How on earth do you choose?

Just back from seeing Prof and am still reeling at the latest. He is very keen for me to move onto yet another drug – Daratumumab – to see if this can bring my PP down to zero, and remission.

So – asked the obvious question about how long I would need to be on it for, and how long it takes to actually have an effect on the PP – answer to the second bit was 'a month or more' which was bad enough. But the answer to the first bit was…

you'll love this…

8 months. Yes, 8 more months of sodding fucking bastard, ruin your life, chemo.

Which would mean, having been on this since February that I would potentially 'finish' chemo in… late March 2017. At which point I would then get prepped for Stem Cell Transplant and that would take me through to … oh about June 2017. Another. Whole. Year. Of. This. Monumental. Shit.

Yes, I did then start crying in his office. What the hell else are you supposed to do when your whole world is being dragged even further and further away from you, and there is no sign at all of you ever being able to get back to reality? Add in the 18+ months of crappy pain, illness, tests and general misery that I'd already had before treatment even started this year and that adds up to 3 whole years of lousy health, feeling crap, not being 'part of life' like everyone else and even after all that – no guarantee that the SCT will work or that treatment will stop or that I might one day get some of my much loved and very, very, very much missed 'old life' back.

Fucking hell.

Had a long debate with him over the merits of doing this new drug – basically it is meant to be great (yeah, but aren't they all) and it might reduce my PP down from 2 to zero. (Just like all the other ones were supposed to, but didn't). It also does some complicated stuff that's good for you as well, but I won't go into that – not least because its a total cellular mind fuck.

Asked him 'how about we go ahead now into SCT with my PP on 2?' – because surely 2 is nearly zero, right? And of course he can't give me any stats on just HOW MUCH BETTER zero is than 2 – because there aren't any. So you have no idea if you are signing up to something to is barely any better than where you are right now – and letting it eat up and ruin another year of your already short life – or whether to not do it would be the most foolish decision ever, in the longer term scheme of things.

And there are some really appealing bits to it – not. First dose involves a long day of 8-10 hours in the High Dependency Unit of Parkside as it is fraught with dangerous side effects. Can't wait.

Then it is a weekly dose for 8 weeks – so you can't go away anywhere. And each of those takes about 5 hours.

Then it goes to a dose every 2 weeks, then eventually monthly – but that's only when you are 5 months in and there is NO WAY on this earth I am doing chemo for that amount of time.

So have agreed with Prof that I will do a month. Which probably means a minimum of 2 months. And we will see if it brings down my PP. If not – it can fuck off and go infect some other poor sod.

Then we need to see where my breathing has got to (am seeing Charlotte at 2.30pm today to get results of exercise test from yesterday and agree a way forward on this). At the moment Prof seems very keen to fob me off to Kings Hospital for my transplant – if I ever get off chemo long enough to have the sodding transplant – and King's is miles away, I've never been there, don't know any of the staff, would be hard for visitors to get to and is apparently a bit of a shithole compared to Parkside. Well, doesn't that just lure you in..?

So for now, more miserable chemo with no sign at all of the end in sight. Very very gutted and desperate to have my life back. Spending your whole time going from one medical appointment to another, being stabbed and jabbed and bled at every opportunity, never ever getting a diagnosis or having any treatment actually work (breathing issues now 2 years? back pain the same?) is unbelievably draining and exhausting. Having no chance of exercising or building up positive endorphins due to both of these. Having no chance of working as illness, fear and pain dominate every waking moment. It's honestly one of the worst ways to live as I feel trapped in a never ending vortex with really smooth walls that I can't get a grip on and can never clamber up it far enough to actually get out.

And so the only thing that feels nice, is seeing people over dinner and drinks. Ah but that's the thing that makes me fat – and with no chance to exercise this off, it's a bad old spiral to be in. And did I mention that the house is a builder's hellhole for at least the next 2 months as well? I'm hiding in my bedroom on the bed most of the day, catching a kip and getting bored with my iPad on a daily basis.

Yes – there's a bit of feeling sorry for myself in here, but I really do feel sorry for myself. And for Hawksey, because he's not having much fun as a result of this either. Bit at least he's back at work and that's probably the best place to be right now.

I just have no idea what the coming weeks and months will bring. Apart from more bruising, I'm pretty sure there will be a lot of that. 

beyond that? Who the hell knows? We can;t go ahead and book the 'post SCT December wonderful holiday' that we thought was absolutely likely to be happening. Nor the 'Caribbean boat trip with J&R to replace the one we had to cancel this year' – no, even looking at a whole year later than when we were meant to go, this is still not a remote possibility. Nothing bloody is.

Don't really know what to do now. 

Dog walk with David Rea it is – going now. Poor man doesn't know what's about to hit him…

S x