Friday, 26 May 2017


Think of all the roads; think of all their crossings.  Taking steps is easy; standing still is hard. Remember all their faces; remember all their voices. Everything is different, the second time around.
You've Got Time - Regina Spektor (theme from Orange Is The New Black)

KFLC >600 ... Hb = 11.5 ... mood = low

I'll save us all the witty chat. Today's appointment is mercifully punctual and brief. Those are its redeeming features. The little plateau on which I have been resting, precariously, for a while, seems to be at an end. My light chains have jumped 50% in the last 2 months. In theory, this is all irrelevant because clinical symptoms - of which I have none - are the only sure basis on which treatment decisions will be made.


My haemoglobin levels are dropping. Nothing dangerous yet, but there's only one direction of travel. If they continue the way they are going, anaemia will become a clinical symptom in its own right. And anyway, the doctor is increasingly concerned about the light chains themselves and the risk they pose to my kidneys. My kidney function is fine - as it has always been - but it's really not something where you want to wait until the damage has been done.

So, my springtime of skipped appointments and long intervals is abruptly over. I'm back on a 4 week review cycle. If my light chains do again in the next couple of months what they've done in the last couple, it will be time to begin planning my return into chemo. Maybe I'll string it out another month or two. Maybe.

For reasons it's not appropriate to dwell on here, I've spent a bit of time this week revisiting the process of diagnosis, and the terror and confusion that went with it. It's very different second time around. No confusion. Less terror. More dread.