Wednesday, 20 March 2013


If I could do it again, I'd make more mistakes, I'd not be so scared of falling. If I could do it again, I'd climb more trees, I'd pick and eat more wild blackberries
Waiting for the 7:18 - Bloc Party

Day 13 : ... Haemoglobin 7.7 ... Neutrophils 0.10 ... Platelets 20 ...

As I hoped yesterday, my neutrophil count is increasing more quickly - it has doubled in the last 24 hours. If they continue to multiply (and they very well might) then I'll reach the magic threshold of 1.0 this weekend, at which point I could go home. I might even hit 0.5 as early as Friday, at which point I'd be allowed out of my room - I've been out just once (to go for an x-ray) in the last 8 days. For now, though, I continue to have very little immunity, and no freedom.

The fact that I can produce blood cells means that my clever little stem cells have successfully crossed from my blood back in to my bones, where they are recolonising as new bone marrow and starting work. (All their predecessors, along with my myeloma, having been bleached by the chemo.) It's not bad really, 2 weeks for a body to begin to regenerate some of its deepest functions. We're pretty amazing, you and me.

Other good things are happening. We've stopped worrying about my fluid intake/output - so I can use the toilet like a normal person. And my appetite is returning, though I look forward to them stopping my antibiotics, which continue to ruin my sense of taste. (They had promised we might stop today, but my temperature went up to a dizzying 37.8C last night, which is apparently enough to condemn me to another day or two of metal-mouth.) I'm even regaining body odour - which you might not think you'd miss, but I can report from experience, it's unsettling to be without it.

There's still plenty to deal with, though. I feel very lightheaded and feeble. I receive a couple of units of blood today to tide me over. The photo I'd rather have shown you - but I didn't think it fair to ask the nurse to pose for my blog - is of the machine they use to act as second checker. (Without it we would need two nurses to confirm everything is in order before we get started.) It has a handheld scanner with which the nurse scans their own ID, my wristband and the 2 barcodes on the blood bag. The scanner is attached to a machine on a shoulder strap that links wirelessly into the computer network to check we're all correct, and also prints out a receipt to confirm what we've done. The whole ensemble is reminiscent of either a door-to-door utilities salesperson, or a railways ticket inspector. I take the mickey out of the nurses, accordingly.

My hair is coming out. All of it. This includes 10 days worth of facial stubble, which is a really irritating sensation, and which will, left untended, look patchy and unsightly. But of course, with so few platelets I'm not even allowed to shave it off.

I'm not sure whether to feel really pleased with myself (keeping clean enough to avoid serious infection/ eating enough to maintain my weight/ keeping active) or whether to feel very lucky (haven't been dangerously ill/ haven't had uncontrollable diarrhoea and vomiting/ haven't been bed bound). Is this all a product of determination, good routines and physical resilience? Or good fortune? I ask the nurse. She says I should claim it as both. I reckon that's a good rule of thumb for all our successes in life.


  1. Sounding pretty good Alex, Hopefully you can return home very soon.
    Ii pass by your hospital on the bus every morning and send you a thought as I pass. I also read your blog everyday as I like to know how it's all going for you.
    We all spare a lot of thoughts for your family as well, and hope that they are all coping as well as you are. We did phone Marisa the other day to see how she and the boys were all doing.
    So keep those neutro's rising and hopefully we can see you very soon.
    Take care Alex
    Krow and Co.

  2. Thank you Alex for your very informative blog. I have just completed cycle 3 of the PADIMAC trial and am having a break due to Neuropathic pain from the Velcade. It is so helpful to read the very clear and honest descriptions of your treatment and the possible journey I have ahead of me. I am writing my own blog and find it very cathartic.
    I wish you well
    Deborah x

  3. Deborah - hang in there. Glad if my description is any use at all. Personally, I found PADIMAC got easier in the last couple of cycles, though we're all different. I'll check out your blog.