Not to put too fine a point on it…. I had this all so beautifully worded as I lay awake at 2.30-5am last night, but here it comes in top of mind bluuuurgh format instead.
The good news – my PP has dropped below 2 for the first time since treatment started waaaaaaaaay back in bloody February. Yes, its almost 7 months of sodding chemo so far, but hey, who's counting??!!
It was 1.91 and is now 1.7, so that is a good sign that hopefully my new friend Dara the Wonder Drug may be working. Either that or my PP has got as bored and pissed off as I have and is bowing under my mental pressure for it to just sod off.
The other sort of good news bit is that I have received sign off for having Velcade (the other chemo drug, an injection) alongside Dara as the very few reports that exist on Dara so far (only been in clinical trials to date, no widespread usage apart from lucky sods like me with private healthcare who can then snaffle it first) say that having 2 drugs in combination is better than Dara alone. Which seems to be fairly standard practice in Myeloma care but you never know with Dara as its so new – and works in a different way – that it could be different. Anyway – had my first Velcade jab yesterday so the tummy bruising will be looking great by the time we get to Malta. Extra big bikini bottoms required…
The buggeration factor is that, having had what looked like a clear path ahead – Dara weekly for 8 weeks, then twice a month then once a month – and then into SCT in-between the monthly doses – got all messed up as Velcade runs on a 3 week cycle (oh of course it bloody had to!) so they were hugely confused about how to merge the two and when not only the main drug doses get given, but when and how much of all the peripheral shit (especially my old friend, steroids) have to be slotted in. Suffice it to say I've had 20mg of Dex this morning and look like a red monster.
And of course, a Dara dose is now due slap bang in the middle of our carefully planned holiday – but we will just have to manage around it.
What is less clear is when the 3 weekly cycles may (or may not) morph into Dara being monthly – and the transplant being scheduled.
H bumped into Ray at CCL yesterday while I was plugged in for my 7 hour joyfest, and he seemed to think this may or may not be needed (having said most recently that it definitely would be) and that January may or may not be the time. Well thanks for the clarity. I am desperate to get it done as soon as possible – and Jan would be the best time in my book, so I can grow my hair back, get back to strength and hopefully get my sodding life back this side of the middle of next year.
I am SO struggling with the endless relentless nature of this beast, which seems to shape-shift on a daily bloody basis. It's hard enough to sit here in August, thinking the earliest I would be out of hospital might be Feb 2017 – 5-6 months from now, having been on treatment nearly all year already, and in pretty crap health for 2 years now.
Sucking it up as best I can but god I want a normal life. It impinges on everything – every time I see another smug 'we've just done our 10th triathlon' or 'here's our lovely healthy family with everything to look forward to in the future' photo on Facebook, I try my best to be pleased for the people posting but it kills me inside. Every time I meet a new consultant my well-practised spiel starts with 'well, I was normal till I was 39, then it all went rather wrong…'. And now that I am about to turn 48 – which, don't get me wrong, I am immensely grateful for, as so many of my MM friends are no longer here for their own birthdays, families and living their lives – but it's still horribly tough being so different to everyone else. And to know that it will never change.
Even the second opinion breathing guy – whoo seems very smart – couldn't find anything specific when he did my third (yes, third!) right heart catheterisation procedure at the grim Hammersmith Hospital last Friday. So as ever, there is the good news that there is no one major thing wrong causing my breathing issues – but still nothing at all that anyone seems able to put a finger on. And – oh surprise me – he doesn't think I have pulmonary hypertension! Well, no shit Sherlock – I've been saying that since day one. Any chance I can come off the extra 21 tablets a week this means I have to have and the 14 lots of sucking on useless inhalers??!! He did very politely say that it may be the drugs that have reduced my scores to the point of PH not being traceable (a politically sensitive way of not dissing the primary lung consultant who put me on it all in the first place. I do have a lot of respect for her, but when nothing improves after 6 months, you have to moooooooove on.
So here we are – having Dara every Tues at CCL (all visitors welcome even for an hour or two, I am bored titless). And then Velcade on dates I cannot even fathom as yet. And some new thing is to be added in that I have to go onto the ward to have monthly, but that should only take an hour or two. And the monthly Zometa dose to reduce bone crumbling. Ah yes, it goes on – and on. And bloody On. Have been chatting to Abbie, a friend of a friend of Liz T's who is often at CCL on a Tues as well – rolling of mutual eyes does help a bit. But it's frigging endless. Rachel McDowell is – impressively – schlepping all the way down from Manchester on Tues 6th to keep me company for the day, having taken a hockey ball to the head and having got 6 months worth of concussion that last time she was due down. Ah the lengths people will go to to avoid those visitor chairs….
Right, enough waffle. All I really want is some kind of plan to get the SCT done in Jan, so I have a chance of a decent 2017. And that it might just improve the breathing as now all they can say is 'it might be cellular' – i.e. no bloody idea, but if you get 'reset' during transplant, who knows if your cells will behave better afterwards.
Will keep you informed – as god knows, the story changes often enough! Sx
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