February update

Things are moving along.

My consultant has now been informed of my intention to have HSCT. He did the usual neurological consultant thing told me people die from the transplant and the risk of infections after. Well the part about death is yes, years ago when this first started people did die – radiation played a big part in this, but now treatments have evolved 2% death rate is no longer valid. Russia, in all its time treating with HSCT, hasn’t lost anyone yet relating to the procedure. As for infection that’s a risk with any hospital anywhere – unfortunately I’ve had operations in the past in Bristol hospitals and got infections whilst still in their care.

So now I pay for ALL my pre-treatments and checks. It’s amazing that the NHS has only one hospital doing the HSCT and not many fit the criteria for their procedure. You have to understand they have to stick to these criteria along side all the trial hospitals around the world to give accurate figures later, so i wasn’t too upset or shocked to know my treatment wasn’t going to happen in the UK for me.  If and when it will be, my progression will be too far gone to have the treatment. I am not alone I’m joining all the other patients around the world facing the same problems.

Onward and upwards then!


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