May 2009

Now feeling pretty bright eyed and bushy tailed and feeling more inclined to do some exercise, cycling, walking etc.I have also started a small drawing group and am beginning to think of getting involved with creative projects. My energy is still of course related to where I am in the cycle of blood transfusions.Immediately after a transfusion I feel the benefit of it and am able to run for a short distance without being out of breath. However, as my blood levels sink to the low eights or sevens I feel quite breathless when climbing the stairs.I am still requiring 3 units of blood every month or so and platelets every week. My latelest platelet level is around 15 to 20.

Another visit to London to discuss the treatment options available ie

• continued supportive care with blood and platelets as required, with cyclosporin

• a second course of ATG

• unrelated donor bone marrow transplantation.

There are advantages and disadvantages with each: the carry-on-as-we-are choice is restrictive and risks a flip over into leukaemia; a second try with ATG has only a 35% chance of success and is prone to relapse; the only true chance of a cure comes with the bone marrow transplant but that has a risk of mortality through the process and also runs a slight risk of graft versus host disease. Not a straightforward choice but at present the general leaning is towards a bone marrow transplant.

Blood was taken to send to the Anthony Nolan Trust and to check on potential unrelated donor availability.Apparently if I have a common tissue type then the chance is one in a thousand. However if I have an uncommon tissue type my chances are one in several million. Let's hope I'm common - in this instance.

My iron level , after all the transfusions I've had, is rather high so it has been suggested that I have chelation therapy . Iron is not automatically removed from the body so a chemical is pumped in through my line, the iron attaches to this and is expelled with the urine. This will be an orangey red colour! The danger of leaving the iron untreated is that it deposits around the heart and liver and can cause damage.

It is now nearly 9 months since my ATG

Had another weekend in Cornwall - glorious weather. Went for a longish walk along the coastal path.Felt a real spring in my step on the flattish ground but needed to stop for a breather on the steep upward steps.

have been given the all clear regarding my tinitus. It sounds as if the azithromycin might have been contributory but a virus cannot be ruled out. The advice is to avoid azithromycin in the future if an alternative is available. Anyway it's good to be back to clear hearing and to be without the constant background noise.