A Tough Few Days

I can honestly say, I have never felt as ill as I do now.

Its bloody terrifying as it can only go one of three ways

1 – I get better – now, wouldn't that be nice

2 – I stay the same – probably the least likely, but possible I guess

3 – I get worse…and you can work out where that one nets out

And it's a truly horrible feeling, when your whole body feels poisoned with something, but no-one can tell you what it is.

My skin is stretched and puffy – poor Mr H took my socks off for me tonight and they had dug in all around my cankles, never seen such a thick ridge line, and never gone 'owww' quite as much just getting my socks off for bed. Most of my body feels the same – you poke it and its full of 'water' – evil, sore, infected stuff that just bloody hurts – I reached up to get the squash bottle off the top shelf in the kitchen tonight and actually had to push one arm up with the other one as I couldn't quite get it, even willing the damn thing to move higher, to where I wanted it to. Same thing with trying to turn off a wall light last night – just couldn't reach it any more. It's all a bit grim.

The last few days have been really tough. Both on me and Hawksey. We've sat and looked at the medical timetable and have scheduled in some daytimes together when he will take time off work (the new plan, as we both realise how bad things are right now and need to prioritise some time together). And we've booked 2 nights in Le Touquet in April to go back to where we met. Plan is to walk Scrumpy on the big wide beach, go to the fruit & veg market, eat too much baguette, have a posh fruits de mer lunch in Le Perard and generally potter about, without there being a hockey festival on for once. Here's hoping we manage to pull that one off, as even something as simple as a 'drive to France' weekend feels like climbing a mountain right now.

Physically, I feel dreadful. It's like having terrible flu that just doesn't go away, minus the facial fever. I'm jumping through all the test hoops like a good girl, so had the VQ scan at Parkside last Friday then the lung function test at the Brompton late Fri afternoon. The weekend was pretty low key, but I discovered I can no longer walk to the tube here and at Parson's Green to get to Janine & Ross's – had to get J to come pick us up at her tube in the car, so we could watch the rugby together. A bit of a slap in the face as this is a trip we've made hundreds of times, and I can no longer do it. We did see our lovely friends David & Mandy from Harrogate for Sunday breakfast, which was real lovely – although I was pretty whacked afterwards. The price of nice conversation and chat..

I am losing capability by the day and its so bloody distressing. One day I'm still able to shower and get dressed, the next, I can't put my shoes on by myself. It might be something as small as being able to park and return a parcel to the Post Office, and then not be able to get out of the car fast enough, with traffic whizzing by. I met Liz T for lunch in Kingston on Thurs and almost lost it trying to find Carluccios (its inside sodding Bentalls) as I trailed pathetically along the top floor. Its times like that you realise that no shops have any chairs and how totally crap it is that suddenly I need one as I just can't get very far without a sit down.

So the natural question in my head, is 'is this going to get better, or is it the start of the end'? Yep, that's quite a biggie hey?

This first cycle of myeloma treatment has done nothing as yet to make things any better. And every sodding day, some new problem joins the already long list of shit. And when your heart/lungs no longer let you walk far (and there's a new chest pain that's popped up, plus a chest infection so I'm coughing and its damn sore all round) then that's a bad start. Add in the puffiness and soreness and the fact that every letter I get from consultants (these land thick and fast on the mat most days now) then there is clearly an inflammatory condition at play everywhere – and no-one knows what it is or how to tame the beast. Even standing at the kitchen counter is too much right now, I bend over watching the soluble paracetamol dissolve in its little glass 4 times a day, in between the other painkillers, just willing it to take away the pain.. which it never actually does.

So it got that bad by Sunday eve, that H & I made an 'emergency' appointment with Prof today. We saw him around noon and said how bad things are, and how goddamn worried we both are. I sat there looking and feeling like a bag of shit – he is desperately trying to 'solve' it but whatever the inflammation is, is just not his bag.

I actually asked him if this is how it feels when you start to die. When your organs conspire against you and everything just goes wrong, and a bit more wrong, one by one, till it overwhelms you and there's nothing you can do to fight against it any more. He couldn't really answer that one, but the fact that he didn't say 'don't be daft, we'll get this sorted' is also pretty telling. And it's a terrible feeling asking yourself that question, and just not know if I will come through this ok and be 'back to normal' later in the year, or if I'm just not facing up to what could just as easily be the terrible truth. Oh fucking hell. It could so easily go either way at this point in time.

So we carry on with this week's plan, all of which focuses on Friday's shoulder operation and getting hold of some bone tissue. This will be analysed and reported on next Tuesday (yes a whole 'nother week of feeling like shit). And hopefully, only hopefully, will something spring off the biopsy that will explain the whole body inflammation. Prof is convinced NONE of it is to do with the myeloma – not the sore back, heart, lungs, nothing. And reiterated that the only reason I am on chemo for the myeloma is because of the sternum tumour. So I am going through all the chemo treatment virtually for nothing, and the massive elephant in the room is what the hell is wrong with me besides the sodding myeloma.

And every scan report says that every pain is due to 'some underlying inflammatory condition', so this is the thing that needs to be hunted down and identified. But there are 100s of inflammatory conditions ranging from the big well known ones like Rheumatoid arthritis through to the very rare ones that are very hard to identify. So it'll be a miracle if some sod finally puts a name to this – and comes up with a treatment plan that actually works.. I wish.

I'm still very hopeful at this stage as a smidgen of hope is all I've got right now. Please, please, please let the bone have something really obvious in it – like a little red flag saying ' It's X disease!!' Linda even started saying something about sending me to the Hospital for Tropical Diseases – great, just because I've had the odd holiday in the past, now they think I've been bitten by a rabid spider and that's the cause?? I think not..

So this week, I've got a few cups of tea lined up with lovely people and am aiming to get to the theatre tomorrow night (Or is that 'tonight' now its 2am?) to see Beautiful, the Carole King musical. Janine & Ross are collecting me, driving me into town and will drop me at the theatre doors while they then park. This is a classic example of how much life has changed and how kind people are at doing anything they can to help get me out and about, or just to feel 'like me' for a couple of hours while I watch a musical.. God, I wish I didn't need any of it.

And in the meantime I'm having to say no to various things that we'd ordinarily love to say yes to – Cato's 40th party, Mark Warshaw's daughter's Bat Mitzvah meal, anything that is more than a week or so away, as I don't know from day to day what's going to be possible and what is pie in the sky.

Keep every finger crossed for a good outcome to Friday's op. Claire White pulled the short straw on coming with me to that one (she said yes before I got the admission letter saying be there at 6.45am!) so cheers for that one, old friend. I'd pack a good book and Friday's newspaper as the plan seems to be to do the op and then do the first chemo of Cycle 2 straight afterwards. This was meant to be on Thurs but the chemo drugs might skew the biopsy results so they have to go in this order now). What a fun Friday it will be.

I am looking forward to an unusual supper this week – nieces 1 & 2 (Jess and Grace) are coming over to cook fajitas for us, plus their Dad (my brother Richard). Really pleased that relationships with this side of the family are slowly building, after many years of being stuck in the doldrums. And I do love a pile of guacamole… 

Much kove to you all – and if anyone can help bring Option 1 at the top of this post, to the fore, then all prayers, good wishes etc very gratefully received x