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.

7 comments

  1. Barry Walsh says:

    Hannah,

    I hope that once you’ve given this wretched illness a good kicking you’ll continue writing; you’re clearly the real deal. Every good wish.

  2. Catherine Clarke says:

    Hannah,
    Met you briefly at your parents Christmas drinks party. I can assure you everyone here in Claremont are wishing the best for you. Hang in there. It’s all you can do.

  3. Carolien & Nicolas says:

    Dear Hannah,
    Thank you for sharing your experience with the world. Eszter always tells us about you and we are terribly sorry to hear that you are going through this horrible chemo-experience. We will check-up on your blog and cross our fingers for you,
    Best wishes from Holland, Carolien & Nicolas

  4. Ebru Ergen says:

    Hang in there Hannah! You are doing great.Stay strong my beautiful friend. Praying for you lots. Lots of love xxxxx

  5. Amalia Patane says:

    Ciao Hannah!
    Ti ricordi di me? Ho una foto bellissima con te e Rebecca al matrimonio dei tuoi.
    I tuoi genitori mi hanno informato della tua malattia.
    Mi dispiace, ma cerca di trovare la forza di superare questo momento difficile.
    Alla tua guarigione, puoi farti regalare un bellissimo viaggio in Italia!
    Peter mi ha detto che sei stata a Roma. Ti e’ piaciuta? Cosa hai apprezzato di piu’?
    Il cibo? i ragazzi italiani? i monumenti!
    Ti auguro une serena Pasqua in compagnia dei tuoi cari.
    Baci e abbracci!
    Amalia

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