I have started feeling nauseous on a regular basis; in the last few days I vomited twice. We discussed it at the clinic on Tuesday, and there are several possible causes, most likely is still the Glivec. I have restarted a full regime of anti-sickness medication, to see if this gets it under control. If not (by next week), then we will try stopping the Glivec. She assured me that the nausea is both not uncommon, and temporary.
My kidneys are losing the battle against the ciclosporin (the immune suppressant drug); my creatinine level is slowly creeping up. Accordingly, the doctor has reduced my intake of ciclosporin from 75mg twice a day to 50mg twice a day. It was in the plan to make this reduction soon, so bringing it in a bit earlier should be OK. Reducing the level of immune suppressant means that I may develop graft-versus-host-disease (GVHD), which will be a skin rash or diarrhoea, so I am slghly nervous. On the other hand, I am keen to get off the ciclosporin as soon as possible.
On Sunday Rose and I played the par 3 course, and I played all 9 holes from the tee, walking all the way. I didn't do too badly. On Monday we played the main course, with me in a buggy, hitting an approach from the hundred yard markers on the fairways. I got tired at the 13th, and managed only two more holes after that. My aim is to be able to play the course from the tees, but for the foreseeable future I will need a buggy; my haemoglobin is still only 9.5. The doctor says it will take many months to recover, and will likely never get back to the level it was, but should be enough to lead a normal life, and to exercise normally.
Wednesday 31 August 2011
Thursday 25 August 2011
T+63: Chinese Buffet
Yesterday my old friend Ray came to visit, and we had lunch at the local Chinese, which is a very reasonably priced and varied buffet. We arrived at about 12 and stayed till 3:30, eating and doing quizes! Ray won most rounds (I only won one), but the questions are difficult; we used Bamber Gascoigne's quiz book that Ray bought me earlier in the year. It was my first trip to a restaurant since the transplant, but it is quite a large room, and we sat well away from anyone else so I hope I did not pick up an infection.
On Tuesday Rose and I went to the driving range and I took a few full swings of my 9 iron and pitching wedge. I am pleased to say I can still hit the ball quite nicely - I hit about 30 balls. Next time we go to the par 3 I will play from the tees!
I continue to feel quite well, except for a couple of hours in the morning when I feel nauseous after taking the Glivec. The novelty of the Wii has not worn off, although I still cannot do many of the exercises as they involve standing on one leg, and I am too weak to do that. Still, I do what I can and it is certainly having a beneficial effect. My haemoglobin level is stubbornly staying at around 9.5; although this is fine for getting round the house, I really want it to increase as it will enable me to do more. I am still drinking 3 litres of fluid a day; I suspect I will have to continue until they start decreasing the ciclosporin (immune suppressant).
On Tuesday Rose and I went to the driving range and I took a few full swings of my 9 iron and pitching wedge. I am pleased to say I can still hit the ball quite nicely - I hit about 30 balls. Next time we go to the par 3 I will play from the tees!
I continue to feel quite well, except for a couple of hours in the morning when I feel nauseous after taking the Glivec. The novelty of the Wii has not worn off, although I still cannot do many of the exercises as they involve standing on one leg, and I am too weak to do that. Still, I do what I can and it is certainly having a beneficial effect. My haemoglobin level is stubbornly staying at around 9.5; although this is fine for getting round the house, I really want it to increase as it will enable me to do more. I am still drinking 3 litres of fluid a day; I suspect I will have to continue until they start decreasing the ciclosporin (immune suppressant).
Wednesday 17 August 2011
T+55: First steps to fitness
The Nintendo Wii arrived at the weekend, and I set it up on Saturday. Since then, Rose and I have been learning the exercises and playing the odd game. We have Wii Sports/Sports Resort and Wii Fit+ ...
... so I am now feeling the effects of trying some of the muscle and yoga exercises - my arms, legs and abdominal muscles ache! And I only did a handful of the exercises once; it really emphasizes to me how out of shape I am after 6 months of chemo and a bone marrow transplant.
Yesterday I (re)started taking Glivec. I am not sure why, but my consultant said it might do some good. I need to ask more (and I will next clinic), but anyway after taking my morning meds yesterday I promptly vomited. It became clear that the Glivec was to blame, so today I took some anti-emetic drugs 30 mins beforehand, and took the Glivec with my breakfast, and it did the trick. They have advised me it may take a couple of weeks to get used to the Glivec. Before the transplant, I was taking it every day, so I am surprised it had such a bad effect on me.
At the weekend we went to visit Kim and Marilyn and see their new kitchen (very nice); Paul and Raksha also came and we had tea and cakes. This was good for me as I had three cups of tea! thereby keeping my fluid intake high as I still need to drink 3 litres a day.
Today we had lunch at the garden centre! This is because Rose had a two-for-one offer, and gets free coffee every month, so it was a cheap meal!
That's about it. I am sleeping pretty well now, and hope that the Wii will help build back some muscle tone. I am a bit paranoid about being near other people, and try to stay outside as much as possible. Fortunately, although the summer here is not great, it has still been warm enough to sit in the garden when visiting or when visitors come here. I would love to get through this without picking up a viral infection from someone.
