That is a bloody huge question, it has to be said.
Am in total medical turmoil at the moment – now, how to boil down the last 8 months of doctorly bollocks into a pithy blog entry? Here goes:
- I've had all over body pain including a weird pain in my upper arm bones, particularly at night, for about 8 months
- This has been half diagnosed as polymyalgia (all over body pain, so yes that was credible – and my bloody idea in the first place)
- had some steroids and initial results were good – got more movement back and could actually lift my arms above my head for a while – quite handy when trying to put clothes on, so you'll find
- Then I had some scans on my wrist when it did;t mend well after the carpal tunnel surgery, to be told that I have arthritis in both wrists and probably the shoulder area too. Great, now I am officially arthritic – although they could;t put a name on what type of arthritis so it remains 'undifferentiated' – as usual, I have something crappy, but no-one is quite sure what the hell it is
- Then the steroids stopped working and about 3-4 months ago a whacking pain moved in, right around my central sternum – if you put your finger on your chest where your boobs come together (cup size C and above only I reckon), then you're on the right area
- This has lead to me being unable – or finding it very difficult – to do any bending or twisting actions, from putting my car seat belt on, to tying my shoe laces. And don't even mention hiccoughing – that's a very bad idea.
- Couple this with the newer hassle – also about 4-6 months now, of the breathing issues. Have been increasingly unable to walk very far or do any slight activity – right down to walking the dog or packing up a cottage in a hurry (e.g. New Year's Day – sorry Clare Greenwood that you had to do all the washing up). All quite tricky as the heart issue is bang in the same space as the chest pain issue, the only difference being that I have chest pain all the time but the heart stuff only kicks in when I move faster than a slug (a rare occurrence over the past 8 months and a total non-bonus for my weight, sigh). Used to exercise 2-3 times a week and now it is - a pipe dream. You have no idea how lovely the idea of a rainy, muddy dog walk is, when you suddenly lose the ability to do it any more.
- Have seen 3 heart and lung consultants – no, make that 4 including the bike test guy – and the current one (Prof Kaski at St George's) packed me off with much stronger heart drugs, the patches and the spray before Christmas. What a god send I thought – but sadly, like every other sodding drug I am shovelling in – a fabulous 54 tablets a week at the moment – they haven't (as yet) worked at all.
- So I rang Prof Powles, mr oncology, over Twixmas to say that the chest issue was really worrying me (he's known about it for months, but said it was a Hugh thing) – and I asked him to refer me for a chest scan. Somehow all the shoulder, lung etc scans have managed to miss the actual space where it hurts – no, you could;t bloody make it up.
- And off to the CT I duly went this week.
- Yesterday, went back to see the Rheumatologist, Hugh Jones. Having had an email from prof's PA overnight also asking me to come see him straight afterwards to discuss the CT results. Call me a worry-wort but well, that's never good is it?
- So saw Hugh – and ended up having 2 injections into my sternum and one into each shoulder as a last ditch effort to see if anything he could offer could help with the upper body and chest pain. This will take at least 3 days to kick in so I'm still – as ever – vaguely hopeful.
- But then also saw Prof – the most confusing appointment ever, where despite him saying that if I were to go back onto myeloma treatment it might not cure the core pain, that the likely situation is going to be that I have increasing bone damage from the myeloma and that is what is causing the chest pain. So that would mean starting treatment now for 4-5 months – aiming towards me having a second stem cell transplant in c June this year.
You could have knocked me down with a feather. WHAT THE FUCK????
I mention bone pain for months and there's not a hint of interest from him. And my myeloma PP scores have been beautifully low and stable for years now, so not a sniff of even being close to any action required – and then suddenly it's 'one dodgy scan, welcome to 2016 and let's get you on underway for your second transplant????!!!'
So here I am today, waiting to see him again today. Talk about visions of the fucking grim reaper in the corner of my office. He wants to check how much bone damage has happened by comparing old CT scans with this new one.
And today we go to hear the answer and discuss next steps.
I just did not see this one coming – and while there is a chance there hasn't been any bone damage, the ongoing pain in my chest is rather strongly suggesting there has been.
I am desperate to not go back onto treatment – and he has a total one track mind that it is the only way forward. That's going to be an interesting stymie at 11.30am, hey?
And I need to find out if the original 'rule' around transplants still holds true – that you can probably only have 2, and that you tend to get 1/2 the remission from the second one as you did from the first, assuming all goes well. So that'd give me about 3 ish years.
Fuck, fucking fuck.
Not to mention the trips that I had lined up for the first half of the year – I never look too far ahead for obvious reasons, any more – but thought these would be safe.
- The Caribbean in Feb with Janine & Ross
- Ethiopia in April with Fitz & Lyds
- Our wedding anniversary in Rome, in May
- Pam's 50th birthday in Majorca, in June, with a bunch of folks
- Miami & Dollywood in June with Janine…
HATE the thought that things may get disrupted and I will let people down because of this total crock of shit.
So that's a pile of cherry pooh on top of the myeloma cake.
Anyway – there's still a small chance I can swing this in my favour today or the coming weeks while we work out a plan. Although I feel a tad like David with Goliath giving me a pitying stare right now..
Will let you know.
Phlurrrgggh.
S x