more lived-in feel.
We have a superb B & B on one of the ancient streets with the Stadhuis at one end. We are walking distance from everything, but the rain contrives to limit our wanderings somewhat. It is torrential at times, forcing us to spend a lot of time in bars and restaurants! We have some excellent meals in extremely trendy restaurants and sample the wonderful Belgian beers. I find the days a bit tiring, so we found ourselves back in our room late afternoon for me to have a couple of hours lie down. Also I find that I have started getting mouth ulcers, which detracts from my enjoyment of the lovely food. After four and a half years, I guess the effectiveness of my prophelactic medication is wearing a bit thin. Of course I didn’t bring any Adcortyl or similar, so I have to grin and bear it.
Unfortunately, Tina loses her camera on our second night out and it also transpires that my camera has a fault. So we end up with only a few photographs to remind ourselves of the trip. The good news is that after reporting the loss to the Ghent police, two weeks later it arrives in the post! The honest Belgians show us the way!!
Of course I have to keep the Campath injections going, but without a blood test until Friday, I have no idea whether my bloods are up or down, so I also inject with GCSF to be on the safe side. We are back home Thursday via a big shopping session in Calais and a ferry bursting with noisy school kids.
A Quiet Week
Week of 25th to 30th June 2007
I spend this week just ticking over and resting afternoons. Went down to the Day Unit at the RSCH for blood tests both Tuesday and Friday mornings. No problems for me driving this week, so on those days I am up quite early to get Tina to work en route to Brighton. My blood results are ok - Wbc: 2.7 and 5.3; Neut: 2.4 and 4.7; Lymph: 0.3 and 0.5; Hbn: 10.6 and 10.8; and PLT: 159 and 108. My weight moved from 74.2 kgs to 75.6 - I don’t know why, other than I may still have fluid in my legs. I have visits from Tony Collins and Bill Swallow and Anna, Nick and Eva come down on Tuesday from Mull ahead of driving to Salzburg at the weekend on one of their assignments.
I spend this week just ticking over and resting afternoons. Went down to the Day Unit at the RSCH for blood tests both Tuesday and Friday mornings. No problems for me driving this week, so on those days I am up quite early to get Tina to work en route to Brighton. My blood results are ok - Wbc: 2.7 and 5.3; Neut: 2.4 and 4.7; Lymph: 0.3 and 0.5; Hbn: 10.6 and 10.8; and PLT: 159 and 108. My weight moved from 74.2 kgs to 75.6 - I don’t know why, other than I may still have fluid in my legs. I have visits from Tony Collins and Bill Swallow and Anna, Nick and Eva come down on Tuesday from Mull ahead of driving to Salzburg at the weekend on one of their assignments.
Mid Treatment Programme Tests and Consultation
Friday 22nd June 2007
Back to KCH for my consultation with Dr Steve Devereux, having done my Campath injection before leaving for London. Whilst waiting we catch up with Danny and Donna - which is nice - and exchange email addresses. Danny gives me permission to mention his name in my blog. Steve Devereux shows his delight in my CT scan results. Apparently, the team’s response was something like, “Wow, look at that. There’s nothing there!” This is great news. My blood results today are also good - Wbc: 10.4; Hbn: 11.4; PLT: 207; Neut: 9.4; Lymph: 0.87. It is probably too soon after my injection for any Campath effect to reflect in the results. There is no change of news on the donor front - they have one preferred “C Mismatch” donor. But there is still time and the searches will continue in case they are able to find a closer match. I forget to ask if my next Methylprednisilone dosage will be reduced - as Paul Hill had mooted. I hope to find out later. I will continue to take my Campath every week for the next five weeks, including the week we have planned away in Ghent for Tina’s birthday. However, the week for the Methylpred will slide back to the week of 9th July. The whole programme will end on Friday 27th July, provided we have no interruptions for infections, myopathy or whatever. Meanwhile I have “end-of-programme” tests arranged for Monday 30th July and a next appointment with Steve Devereux on Friday 17th August. So everything looks fine for a transplant about mid September. That evening, despite glowering clouds, we join Stephen, Sue and friends in an open air operatic evening of Carmen at Middleton Manor. We are well prepared for a cool and wet evening and are not disappointed, with a steady down pouring for the last 15 minutes!
