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.

Thursday 3 September 2015


Oh, you miss me, our love's in stereo. Isn't it finer in mono?
Vertigo - Mini Mansions

Fear not! I'm back... And the weird world of post-SCT strikes again

We visited Switzerland during the summer, and did a couple of trips up mountains. The first one was by cable car, up Schilthorn (setting for On Her Majesty's Secret Service), which is a just under 3,000m above sea level.

After we'd been at the top about an hour, I developed a headache, which intensified viciously, until I was reduced to sitting, my head in my hands, feeling thoroughly light-headed and nauseous. Upon descending again, I was violently sick (sorry, good burghers of Mürren), after which I felt fine.

The symptoms were disturbingly like altitude sickness; not something I've ever suffered before - and I've travelled at much higher altitudes (5,000m in Bolivia and Peru). To be honest, I didn't think it was possible to get sick as low as 3,000m, but upon looking it up I discover it can happen from 2,500m, especially if you are anaemic. I'm not anaemic right now, but maybe my body is not able to adapt quickly enough, as it used to be? I know it is not as resilient, post-SCT, and I'm guessing this is just another ramification of that.

I'm used by now, to discovering weird symptoms of post-SCT life. Sometimes a quick bit of googling confirms others have experienced the same, but searching "altitude sickness stem cell transplant" has provided no such reassurance. But then, on other occasions I experience things and only discover the same in others much later. For example: 2 years ago, I observed melphalan damage in my nails - but only this week did I finally read other people reporting the same (it was a conversation on Facebook, so I can't give you a link).

Maybe someone reading this will be able to share a similar experience to mine? Or maybe I'll never know. Nothing surprises me, any more, so I'll happily place the blame on the SCT,

I was a little nervous about going up any more mountains. But decided I'd have another go (the alternative was to permanently restrict myself to living low!). The next occasion, up Jungfraujoch - a few hundred metres higher - was fine. Maybe a short shock had done my body some good.

It was certainly worth it.

Oh, you know, honey, get your loving on the low. Don't you know you give me vertigo?
Vertigo - Mini Mansions