Having returned from the holiday I am now back on the pump (desferrioxamine)- you just have to remember when you wake up and your brain is still a little foggy, that you have to gather up the pump from under the pillow - or it snags! My iron level is steady at around 2200. As this is too high I may need to have the dose increased. My kidney function seems to have improved so am back on cyclosporin.
I met a lady in the chemo unit who had had a BMT in the hospital I am aiming for. I would have been keen to chat but when I got back after seeing the doctor she had disappeared. I am sure that if I really want to get in touch the chemo nurses could pass on my contact details to her.
I have had a few mouth ulcers so have begun to use the chlorhexidine gluconate mouthwash which seems to improve things. I have also been feeling a little nauseous, particularly in the mornings. When I do eat I find that after a few mouthfuls I feel as if I am eating on a full stomach. Not really a pleasant state of affairs but not a big enough problem to make a fuss about.
Went up to London to see how things are progressing. Found out that I have a fully matched unrelated donor! (MUD). It doesn't really seem right to refer to these selfless people as MUD! Both nick and I felt buoyed up with this information feeling that a cure is now within the realms of possibility.
It was very clearly pointed out that due to my age (56 years) and the fact that the donor is unrelated that the bonemarrow transplant should be carried out in a centre where there is experience of BMT's specifically for Aplastic Anaemia. Apparently there are subtle but important differences between leukaemia transplants and those for Aplastic Anaemia ad thus the need for expertise.
My choice of hospital would be Hospital S as it is closer to home so it remains for me to find out how experienced the BMT dept is with AA before making the decision. Part of the reason for the choice is ease of visiting for family but I fully understand the thinking behind having it done in London and should Hopital S be found to be wanting in experience I will have no hesitation in opting for the former.
14th Aug: My ferritin level seems to be coming down gradually with a current level of 1,852 so good news there.
The high point of this month is yet to come, with number 1 son's wedding on the 29th. We may be pushing our luck a bit though with fitting in another holiday break just before it!
This is our favourite holiday destination - a beach hut in South West Scotland where I grew up, right on the sea (you step out of the garden on to the high tide mark) and guaranteed relaxation.
The weather was a little more "Scottish" than our previous holdiday, changing every two hours or so but it still did not prevent us from doing what we wanted to. Swimming of course was not an option with the Hickman line but we did manage to do some kayaking (choosing the right conditions and my own competence gained over a geat many years meant that the danger of capsize was negligible). Hill walking was also on the agenda - nothing too extreme and a couple of six mile cycle rides kept us fit. Nick went out for a couple of runs but I am afraid that even with topped up blood I am not quite ready for sustained running.
Of course during this time I was once again without the pump. This period was also extended to cover the wedding - just as well since the pump, discreet as it was, did not co-ordinate with my other accessories!
Although August has been pretty miserable weatherwise, the wedding day was blessed with sunshine. The whole day was a great success. The venue where everything took place was an amazing house and grounds dating back to the twelfth century, once called the most beautiful house in England. The bride was beautiful, the groom handsome and the flower girls, delightful There were men in uniform, men in kilts and pretty girls.I really don't think the day could have been improved on. It was thoroughly enjoyable and I even had the energy to spend most of the evening dancing.
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