These posts become less and less frequent, coinciding as they do with my clinic visits. At some stage I will just not bother to write any more, and the story will end, but seemingly not now!
I realised this week as I was driving to the hospital that it has been three months since someone stuck a needle in me. This is the longest interval since October 2010. You get used to it! I am healthy, and in fact have flown abroad twice without getting an infection, so there was not much to say in the clinic. From the blood they took they will do a BCR-ABL test as usual, together with a ferritin level to make sure that the venesection was indeed successful. My next visit will be six months from now, in January 2015. When I first visited the transplant clinic they told me that they will continue to monitor me at least once a year for the rest of my life; seems like soon I will be at that frequency.
The nerve pain in my left toes continues to be the most significant after-effect of the chemo. I have been taking 300mg of Gabapentin twice a day for the last three years. Recently, I have tried to reduce this to once a day in the evening, with some success. I hope one day to be able to live without this drug. I also still take antibiotics twice a day, and will do so for two more years, but this will be much easier to stop than the Gabapentin.
Sunday 13 July 2014
Friday 11 April 2014
Positive Outlook
I had another checkup at the clinic yesterday, and had a rather upbeat discussion with my consultant.
Two weeks previously I received the latest results of the venesection I have been having (blood-letting to you and me) at my local hospital, and my ferritin levels are normal. They will check the level once more in three months just to make sure it did not rise back above normal, but hopefully it means no more venesection.
The last two times I flew (in January and March) I got quite ill when I came home, and I wanted to know if this was more likely to happen to me because of the immaturity of my immune system, and if there was anything I could do to prevent it happening. My consultant told me that although my immune system is not as "knowledgeable" as you would expect in someone of my age (i.e. it has seen fewer viruses), there is nothing that can be done and I should forget about it and just get on with life! We went on to discuss the chances of a relapse of the leukaemia ...
When I was first diagnosed, I was told that the 5 year survival rates were 40%. Yesterday, my consultant said that because the type of cancer I had was very aggressive, the vast majority of relapses would occur within 6 months to 18 months post transplant. It is almost 3 years since my transplant, and whilst there is a chance of a relapse, she said it was so small that it was almost negligible. In other words, my condition is as good as it gets, and my life expectancy should be more or less the same as any other man of my age and general health; I am far more likely to die of something else than a relapse of leukaemia. You will notice that I am dancing around the word "cured", as all this is against a backdrop that my BCR-ABL test results continue to show a weak positive (meaning the abnormality has not gone away). But I did leave with a very positive outlook on life.
In March we went on vacation to Mexico to meet and greet the grey whales that swim into the lagoons on the pacific coast to breed and birth. We planned this holiday whilst I was in hospital in 2011, and finally were able to go this year. It is a unique experience, as the whales swim up to the boats and play (they like to be splashed and petted). Here is a selfie with a mother and baby whale ...
Two weeks previously I received the latest results of the venesection I have been having (blood-letting to you and me) at my local hospital, and my ferritin levels are normal. They will check the level once more in three months just to make sure it did not rise back above normal, but hopefully it means no more venesection.
The last two times I flew (in January and March) I got quite ill when I came home, and I wanted to know if this was more likely to happen to me because of the immaturity of my immune system, and if there was anything I could do to prevent it happening. My consultant told me that although my immune system is not as "knowledgeable" as you would expect in someone of my age (i.e. it has seen fewer viruses), there is nothing that can be done and I should forget about it and just get on with life! We went on to discuss the chances of a relapse of the leukaemia ...
When I was first diagnosed, I was told that the 5 year survival rates were 40%. Yesterday, my consultant said that because the type of cancer I had was very aggressive, the vast majority of relapses would occur within 6 months to 18 months post transplant. It is almost 3 years since my transplant, and whilst there is a chance of a relapse, she said it was so small that it was almost negligible. In other words, my condition is as good as it gets, and my life expectancy should be more or less the same as any other man of my age and general health; I am far more likely to die of something else than a relapse of leukaemia. You will notice that I am dancing around the word "cured", as all this is against a backdrop that my BCR-ABL test results continue to show a weak positive (meaning the abnormality has not gone away). But I did leave with a very positive outlook on life.
In March we went on vacation to Mexico to meet and greet the grey whales that swim into the lagoons on the pacific coast to breed and birth. We planned this holiday whilst I was in hospital in 2011, and finally were able to go this year. It is a unique experience, as the whales swim up to the boats and play (they like to be splashed and petted). Here is a selfie with a mother and baby whale ...
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