A brief update
Raymond has now had 2 cycles of his maintenance treatment - and they have been problem free
We are now on a new routine - 5 weeks between each round of maintenance. He gets weekly blood tests for 4 weeks and is not tested the week before maintenance as his bloods have to be checked the day treatment starts.
So far we have experienced no side effects from the Azacytidine [Vidaza in the USA ] other than some slight erythema at the injection sites.
He was seen by one of his consultants today who is very very pleased with the way things are going - to the extent that they are considering removing his Hickman line after the next cycle of Azacytitdine.
He has re-commenced horse-riding and is now allowed to travel on public transport - so life really is starting to return slowly to normal.
We had hoped to be able to go to Lourdes [ at his suggestion
] in October - but with the way that the treatment schedule is working out this is not possible - 9 days is not really long enough as virtually 6 days would be devoted to travel [ he's not yet allowed to fly ] - that is going to have to wait till autumn next year
Thank you for all your support