Monday 27 January 2014


I've seen the needle and the damage done. A little part of it in everyone. Every junkie's like a setting sun.
The Needle And The Damage Done - Neil Young

A few little jabs that's all

To the GP this week, to get vaccinations up to date for holidays. I have to start from scratch, because there's no way of knowing (without doing loads more tests) which of my immunities have survived my SCT. So I have polio, diphtheria and tetanus today as well as typhoid and hepatitis. The nurse says do I want them in different arms. I can't be bothered to roll my other sleeve up so I say stick them all in one. She says it might hurt. lol.

Friday 24 January 2014


I'm wasting my young years. It doesn't matter. I'm chasing old ideas. It doesn't matter
Wasting My Young Years - London Grammar

Check up (from 10th Jan tests): ... Haemoglobin 12.4 ... Neutrophils 2.26 ... Platelets 176 ... Kappa FLCs 61 ...

My scores. Blood count normal, normal and normal. Even my lymphocytes (0.86 and counting) are getting more normal. (The lack of them was what sent me scurrying to hospital when I got a fever last month.)

And my light chains are actually DOWN. I was beginning to get used to them creeping up.... 62... 65... 69 in previous tests. Changes at this level are meaningless (number too volatile, test too sensitive), but even so I imagined a trend where I would very slowly emerge from remission. But no.

I think these are the best results I've ever had.

I was so pumped up, I decided today was the day to go for a run. Only a mile and a half. But crucially, I was not in pain. That's my first run for 98 weeks, since the time I broke my back. A really quite significant mile stone, then and now.

Tuesday 21 January 2014


There's a world within me that I cannot explain. Many rooms to explore, but the doors look the same. I am lost. I can't even remember my name
Within - Daft Punk

T is for tree, of course

I went to Bedgebury Pinetum on Saturday, with friends. While the children foraged for stick-men, my mind kept drawing me backwards.

I've been there just once before, 74 weeks previously, on 19th August 2012. The previous occasion was at the end of my first week of chemo, and at the height of the symptoms of my myeloma. It was probably the lowest moment of my life.

We had gone for a weekend away taking our bicycles with us. But I was in no fit state to hold a bike, let alone ride one. I could barely walk. Marisa, reading this, will feel bad that we went away that weekend at all. You shouldn't, honey. The intention was right. The children enjoyed it. I'm glad we went. I was destined to feel dreadful, wherever I was.

What surprised me last weekend – apart from an unwelcome sense of "nostalgia" (if it can be called that), was quite how vague my memories of the place were. It was only when I saw it again that I had any real recollections at all. In some respects the summer and autumn of 2012 is still very vivid for me. But in other ways, fortunately, it is remarkably hazy.

Friday 10 January 2014


You're down on your knees, begging us please, praying that we don't exist. We exist.
We exist - Arcade Fire

I decided this topic was better handled as a "pre" rather than a "post"

One of my myeloma buddies asked a question online the other day. She was diagnosed within weeks of when I was, is on the same clinical trial as me, and was one of the first few people who I ever communicated with that also has MM. As fellow travellers, I suggested we catch up for coffee.

This has since morphed into about 10 people, all of whom I know only online, meeting up this afternoon. Pity anyone sitting near us in the pub (we're so English), because the conversation will probably get a bit graphic.

Anyway, I don't think anything they tell me will be stuff I'll want to share with you. So I thought I'd write it up before it happens.

What is more worthy of note on DialM is that I've only ever spoken face to face with 3 people who have MM. And two of those only brief one-off encounters. I spoke to a couple more people on the phone, but that's it. So today will be something of a milestone. And all "under 50s" too. Myeloma at my age is a pretty lonely experience. Less so today.

In other news...

Lots of non-myeloma things have happened. I managed to enjoy the children's school Christmas performance and keep all the awful thoughts of mortality at bay. And not many myeloma things have happened. My most recent bone-drug appointment got delayed (off to the hospital in a few minutes). I've postponed my clinic visit for a few weeks. My brilliant physio is working wonders on me. I can stand with my back against a wall and touch my head against the wall (just).

I had my first haircut for a year and a half (excluding a few head-shaves and one fluff-trim last autumn).

I do realise that me posting a mirror-image selfie puts me in a peer group with Kim Kardashian, but I can't help that. And you wouldn't want to see my arse (you probably don't want to see hers) so at least I've kept it to a head shot. Look at all those neatly trimmed hairs. And not a chemo-wave in sight.