... so I am now feeling the effects of trying some of the muscle and yoga exercises - my arms, legs and abdominal muscles ache! And I only did a handful of the exercises once; it really emphasizes to me how out of shape I am after 6 months of chemo and a bone marrow transplant.
Yesterday I (re)started taking Glivec. I am not sure why, but my consultant said it might do some good. I need to ask more (and I will next clinic), but anyway after taking my morning meds yesterday I promptly vomited. It became clear that the Glivec was to blame, so today I took some anti-emetic drugs 30 mins beforehand, and took the Glivec with my breakfast, and it did the trick. They have advised me it may take a couple of weeks to get used to the Glivec. Before the transplant, I was taking it every day, so I am surprised it had such a bad effect on me.
At the weekend we went to visit Kim and Marilyn and see their new kitchen (very nice); Paul and Raksha also came and we had tea and cakes. This was good for me as I had three cups of tea! thereby keeping my fluid intake high as I still need to drink 3 litres a day.
Today we had lunch at the garden centre! This is because Rose had a two-for-one offer, and gets free coffee every month, so it was a cheap meal!
That's about it. I am sleeping pretty well now, and hope that the Wii will help build back some muscle tone. I am a bit paranoid about being near other people, and try to stay outside as much as possible. Fortunately, although the summer here is not great, it has still been warm enough to sit in the garden when visiting or when visitors come here. I would love to get through this without picking up a viral infection from someone.
Friday 12 August 2011
T+50: Halfway
I called this post "Halfway" because the doctors say the first hundred days post transplant are the most important/worst, so at 50 days I am half way.
My health continues to be OK, although I am still a bit weak. I have been reading the blogs of some other leukaemia sufferers and I think that so far I have been lucky, at least with the transplant - having a sibling donor and both of us being CMV negative are both big advantages. I have ordered a Nintendo Wii with "Wii Fit" to try and do some regular exercise at home, and recover some of my muscle tone; I will let you know how I get on with it.
On Wednesday, Rose and I again went out on the par 3, same format as before; Rose starting on the tee, me chipping on from about 35 yards. This time we managed to play 4 more holes (13 in all) before I got too tired, and we finished all square.
Yesterday Rose played golf in the Captain versus Vice Captain team challenge. This event takes place at an external course (this year it was at Mentmore, near Leighton Buzzard). It was a team competition, with teams of four, Stableford scoring, with the best two scores counting on each hole, best three scores on the par threes. Rose's team won, with 90 points total, so congratulations to the winning team: Rose, Jan, Margery and Alison. There is a nice trophy which they each get to keep for three months; Rose has it first.
The summer sport definitely helps pass the time. I am enjoying watching India and England at the cricket and the US PGA golf tournament in the evenings. Tomorrow it is Wales versus England in the rugby, and next month the rugby world cup from New Zealand.
My health continues to be OK, although I am still a bit weak. I have been reading the blogs of some other leukaemia sufferers and I think that so far I have been lucky, at least with the transplant - having a sibling donor and both of us being CMV negative are both big advantages. I have ordered a Nintendo Wii with "Wii Fit" to try and do some regular exercise at home, and recover some of my muscle tone; I will let you know how I get on with it.
On Wednesday, Rose and I again went out on the par 3, same format as before; Rose starting on the tee, me chipping on from about 35 yards. This time we managed to play 4 more holes (13 in all) before I got too tired, and we finished all square.
Yesterday Rose played golf in the Captain versus Vice Captain team challenge. This event takes place at an external course (this year it was at Mentmore, near Leighton Buzzard). It was a team competition, with teams of four, Stableford scoring, with the best two scores counting on each hole, best three scores on the par threes. Rose's team won, with 90 points total, so congratulations to the winning team: Rose, Jan, Margery and Alison. There is a nice trophy which they each get to keep for three months; Rose has it first.
The summer sport definitely helps pass the time. I am enjoying watching India and England at the cricket and the US PGA golf tournament in the evenings. Tomorrow it is Wales versus England in the rugby, and next month the rugby world cup from New Zealand.
Monday 8 August 2011
T+46: Haemoglobin
Today was clinic day. I have to keep drinking the three litres of fluid to look after my kidneys. The whole transplant process places the kidneys under stress, and the extra fluid minimizes the long term damage to them; so be it.
My blood results showed an increase in haemoglobin which means my new stem cells are finally making red cells. I hope for a steady increase; the more haemoglobin I have the more I will be able to do. It increased from 8.9 to 9.6 - my "normal" value is 14, so a way to go yet, but if the trend is upwards I am happy. My other blood counts are also fine. Next week I am going to restart taking Glivec (Imatinib). There is not much evidence either way but the most recent study of ALL post-transplant seems to indicate it is advantageous to take it for 2 years.
