Treatment Timings

And hot on the heels of 'cycle 2 was crap' comes my next rather annoyed entry 'how goddamn long do I have to be on treatment for – the entire sodding summer and beyond?'

Trying to get a handle on what on earth will be happening to me, month by month, let alone week by week, has been my mission for the past few Parkside visits. And now – I think – I have a rough idea of what is coming up. Let's call it the Timetable of Shite, shall we?

It will all depend on how many cycles of treatment I have – the average is 5.5 to get the paraprotein to its lowest, and I was hoping to get away with 4 as my PP started pretty low already. But now that Cycle 2 has been so pathetic, I'm feeling that 5 cycles might be more likely – am really hacked off, as every cycle adds another 3 weeks to being on the Myeloma Merry-go-Round – and this bloody circus just don't come with many laughs.

So, assuming it is 5 cycles, my next 6 months (yes, 6 bloody miserable crappy months – what a total waste of an impending spring and summer) seem to look something like this:

Timings:

Cycle 1: 12 Feb to 6 March

Cycle 2: 7 March to 28 March

Cycle 3: 29 March to 17 April

Cycle 4: 18 April to 8 May

Cycle 5: 9 May to 29 May

4 weeks off post-chemo to rest the marrow and allow it to recuperate: 30 May to 27 June

Stem cell harvest (4 days of mega injections then 3-4 days of 'harvesting', i.e. taking via both my arms, hopefully a huge number of stem cells which will have very, very little trace of myeloma by then – hopefully) 28 June to 10 July

2 week preparatory time for the stem cells to be 'cleaned' even further, for my recovery and checking that everything bloods and health wise is in order before the SCT: 11 to 25 July

Stem Cell Transplant 25 July to 10 August – 2.5 weeks of pure abject misery (not to be too down on it, but you can't polish a turd)

August/early Sept – 1 month initial recovery, then general full recovery for 2-3 months afterwards. Oh yes, and growing back of the hair, sigh.

Well that just about ruins the entire year doesn't it? Given that 2015 was pretty ropey with everything going wrong health wise, and that since this Jan we have been on the hamster wheel jumping every hoop and having every test, the realisation that I won't be done with this shit till the Autumn is just about as depressing as it gets.

Yes, maybe, maybe I will only have to do 4 rounds of treatment (I am massively hoping for this) – and then it just takes me to late August instead. Oh look – that's the whole summer ruined still in meeting – will call soon as can x. But at least we could maybe get away in Oct/Nov and get something in the diary to look forward to – that'd help a bit.

I am going to ask Prof if there is anything that can make this shorter (wishful thinking?) as the last time I went through this it was a 4.5 month process from treatment starting to getting out of hospital post-SCT. So why the hell is it now 6 bloody months???

Yes, there are a couple of 'breaks' built into the process but I don't think we'll quite be upping sticks and heading off to the Maldives in the middle of everything. And until my breathing / pulmonary hypertension picks up (2 weeks on tablets so far – no improvement as yet) or my back pain buggers off (saw the pain guy yesterday, am now rattling with yet more painkillers and bigger pain patches) then I'm pretty limited as to what I can do anyway…

Blimey, I hope I've calculated these timings wrong and somehow it's all over a lot sooner than this. Because there's always – ah yes, the elephant in the room – the rather hefty chance that the whole thing won't bloody work anyway, and I get all the way through to having a transplant again, and don't get the good result that I was so lucky to get last time.

Bloody pissing bollocks. I SO hope that it does go well and that Prof's words 'I want to get you another 6 years of remission' somehow come true. Mind you, he'd be well over 80 by then, so probably not around still to see if he managed it anyway..

Here's to i) my timetable being totally wrong and somehow there being a shortcut that gives me some piece of 2016 to look forward to, and ii) it actually working, and me getting back to being 'me' again at some point. (Hard to remember already, now I am 15 stone 4, look like a fucking sumo wrestler with a small mouth in a hugely fat face, have skin that hurts all over, giant cankles and less mobility than my 86 year old mother..)

At least I am going out for cocktails tonight – and at this rate, they are going to take a right battering…. x