Tagged cytogenetics

April 8, 2013

Well this is awkward…

‘“I can’t explain myself, I’m afraid, sir,” said Alice, “because I’m not myself, you see.”

“I don’t see,” said the Caterpillar.”’

– Lewis Carroll, Alice in Wonderland

Leukaemia, cancer; there are definitely many downsides.

The chemo makes you feel pretty grim. You’ve got a steady supply of poison being pumped through your veins. It kills off the malignant cells – or so you hope – and obliterates a good many healthy ones in its wake.

But if we leave aside all the physiological drama for a moment, all the aches and pains, the crippling nausea and the weakness, there’s one thing I really dread. To be honest, given the choice, I’d prefer an injection (a little subcutaneous one though, nothing overly invasive).

I’m referring to the moment of revelation. The bit where you have to tell someone for the first time.

It could be a close friend, it could be an old colleague. It could be the alumnae office from university, ringing up to see what you’re doing with your life. It’s always fraught with tension.

You do everything in your power to avoid the loaded silence. First you drop the bombshell, then you sense the utter panic on the other end of the phone; their brain goes into overdrive, ticking away furiously searching for the right words. You start talking and talking, you keep talking; you don’t let them get a word in edgeways. You’re trying to spare them the unease. It becomes a matter of boosting morale. You find yourself gushing about impressive remission statistics with all the aplomb of a failed head teacher boasting about exam grades.

When the numbers look good it gives you something to hide behind. It’s just a question of finding the right numbers. It’s not easy when there aren’t many to go on. There are only 28 recorded cases of my cytogenetic anomaly in the UK. Sixteen of them, I was told in the vaguest terms, responded to treatment. I don’t know what happened to the other 12.

But nothing stands in my way. I’ll do anything to avoid the shocked pause. On more than one occasion, I’ve found myself spinning out stories and statistics, ending the conversation with the conclusion that, really, I’m incredibly fortunate – in fact, more than that, I’m actually ingenious; I’ve somehow managed to contract the best, most treatable disease in existence, in all the ideal circumstances, surrounded by the greatest support and finest medical facilities possible. And it’s perfect timing as well. (‘Imagine if I’d been born a few decades earlier! I wouldn’t stand a chance!’)

But if it’s hard for me, it must be much more difficult for the other person to find the right thing to say. And there is no right thing to say. There are plenty of wrong things. I have some stunning examples.

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.