A while back I posted a puzzle that I thought was really difficult - http://ianandleukaemia.blogspot.com/2011/06/cambridge-cryptogram.html. Patrick and his Dad both came up with solutions, so congratulations to them! Patrick has posted his working as a comment to the above post if you want to see how he did it. Curiously, although his Dad came up with the right answer, the values for the letters are different (Patrick's match the answer in the book). This means that there are multiple solutions! There is one more thing that troubles me; the original puzzle is in a book of IQ puzzles, all the rest of which take only a few minutes to solve. But even with all the help Patrick got from the Internet, he still clearly spent a few hours on the solution, and his Dad spent much longer doing it all manually. Perhaps there is some clever way of solving the problem in a less labour intensive way?
My blood results showed an increase in haemoglobin which means my new stem cells are finally making red cells. I hope for a steady increase; the more haemoglobin I have the more I will be able to do. It increased from 8.9 to 9.6 - my "normal" value is 14, so a way to go yet, but if the trend is upwards I am happy. My other blood counts are also fine. Next week I am going to restart taking Glivec (Imatinib). There is not much evidence either way but the most recent study of ALL post-transplant seems to indicate it is advantageous to take it for 2 years.
A while back I posted a puzzle that I thought was really difficult - http://ianandleukaemia.blogspot.com/2011/06/cambridge-cryptogram.html. Patrick and his Dad both came up with solutions, so congratulations to them! Patrick has posted his working as a comment to the above post if you want to see how he did it. Curiously, although his Dad came up with the right answer, the values for the letters are different (Patrick's match the answer in the book). This means that there are multiple solutions! There is one more thing that troubles me; the original puzzle is in a book of IQ puzzles, all the rest of which take only a few minutes to solve. But even with all the help Patrick got from the Internet, he still clearly spent a few hours on the solution, and his Dad spent much longer doing it all manually. Perhaps there is some clever way of solving the problem in a less labour intensive way?
Wednesday 3 August 2011
T+41: Golf
Today Rose and I went out on the par 3 course at our club again. I was very keen to see if I would be more able to play, and the answer is that I am less tired than last week. We played the same format as last time; Rose teeing off as usual, and me chipping from about 35 yards. We played all 9 holes, and Rose won by two shots. I used a buggy to get round like before - the weather was hot and humid, although fortunately there was a light cooling breeze. We are going to make this a weekly outing on a Wednesday, to give us a way to gauge my progress.
Yesterday Rose played in the ladies open at the West Essex Golf Club festival of golf. The format was four ball/better ball; Rose partnered with Jane, last year's lady captain at our club. There was a large field of nearly 60 pairs, and Rose and Jane came equal fourth, and had the best score for the front nine for which Rose won an iPod shuffle. Many congratulations to Rose and Jane on a fine performance.
Yesterday Rose played in the ladies open at the West Essex Golf Club festival of golf. The format was four ball/better ball; Rose partnered with Jane, last year's lady captain at our club. There was a large field of nearly 60 pairs, and Rose and Jane came equal fourth, and had the best score for the front nine for which Rose won an iPod shuffle. Many congratulations to Rose and Jane on a fine performance.
Monday 1 August 2011
T+39: My birthday
Yesterday was my birthday, and many thanks to all of you who wished me well and many happy returns. It was a quiet day, but a remarkable thing happened early in the morning whilst we lay in bed. A woodpecker came to the bedroom window, and tapped on the glass! He came back twice more, but flew off never to return when Rose fetched the camera!! It was really special to see; woodpeckers are rare enough in our garden, let alone one coming to the window.
We had an Italian birthday dinner - spinach and pesto lasagne followed by ice cream coupe. I had a glass of Chiante to accompany the meal, a 2004 Isole e Olena that was delicious.
Today was clinic day, and for the first time I went without Rose. Since I am feeling OK, there was not much to discuss with the doctor - I am pretty much on track. I am keen to know if I have to continue drinking three litres of liquid a day; they will phone this evening to let me know. Drinking three litres is difficult - basically I have a glass of something (water, tea, etc) every hour, with a couple of glasses over dinner and a couple of small energy drinks on top. The hours click over with regularity so sometimes it seems I am continuously drinking. It is definitely not natural drinking so much (and of course weeing all the time too).
I have been home for over three weeks now, and I think I am getting stronger with each passing day. They can perhaps start weening me off the immune suppressants a little bit ahead of schedule ... we shall see.
We had an Italian birthday dinner - spinach and pesto lasagne followed by ice cream coupe. I had a glass of Chiante to accompany the meal, a 2004 Isole e Olena that was delicious.
Today was clinic day, and for the first time I went without Rose. Since I am feeling OK, there was not much to discuss with the doctor - I am pretty much on track. I am keen to know if I have to continue drinking three litres of liquid a day; they will phone this evening to let me know. Drinking three litres is difficult - basically I have a glass of something (water, tea, etc) every hour, with a couple of glasses over dinner and a couple of small energy drinks on top. The hours click over with regularity so sometimes it seems I am continuously drinking. It is definitely not natural drinking so much (and of course weeing all the time too).
I have been home for over three weeks now, and I think I am getting stronger with each passing day. They can perhaps start weening me off the immune suppressants a little bit ahead of schedule ... we shall see.
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