Just been in to see Prof – my last Dark Side visit pre the big trip.
On the (considerable) upside, both my recent Bone Marrow Biopsy and PET CT scans are clear, which means I am technically still in remission. Clearly, a major bonus.
On the downside though, he wants me to continue having fucking Velcade as a second drug alongside the monthly Dara all-day joy (today's fun fun fun).
So, while they said that it 'ran out' as a protocol last month, and I would not have it again, it now seems that they have had me on a 'non-standard regimen' which means it can be continued after all. WTFFFFFF????
On the one hand, it's sort of good as Dara works best when in conjunction with a second drug. So – it is pretty much the only option for me at the moment.
On the other hand, it means that I have to turn up here three times a month for a 30 second injection that takes up to 2 hours once you factor in having bloods taken, calling pharmacy, waiting for the drug to be made, hanging on till a nurse is free and giving it.
At least I have managed to wangle that I will not have steroids with it, as those are the fuckers that ruin your sleep. While I am well, it seems this is sort of acceptable. His nurse Linda was saying 'we can reduce the number of steroids', but I managed to say 'I just won't take any' and think I got away with it..
Arse bollocks – there is no escaping this place.
Except for the next three weeks – hallelujah! S