Tagged Hematology

Cell-Bye Date (part II)

 

nolan

A stem cell transplant is supposed to save your life, but there are times when you don’t feel alive. First you’re hit with high-dose chemo and radiotherapy – total body irradiation, that is: lying in a kind of human fish tank while a machine shoots you with waves of 14.4 Grays. It’s like you’re a computer being fitted with a new hard drive; before they can install the healthy bone marrow, they want to demolish all trace of your own errant cells. The whole process, I’ve been told, inflicts the same kind of destruction on the body as a nuclear attack.

The first bombshell came for me, though, when the question of donors arose. My sister had already been tested and found incompatible (siblings are only a match in around 25% of cases).

Then came the uncertainty, and the sense of powerlessness, as the search for an unrelated donor began. All I could do was wait and hope that a match would be found. The consultant warned that it might not be possible due to my ‘mixed background.’

I’d never thought of myself as mixed, but it turns out that having a Jewish-Hungarian father and a Croatian mother is far from ideal. In fact, the chances of finding a match with a Jewish background, I recently discovered, are only around 40%. (‘As though being persecuted down the ages wasn’t enough,’ my dad lamented).

Donors are matched according to cell tissue, of which there are millions of different types. I was astonishingly lucky to be found a 10/10 match in a matter of weeks.

But not everyone is as fortunate as I was. Some people go for years enduring gruelling rounds of chemotherapy while they wait for a suitable donor to appear on the register. Others don’t survive.

The more people join the register, the better the chances of finding a match for everyone with a blood cancer. All it takes to sign up is a bit of saliva in a sample tube.

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.

Scratching on the blank slate

sepia

‘You know what you should do,’ the consultant haematologist smiled, ‘you should write a Blog.’ He looked very proud.

Of course I nodded gamely. No point arguing. The sun was shining, the registrars and nurses poised with their clipboards on the daily round, everyone beaming in my direction. The cheeriest chemo patient on the ward. (Or so I’ve been told. Unless they tell everyone that).

‘You could talk about your experiences with the treatment – you’d have so much to say.’ The registrars and nurses seemed to nod as one.

‘Great – I’ll do it,’ I probably said. I can’t remember. This was a couple of weeks ago. All I know is that I hadn’t the least intention of following his advice.

I couldn’t think of a worse idea.

I knew exactly what he was after – the confessional tone, the grimly ‘gritty’ subheadings. Losing my hair, losing my strength, my fertility – all the delicious side-effects which accompany a cocktail of drugs pumped through your veins.

Basically, the kind of self-aggrandising narrative that friends and relatives would dutifully read and comment and re-tweet, out of a dogged sympathy for my Resolute Bravery in the Face of Adversity.

Writing about leukaemia just seems like a cheap shot. Inevitably self-pitying, introspective – and somehow insufficient. Is a serious disease enough to turn you into a scintillating object of interest? Are you blog-worthy just because your bone marrow is misbehaving and your chromosomes are really messed up?

On top of that, my reservation with blogs has always been that it’s too late now and the only ones people actually read were all sparked off around a mythical golden age of the blogosphere explosion circa 2007.

On the other hand though, blog success is probably worse than failure. I’ve already received one or two saccharine messages praising my Inner Strength – and suddenly an email addressed ‘Dear Beautiful Hannah’ from a usually austere family friend got me a little bit scared. What next, a card from the Duchess of Cambridge telling me I’m an inspiration? (A teddy from Pippa?*)

But I’m getting ahead of myself. This is all specious, because here I am with my first blog entry.  After splotting out all these doubts and misgivings, why am I still writing?

*This bit is disingenuous. Nothing would make me happier.