Tagged Leukemia

Weapons of mass destruction

Nowadays they say they can kill all the cancer cells with chemo.

Then there are drugs for all the side-effects.

They can give you anti-sickness medication, in your mouth or your veins, plunging you into a three-day hangover; they can give you a different kind which demolishes your kidneys, or they can give you ones which sound like Dom Perignon, but they can’t do much about the odd feelings that remain.

When the nurse gave me cyclosine she said it might make me feel a bit light-headed. She didn’t tell me it would leave me pawing the bed in some kind of parody of Islamic prayer, or embarking on an orgiastic display of self-flagellation and paranoia.

I’d asked her for some anti-nausea medication, without anything in particular in mind.

‘Intravenous you want?’

(‘Clubcard?’ ‘Cashback?’ she might have said, just as casually.)

I hesitated. Was this the sort of decision that was allowed to be in my hands?

‘Sure.’

She asked if I’d tried cyclosine before. Not that I knew of, but then every morning at 6am they just used to give me a shot through the veins with a chirpy ‘anti-sickness!’ along with a staccato ‘antibiotics!’ and finally ‘time for the blood!’ I wasn’t really in a position to name names.

Suddenly my heart was racing; I was pounding on my mattress with the flats of both palms in some inexplicable liturgical dance. I started crying for the first time, properly, since the diagnosis, crying out that I used to be a good girl, I was a good girl before the leukaemia.

I started gabbling, apologising to the nurse for my parents – I’d worked hard at school, I was always good before – I was really sorry, I told her, to the nurses on the ward, the NHS, the hospital, I was very sorry, for the inconvenience, and not only that, I was sorry, I promised her – I’d always been good before this.

Then the hallucinations came. The ground was breathing, rising up and swelling. And the nightmares. (I was raped and assaulted in one, eaten alive by crocodiles in another).

You’d think it’s when they’re detonated that the weapons are at their deadliest. Actually it’s not. It’s when the prospect of them is looming, the anticipation building. The hovering just out of sight, the unknown danger which lies ahead.

And then the fear, in my case, that the weapons won’t be deployed fast enough.

So it happened with the L-pegylated asparaginase, a chemo drug that was meant to be injected in my back. Saddam Hussein, we were once told, could release weapons of mass destruction within 45 minutes. Asparaginase, like an explosive ticking time bomb, expires within half an hour. The nurse on duty didn’t realise until it was too late. The chemical was wasted. £1300 of NHS money down the drain.

The next day the lab didn’t get the product ready in time. My treatment was delayed by two days, with lots of um-ing and ah-ing and finger-pointing over the true culprit, and the doctor blaming the nurse for not reading the label*. Followed by an about-turn where we were told the 30 minute-window wasn’t in fact correct – or maybe it was – and all the hallmarks of a sexed-up dossier.

I was confused. I still am; I don’t know exactly what went on. 2 days doesn’t sound like a lot, but it feels far too long when the enemy is in sight.
IMG01040-20130313-1821

 

*I would like to add that the standard of care I have received at this hospital has generally been of a very high standard, and I I have been overwhelmed by the kindness, humanity and professionalism of the staff here, especially given the great challenges they face.

More on that in another entry though. For now, I’m just waiting on that package from the Middletons’ PR Office – where could it have got to?

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.