Prof Latest

So, back to the UK, and of course, back to the bloody Dark Side today.

What a reminder of how my treatment is so, so invasive and annoying. (Yes necessary, yes life extending, but still yes, a right pain in the arse).

Waited almost 2 hours from arrival and having cannula put in to see Prof. Quick discussion about starting the second drug, Velcade, from today. Confusing as to whether this would be given on Day 1 of the monthly cycle then two out of days 4, 8 and 11, or on Day 1, plus days 8 and 15. You’d really think they’d know or be better than me at working it out by now… Any clues as to when I’m meant to turn up there, really are quite helpful….

But the new addition is generally a shag as it seems it is the latter of these, which means going for bloods 3 out of 4 weeks each month on a Monday then having the Velcade on three out of the 4  Tuesdays. With one brief week of peace between cycles. A 30 second injection that will still take, as per the nurse’s estimate, 1-2 hours each time I go, by the time they book me in, call Pharmacy etc etc even if I do get the bloods out of the way the day before. And as they don’t open till 9.30am it’s basically a half day a week eaten up just by the jab alone, plus the bloods pre-visit each time, plus the Dara day itself.

So much for being able to compartmentalise treatment and pretend life is normal-ish, on this regimen it never will be. I can move the actual day if something better comes up but it still has to be done, week in, week out. Phlurgh.

And then one of those Parkside side-comments-that’s-actually-a-bit-of-a-bombshell got dropped.

I was making conversation with the Male nurse who was adding something to my IV, and asked him why paracetamol is given before the Dara. His answer to that made sense, but then he added, ‘of course it’s a shame that everyone had such hopes for Dara but now it’s stopping working for patients’. What??!!

First I’ve heard of it, it’s still being given, and publicised as a new treatment for certain NHS patients as if It is a wonder drug. Tried to get hold of Prof’s PA to ask about this, but she’d gone. Hopefully will find out more tomorrow when we speak.

So if you add all this up, plus Prof saying he wants another bone marrow biopsy in the next month or two, and that if the newish pain in my back (excess weight from Spanish overindulgence? Sore from uncomfy Spain bed for a month? Or another problem in the making? Who knows….) will need an MRI if it doesn’t improve, I felt more than a bit harrumph by the time I finally escaped today.

Got there at 10am and left at 5.15pm having asked them to end the treatment 10 mins early, as I’d just had enough for one day. The main nurse actually said ‘I’ll have to put it in your notes’ like I should be worried. And there was me thinking I wasn’t at school any more….

Hopefully Dara may be working for me as it’s showing up in my bloods – but this might well not be how it’s efficacy is measured. Will find out more.

In the meantime, I’ll be seeing more of the Dark Side than I thought 2018 might bring. Pooooooooooo x

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