Can't believe I forgot to add this bit as its pretty critical to the next few months – and as usual is a total bloody mindfuck.
Number One fact – Ray said that he has probably seen more Myelk a patients in his career than probably anybody. Given that, he finds it extraordinary that he has NEVER come across anyone with a medical status, issues etc the same as me. Apparently I am unique. Which is precisely what you never want to be in medical terms. I know myeloma is different for everyone but he's never quite spelled it out that baldly that he's got nothing to help direct him in terms of learnings from other people – nor any way to guide what we can anticipate going forwards.
Number Two Fact – he doesn't quite know what he is wanting – or what I am needing – the Stem Cell Transplant to deliver. My issues have lessened thanks to the chemo, so yes I am still somewhat breathless (but WAY better than I was) and yes I still have back pain and a few minor things – but I'm actually better now than I have been in well over a year, maybe 18 months. I almost feel like me, which is bloody great.
So why do a bloody SCT then? Can't I just stop all this shit and crack on as I am?
Answer is that I have to go ahead as the SCT nightmare is the main thing that should help lock me into remission, or provide me another 'very good partial remission' as I got last time.
These last three weeks only on partial treatment due to my respiratory collapse have resulted in my PP starting to creep back up, so there is early evidence that it would probably keep doing that, then cause more trouble again, if I did not have the SCT.
He can only seek two things from it though – firstly, that it further improves the breathing, bone pain, skin tenderness etc and keeps these under control with a low PP so I can get on with life. Having had 6 years of amazing remission, this would obviously be what we are very much hoping to replicate, albeit maybe partially, again.
The other thing is to know what percentage of plasma cells there is in my blood pre-SCT and see if this is significantly reduced by the SCT, ideally down to a very low number. Only way to do this is to do another Bone Marrow Biopsy at the point when we stop chemo, so he knows 'the number' then and can then see if the SCT brings this down. Joy of joys – somehow I have only ever had 1 of these back in 2008 and literally screamed the place down. Funnily enough, a bloke pulling out fluid and matter from your spine with a corkscrew is incredibly painful! I am promised that the sedation will work this time but it's not high on my 'love to have that test' list, though will be needed.
So, the prospect of an SCT where we don't fully know what we need it to for, but have to have it – bloody peachy hey??!
Onwards we go…. Apparently I have been approved for the new US drug now, so just got to wait for the fecker to come, still.
S x