Tuesday, 29 September 2015

Reality bites

Can you feel it, see it, hear it today? If you can't then it doesn't matter anyway
Epic - Faith No More

Check up ... KFLC = 135 ...

I was more apprehensive than normal about this month's visit to the haematology clinic. Either my results would have returned to "normal", or they would not.

I was right to be worried, unfortunately. My light chains are rising. My consultant warns me that I should expect that my next appointment will formally mark "progression". As recently as July I was predicting that
"my myeloma will probably be back somewhere between 1 and 3 years from now".
It appears that it will be very much at the early end of that estimate.

Progression will not immediately mean treatment. For that, I get the joy of waiting for symptoms (bone pain, most likely, or anaemia). But I'm now assuming that I will be back in treatment during 2016. This will likely take the form of either ongoing (indefinite) chemo, or another stem cell transplant. I absorb all this information feeling very glum, and walk home feeling incredibly alone.

Then I have the task of passing on the news - first to my Dad, who is looking after Lyndon for the day, and then to Marisa. As always, sharing the news is my least favourite job of all. The lowest and worst part of the whole experience, when I face up to the fact that my illness impacts many people. Writing it down for you is comparatively easy - though it has taken me 10 days to pluck up the courage.

5 comments:

  1. So sorry to hear that Alex. Mean every word even though the phrase is so hackneyed.

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  2. Sorry to hear your news. The relapse/progression conversation is what we all dread. Best wishes for the next stage of treatment.

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  3. While it is not easy to process this news, take heart in the fact that the treatment protocols are increasing at a breakneck pace. I hope and expect that you'll find the right one, should it become necessary. Have you been on any maintenance protocol?

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  4. Sorry to hear your news Alex, as you said to my disappointing news, it's poo. Hope those light chains rise very slowly and you don't have to start treatment for a long time.

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  5. Alex this sucks and the first relapse after the SCT is very difficult to process for all sorts of reasons. You'll either be offered another SCT or Revlimid I imagine. Thinking of you and anything I can do let me know.

    Tom

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