Thursday, 20 September 2018

Epilogue ten

I think I have the best of me inside my head. No one else competes with me, I think I'm great
Eat My Dust You Insensitive Fuck - The Catherine Wheel

Enough of all this chit, Alex, how are you, exactly?

If you've waded through this far, you really must be keen to know how I am?

I finished my chemo two weeks ago and am feeling better by the day. Though my back is still sore a lot of the time.

My light chains were, last seen, around 300, which is a partial response, not a fantastic one. But good enough.

This treatment regime has been hard. As I have emerged from it, since I stopped taking the drugs, I’ve been surprised by the change. I didn’t realise quite how much it was affecting me. In particular I think the thalidomide has been really gruelling for me and I am glad I will not have to take it again. It has made pretty much everything more challenging/draining and less rewarding/enjoyable.

Unless there's a real change of plan, I am due to start the stem cell harvest mobilisation process on 28th Sept, and complete the harvest apheresis by 9th Oct. The transplant itself is provisionally due to begin on 29th Oct. Depending on the regime (which arm of the clinical trial I am randomised in to), the transplant process will take 3 or 6 days from end to end. And then there’s just the recovery; which is the difficult bit (!); and which will take months.

I will be fitted with a PICC line in preparation for the transplant (though the actual stem cells will not be administered that way). My hospital no longer routinely fits Hickman lines for SCT, as they did previously.

(Plans could change if I were deemed not sufficiently healthy to transplant, or if a significant area of stubbornly refractory myeloma was identified such that we could not class my situation as remission. But neither of those circumstances is likely.)

After the transplant, I will be out of action for most of the rest of the year - for a good chunk of it isolated either in hospital or at home. I may begin the transplant process as an “ambulatory” patient; spending my days in hospital but my nights at home. Once my immune system has been completely surpressed, I will certainly spend the subsequent two weeks isolated in hospital. After that, I will be recuperating again at home.

We are continuing to investigate the condition of my rib cage, to try to explain why I have such recurrences of pain there.

TImage result for that's all folks

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