Rug Pulled From Under Feet

Fuck. I didn't see this one coming. I've spent the past five months dutifully having chemo. Turning up on time, week in week out. Biting the bullet with endless cannula insertions. Smiling gratefully at the pharmacy staff as they hand over piles of tablets I don’t want to take, but do. Being covered in bruises. Having jabs in my stomach to the point my tummy is sore when I do my trousers up. Listening to Prof’s stories instead of him answering my questions. Being unbelievably patient and stoic when my para protein hadn't moved since March in the belief that all this treatment has to be having some positive effect. Asking Prof if we can 'have a conversation about next steps' to try and move things forward. Being told that 'when your PP gets near 1 then yes'. Waking up at 3am the other night to write down the questions I really wanted him to answer, about moving on from chemo Into the stem cell transplant phase. Really thinking that finally I could get some timings pinned down so I might feel the months ahead were a bit of a more known entity.

Anyway to cut a miserable day short, H and I went to see Prof on Wednesday.

Expecting to agree that my PP has hit a plateau and that its time to move towards stem cell. And to talk timetable. And come away with the roots of a plan for now and the next 3-4 months.

My how wrong we were.

Instead he threw us a complete bloody curve ball in saying that he isn’t confident to take me forward into the stem cell phase because of my breathing issues. And that therefore this isn’t an option until wither the breathing problem is sorted, or he can be given reassurances that it will not be a problem during the transplant.

WTF!!!!!!

He’s barely shown any bloody interest in my breathing stuff – instead it’s been me pushing for tests and keeping plugging away at asking for help. And now it becomes a complete bloody deal breaker in terms of SCT treatment!!!

And all the more stymy-ing given that I have been trying for over a year and a half to get the breathing issue sorted, so I’ve got cock all chance of getting it nailed in the next few weeks, months or possibly even years as no-one seems to be able to diagnose why I can’t breathe, let alone sodding cure it.

Fuck.

Amazing how something you really don’t want – a transplant – can suddenly become the most desirable thing in the world when it is suddenly whipped away from you.

And its made all the more annoying and frustrating by the fact I’ve been doing chemo for 5 bloody months. And there is Prof saying ‘why don’t you take a treatment holiday’ for a month or so. And then we’ll see where we are. ‘Holiday’!!!! As if it’s a bloody holiday. Its just a whacking great gap of uncertain time when my PP will go up again, negating all the slog of 5 months of hideous treatment, and with the very high likelihood that I will go back onto another new drug (he was banging on about yet another one that probably won’t work for me, Daratumumab, that he’d like to try on me).

Walked out reeling. And shitting myself as without the prospect of a transplant I am royally screwed. (And I’m pretty bloody screwed even with one).

But – things look a very small bit better today. Saw the chest specialist Charlotte Rayner yesterday and she is a) keen for me to do a specific test this coming Monday and b) up for convening a case review with Prof and the various lung etc docs to agree if they feel I could tolerate a transplant.

All bloody terrifying as Prof is basically saying that Parkside can’t manage me – there isn’t an ICU unit there if my breathing suddenly goes tits up (and as you can imagine, you can die within minutes if your lungs give up the ghost). ‘If it was renal failure’ he said ‘I’d transplant you like a shot’. Well great, typical me, I’ve got the wrong sodding organ failing.

So my options may be to either have the whole transplant somewhere like Kings London where they do have an ICU, or possibly – as Charlotte mentioned – to have the transplant at Parkside but then be transferred to St Anthony’s in Cheam, where they have a small ICU. Quite frankly, no-one as yet is putting their finger on the big question which is how much increased mortality rate is there for me to be transplanted given my lung issues. It is only 1% for patients under 75 years of age, under normal circumstances. But for me – no-one able as yet to put a number on it.

Shit buggery bollocks.

A wait till Mon for the latest test.

And then till probably next Fri to see Charlotte again and discuss the results.

And then who knows? Not me, that’s for sure.

In the meantime, I am off chemo, which is a very mixed blessing – and have not a clue at what on earth now lies ahead, let alone when.

All I know is my body is not in great nick and no-one right now has a plan for how to sort it. Least of all me.

Will keep you posted x