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

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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 a minor flirtation. 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. 16 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 slightly renegade 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. (Or as my mum puts it: ‘You’re so lucky, imagine if you’d been born 100 years ago. Or in a war zone. You wouldn’t stand a chance.’) Then I flutter on about the reputation of the haematology ward. The hospital? It’s basically a health spa – cooked meals, free foot massage (once-fortnightly, but still), a dietician, a hair specialist who comes in every Thursday.

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.

More on that next time.

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Out on good behaviour

So eventually the white blood cells did spring up to Alice-in-the-rabbit-hole proportions. 19.1 on Monday thanks to the injections (the normal human range is between 3 and 12.)

I felt like a prisoner escaping the hospital. I probably looked a bit shifty walking out of the room for the first time in six weeks without a surgical mask. I think I was half-expecting one of the nurses to run after me and stop me on my way.

Anyway, I’m only really out on parole – yesterday, after getting my blood taken and a dressing changed, I spent the entire day in hospital just waiting for this little lot to come up from the pharmacy:

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..and tomorrow I’m booked in for a bone marrow biopsy at the out-patients’ clinic, which feels a bit like having a medieval instrument drilled through your back, but should give some idea of what my cells have been up to.

I just need to remember to have all these before I go:

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The waiting game

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don’t do anything at all
Go ask Alice
When she’s ten feet tall

– Jefferson Airplane, White Rabbit

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My first round of chemo is over. I should be going home for at least a few days’ respite before I get the second batch.

Except I’m still here. In the same room that I was admitted to five weeks ago. At the moment I’m trapped in the looking glass, playing the waiting game. Waiting for the white blood cells and the neutrophils to get their skates on and move up a few notches.

The chemo killed off all the unruly cells, and left me with nothing for a while. As I was given such a high dose, they’re being a bit slow to recover.

I just wish they’d hurry up a bit. At the moment the old neutrophils seem to be oscillating between 0 and 0.1. They went up to 0.1 for a day, then back down to 0 the next. I need 0.5 before the powers-that-be can unleash me on all the glorious bacteria and infection of the outside world.

The consultant was typically benevolent on the wards round yesterday: ‘We may possibly consider letting you out at 0.4. If you’re practically climbing up the walls with frustration by that stage.’

Luckily there’s all the magic of wondrous pills and concoctions to help me on my way. The nurse on duty (one of my favourites) popped in yesterday brandishing a particularly large syringe.

‘You can either have it in your leg, your arm, or your tummy! Your choice.’

‘What is it?’ I asked.

‘Oh just the growth hormone injection! Haven’t they told you?’

As it turns out they hadn’t.

‘It just gives your bone marrow a good kick up the backside and a push to get moving and producing cells. Healthy cells! Now lean back and breathe out.’

Unlike Alice I didn’t cry. Nor did I end up over nine feet high, or collide with any ceilings. I just got quite a bit of pain in my lower back. Which means it’s working, apparently. The white blood cells were 0.3 today (up from 0.2 yesterday) and the neutrophils are back at 0.1.

So it’s just a matter of waiting now. It’s okay though, I’m sure they’ll be up soon (I hear Pippa’s praying for me.)

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.
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*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.

Scratching on the blank slate

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‘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.