Week of 18th to 24th June 2007
Well it seemed a good idea to stay over Sunday night and go early on Monday morning direct from Leicestershire down to London for my day of tests, etc. at Kings, but in the event it was horrendous! We thought we had left in good time - just after 7am - but what with heavy traffic and accidents on the A14 and M11, we eventually arrive at KCH at 11.45am - well over an hour late. At least the A12 route through to the Blackwall Tunnel is easy! My tests today are blood counts, bone marrow, an ECG and a CT scan. Today does not run smoothly. The usual routine is to get my blood sample done first. I wait about 40 minutes without being called - which has never happened before - only to find that one of the receptionists had put my “Urgent” blood sample request in the wrong place! Doh!! My bone marrow sample is taken by Dr Waseem - it never gets any better! I then find that the CT scan is not scheduled for today at all, but for ten days time. By a combination of charm and insistence we manage to persuade the lady in charge of the CT team to fit me in today. Fortunately the ECG is done immediately and we leave after a late sandwich lunch. I inject my Campath when I get home from London and I get my blood results on Tuesday; they show that I am neutropenic and I guess I probably have been all over the weekend as well(!) - Wbc: 1.35; Hbn: 11.5; PLT: 209; Neut: 0.81; and Lymph: 0.5. - so GCSF straight away! I arrange for an additional blood test at the RSCH on Wednesday morning to make sure I on the right track with taking my Campath and GCSF. My counts have bounced back again - Wbc: 6.1; Hbn: 10.5; PLT: 147; Neut: 5.5; Lymph: 0.4. We have a nice evening at Cath and Jim’s for dinner of a splendid Spanish pork casserole - my current favourite! - but had put them on notice on Tuesday that I may turn up neutropenic! Fortunately that is not how it turns out. I pass on the GCSF injection on Thursday on the strength of my blood results, but have one on Saturday as a precaution. I have an easy Saturday and sleep for a couple of hours in the afternoon, before we go out to Norma Elder’s surprise 80th birthday celebrations - really nice. On Sunday we leave Mass at 11.15am and make haste to Cranbrook to meet up with Tony and Pam for Sunday lunch at the George Hotel. Great to meet up with them again and enjoy a good meal. I am dozy as Tina drives home and I have over two hours sleep when we get home - from about 6.45pm. I still have a good night’s sleep on top of that !
Back to KCH for my consultation with Dr Steve Devereux, having done my Campath injection before leaving for London. Whilst waiting we catch up with Danny and Donna - which is nice - and exchange email addresses. Danny gives me permission to mention his name in my blog. Steve Devereux shows his delight in my CT scan results. Apparently, the team’s response was something like, “Wow, look at that. There’s nothing there!” This is great news. My blood results today are also good - Wbc: 10.4; Hbn: 11.4; PLT: 207; Neut: 9.4; Lymph: 0.87. It is probably too soon after my injection for any Campath effect to reflect in the results. There is no change of news on the donor front - they have one preferred “C Mismatch” donor. But there is still time and the searches will continue in case they are able to find a closer match. I forget to ask if my next Methylprednisilone dosage will be reduced - as Paul Hill had mooted. I hope to find out later. I will continue to take my Campath every week for the next five weeks, including the week we have planned away in Ghent for Tina’s birthday. However, the week for the Methylpred will slide back to the week of 9th July. The whole programme will end on Friday 27th July, provided we have no interruptions for infections, myopathy or whatever. Meanwhile I have “end-of-programme” tests arranged for Monday 30th July and a next appointment with Steve Devereux on Friday 17th August. So everything looks fine for a transplant about mid September. That evening, despite glowering clouds, we join Stephen, Sue and friends in an open air operatic evening of Carmen at Middleton Manor. We are well prepared for a cool and wet evening and are not disappointed, with a steady down pouring for the last 15 minutes!
Week of 18th to 24th June 2007
Well it seemed a good idea to stay over Sunday night and go early on Monday morning direct from Leicestershire down to London for my day of tests, etc. at Kings, but in the event it was horrendous! We thought we had left in good time - just after 7am - but what with heavy traffic and accidents on the A14 and M11, we eventually arrive at KCH at 11.45am - well over an hour late. At least the A12 route through to the Blackwall Tunnel is easy! My tests today are blood counts, bone marrow, an ECG and a CT scan. Today does not run smoothly. The usual routine is to get my blood sample done first. I wait about 40 minutes without being called - which has never happened before - only to find that one of the receptionists had put my “Urgent” blood sample request in the wrong place! Doh!! My bone marrow sample is taken by Dr Waseem - it never gets any better! I then find that the CT scan is not scheduled for today at all, but for ten days time. By a combination of charm and insistence we manage to persuade the lady in charge of the CT team to fit me in today. Fortunately the ECG is done immediately and we leave after a late sandwich lunch. I inject my Campath when I get home from London and I get my blood results on Tuesday; they show that I am neutropenic and I guess I probably have been all over the weekend as well(!) - Wbc: 1.35; Hbn: 11.5; PLT: 209; Neut: 0.81; and Lymph: 0.5. - so GCSF straight away! I arrange for an additional blood test at the RSCH on Wednesday morning to make sure I on the right track with taking my Campath and GCSF. My counts have bounced back again - Wbc: 6.1; Hbn: 10.5; PLT: 147; Neut: 5.5; Lymph: 0.4. We have a nice evening at Cath and Jim’s for dinner of a splendid Spanish pork casserole - my current favourite! - but had put them on notice on Tuesday that I may turn up neutropenic! Fortunately that is not how it turns out. I pass on the GCSF injection on Thursday on the strength of my blood results, but have one on Saturday as a precaution. I have an easy Saturday and sleep for a couple of hours in the afternoon, before we go out to Norma Elder’s surprise 80th birthday celebrations - really nice. On Sunday we leave Mass at 11.15am and make haste to Cranbrook to meet up with Tony and Pam for Sunday lunch at the George Hotel. Great to meet up with them again and enjoy a good meal. I am dozy as Tina drives home and I have over two hours sleep when we get home - from about 6.45pm. I still have a good night’s sleep on top of that !
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