Tagged cake

Why me? Why not.

I’m writing because I have a white blood cell count of 0.

Because for a month now I have been confined to a sterilised room, and on the rare occasions I leave it I have to wear a mask, as the slightest cough of a passer-by could result in pneumonia for me.

Because for that same reason I’m scared to let my friends visit. Even my parents are terrified to touch me.

I’m writing because I feel weaker every day. I can’t walk a short distance without leaning on my dad; I have to lever myself up every time I crouch down to open a drawer.  After dimly imagining my hair might stay intact (I’ve been lucky so far) it’s now falling out in large handfuls. And I’m scared the ability to write, if I don’t, like so much else, will slip away from me.

I’m writing because now – as I’m loaded with drugs bearing oddly alluring names, which leave me barely able at times to remember my own – now is not the time to write and yet now is the time more than ever.

Because somewhere at the back of my mind, somewhere way beneath the why-me is the why-not; under the cheery post-chemo gleam is the unvoiceable, lingering sense that my time left to write isn’t as long as I would hope it to be.

Last week on the wards the new consultant hit me with it. He isn’t the most rhetorically-gifted man.

‘Well, this is something that looks like a Bad Thing,’ he said.

I wish, at least, he’d said ‘less promising’, or ‘less encouraging’, or ‘inauspicious’. Dress it up for me a bit, embellish round the edges.

After a lot of fumbling and prevarication – and a lot more repetition of ‘looks like a Bad Thing – but possibly isn’t!’ – it came down to this:

‘You have a cytogenetic abnormality. Your chromosome 21 makes too many copies of the AML1 gene. And while we don’t really have anything in the way of statistics – it looks like patients with your specific brand of leukaemia fare worse than others. So we’re giving you a higher dose of chemo just to make sure!’

I’m such a lucky girl.

I thought it was already rare enough for my white blood cells to go off on their merry way in the way they have – only 400 adults in the UK are diagnosed with ALL (acute lymphoblastic leukaemia) every year. But apparently my little chromosomic idiosyncrasy is limited to 4-5 in the country, according to the consultant. So it turns out I really am one in a million. (Or one in 15 million, if you want to split hairs).

And I have a pink lunchbox with my name on it. Well, it’s my drugs box, but it looks like a lunchbox, and it’s Alice-in-Wonderland-fallen-down-the-rabbit-hole-brilliant. HANNAH PARTOS stamped on one side in capitals and CYTOTOXIC!!! on the other.

I suppose it’ll have to do if that teddy from Pippa doesn’t arrive soon.