Friday 5 September 2014


We want to be free. We want to be free to do what we want to do. And we want to get loaded. And we want to have a good time
Loaded - Primal Scream (feat. Peter Fonda)

Checkup... KFLC=69...

Summer en Sussex. I spent a lot more time with the children than I did working, apart from two trips to New York. It was very good. We braved the sea. We visited local fairs and festivals. We ate a lot of pub lunches. We walked some truly beautiful woodland and countryside. East Sussex is a gem. We are so lucky to have a piece of it. Only when the blue skies turned to grey did we head back to London.

Now autumn is coming, I'm overseeing the building work on the house. It will, eventually, be amazing. I get to have some very Grand Designs conversations with glass suppliers and kitchen designers. And standing on our roof, surrounded by scaffolding and power tools is exhilarating - as is the steel frame in the garden, which currently resembles some kind of industrial homage to a minor Greek temple. In the short term though, it is quite messy, and occasionally stressful.

It's not exactly a routine, but maybe I'm destined never to have a routine any more. It is only natural to crave routine, though I suspect life is actually more fun without one.

I don't go to myelomaville much, right now. I'd like to say I never visit, but that would be a lie. I still go online and read stuff. Maybe I should stop? But occasionally, I stumble across something pertinent. Recently I read something which shed a little light on a contradiction that has puzzled me for some time. The conundrum is this: cytogenetic tests classify my myeloma as high risk (del17p). Simultaneously, my beta-2 microglobulin levels classify it as low risk. What does that mean? I now understand a little better (if you are interested...)

The specific high risk chromosome damage in my myeloma's DNA means it is missing the gene (TP53) for a protein that provides an error-checking function in cell division (when it finds errors it triggers the cell to die). DNA replication is complex and prone to errors. Cells with faulty DNA are liable to go rogue (be cancerous). Over time, cancer cell colonies get more mutations and so become more problematic. With the error-checker out of action, each replication is more risky. My myeloma dice are more loaded than average.

Meanwhile, beta-2 microglobulin indicates for speed of replication. My low levels show my myeloma grows slowly (right now). My dice may be loaded, but they get thrown relatively infrequently. So I really am simultaneously at high and low risk. I may, with luck, get very long remissions. When I relapse, it probably won't be very pleasantly (but then, we kind of knew that much already).

This month's light chain score is up to 69. That is higher than for most of the last year, but still within the parameters of meaninglessness. So we will continue to monitor it, as we must always do. Rational-Alex understands that. Emotional-Alex finds it a little more tricky. Fortunately I am, on balance, quite a rational person. Though I worry that I'm gradually suppressing Emotional-Alex, and I don't know if that changes who I am.

I wait 4 days between having my blood taken and getting the test result. Tick tock. Some people describe feeling quite anxious in the days before clinic. I can usually ignore it... But then I have to sit with the doctor and answer all the questions. Have I had any fever? Am I losing my sense of touch? Am I in pain? Are my bowels ok? Am I coping mentally? No/no/no/yes/ and "I guess so". Much of the rest of the time, I am a happy, grounded, person. But at these moments I yearn, viscerally, to be free.