Stem Cell Transplant – Oh God, Here We Go…

Hello lovely blog readers – taking a few mins off from the mince pies & boozing??? Hope this doesn't put a dampener on your Xmas, but I thought you might as well know a bit of detail about what's coming up, so get a cup of tea, Terry's Choc Orange and read on…

Well, I kind of wanted this time to come, if only to escape a sixth round of chemo but now that it's looming up all quite quickly, I have to say I am absolutely shitting myself. My Stem Cell Transplant is offically on the horizon for January and I am sitting here on my sofa, just wondering how in god's name my life has turned into this in just the past three short months. If only someone could tell me it was all a bloody mistake and I could have my life back, I'd bite their arm off, give up my house, soul, bank balance and anything else they asked for, and do anything that this world really needed, just to make all this go away forever. Sadly, there's no chance of that, so this is what's going to happen instead. Oh, and it still doesn't make great reading – there's not been a great deal of fun of late,so this is all pretty much cancertastic shitsville crapology… read on at your peril.

So…. here's the great agenda for Jan to April 2009 – it breaks my bloody heart to write this, because those of you who know I keep a chores list won't be surprised that there were lots of entries on it already for 2009…none of which are possible any more. 'Decide whether to go to Jordan, Cambodia & Laos, Sri Lanka, Damascus etc' – whoops, don't think that'll be happening then. 'Book trip for anniversary' – no, cross that off too. Even the 40-something, prosaic 'buy new John Lewis garden furniture' feels a million miles off right now – everything in life has been eclipsed, obscured, taken over, shat on and annihilated by this bloody disease. Maybe I'm just in a particularly dark place this week, but as you'll see from the stuff below, my life is no longer my own as I am being sucked further and further into the shitey tube of treatment, hospital, drugs and grimness, from which there is no short term escape, even for good behaviour.

Yes, its time to talk about my Stem Cell Transplant, or 'SCT' (even in Oncology there are three letter acronyms) and the lovely timetable of joy ahead. Here we go and welcome to 2009…

Jan 1-4: Four days of Hawksey having to give me injections to stimulate the production of stem cells – and a very Happy New Year to you too. Am told it makes your bones and torso hurt as they literally fill up with excess stem cells (if you kept going with the drugs, apparently you'd set like a rock after 2 weeks)

Jan 5, 6, 7: Three days at the London Clinic in Regents Park to have the stem cells 'harvested'. This involves being attached to a monster machine and needles in both arms – one taking blood out, capturing the stem cells as it flows, then passing it back into my body. Takes 4-6 hours lying flat each day, hopefully enough stem cells produced for 2 SCTs – this one and another one further down the line when this one fails…which it will for sure, because thats how Myeloma works. There's a possibility that I will have no or not enough stem cells despite the drugs, in which case god knows what will happen, but hopefully there will be enough for the rest of this to go ahead.

Jan 12th: Into Parkside for the SCT itself, what they describe as an arduous 16-21 days in hospital during which I will receive a high-dose chemo to wipe out my immune system, then receive my stem cells back and 're-grow' everything, hopefully with less Myeloma in it. Will lose my immunity to infection, my hair, my dignity, my appetite, energy etc - it feels very counter-intuitive to go into hospital feeling relatively well, knowing you're going to be dragged through the mill and back, puking as you go, but this is the best course of treatment so there's no choice and the date is getting closer, oh fuck.

Earlyish Feb: Hopefully escape home to my man, own bed and kittens. Have to return to hospital every few days for check ups, or be readmitted if catch any infections. 6-8 weeks slogerama recovery time at home until you eventually feel 'yourself' again, around 3 months from the start of the process. A long old haul for me, Hawksey and some of you too… I am really sorry to have to drag you through this too.

And the real pisser? Well there are two big things on my mind right now.

Number One – there's only a 50/50 chance of the SCT working and I won't even know for about 3 months if I have got remission or not (so you don't even get to leave hospital going 'yay, result!')

Number Two, either way, it will fail at some point so they are already talking about doing a second transplant, maybe three months after this first one or possibly a bit longer depending how I tolerate this one. So even when the first SCT is done, its not like I can even focus on thinking about April and getting back to normal (god, do I miss 'normal' so, so, so, SO much) because I may then have to go through a Donor (Allogeneic) Transplant to improve my overall chances of survival. My sister & brother are currently being tested to see if they match (again, only a 50% chance that one of them will) – so the Prof knows what options he has on the table. If they don't match, the next step is to check the bone marrow donor list for a MUD (Matched Unrelated Donor) person. Both the Donor Transplant and the MUD one are pretty high risk, so we're just getting our heads round what this means and what our options might be. More on this when I know if I'm lucky, and either Cathy or Richard are a match.

Gosh, lots to take in hey? Tell me about it. It's a compete bloody mind fuck. Lots of fifty fifties, lots of 'you'll feel like shit', lots of 'it might work ,it might not', lots of 'you could do this next or maybe that'… and a frightening absence of guarantees, certainties, definites etc etc - or nice long periods of good, painfree health and normal living which is what I crave like you wouldn't believe. At the moment when I look in the mirror I can hardly recognise the face that's looking back at me, it's the weirdest thing ever. Today – puffy and furry from steroids, bleary from 3 months of being up from 4am every night – coming up, a switch from furball to baldy no-hair and possibly thinner… probably not the best look either I suspect..

Seeing Prof this Fri (19th Dec) to clarify a few more things about all this before we go to Holland for 4 days pre-Xmas. So, maybe there will be some good news or stuff that makes this all feel a little less terrifying than it feels right now. But yeah, it's a rough time and I'm having to start getting my head round needing to ask for help. It's a toughie for any of us independent people who don't want to impinge on others and cause trouble or inconvenience…but I may have to learn a new skill as suddenly even I am having to admit 9to myself and now you) that I actually can't manage all this on my own, or even with Hawksey's brilliant, loving help… so you never know, you may be getting a call some time, or just let me know if you're up for pitching in with a spot of help in Jan/Feb. 

Much love to you all – oh and Happy Xmas too (sorry, fucked up on getting my xmas cards out this year, but you can probably guess why) Cheers, bottoms up, get bevvied and make the most of the time off my lovelies, Scotty x x x x