Tagged leukaemia

Cell-Bye Date (part I)

Elizabeth I

Elizabeth I famously claimed to have the heart and stomach of a man.

I don’t have the Spanish Armada to contend with, but I do have a brand-new male bone marrow, courtesy of a 24 year-old ‘chunky lad’ who was generous enough to give away six million of his cells to a complete stranger.

Beyond his age and his robust stature, I haven’t been told anything about my donor. I’ve never met him, and in all likelihood, I’ll probably never get the chance. And yet he may well have saved my life. Although I went into remission after the first cycle of chemotherapy, the doctors warned me that without a stem cell transplant, there was a 60% chance of the leukaemia returning with a vengeance – more aggressive and less treatable.

But that’s not to say it’s been an easy ride. As the consultant, world-weary, opined today: ‘You didn’t have to go and develop all the complications we told you about. The booklet was just to scare you. There’s no need to suffer from every single side effect.’

‘I haven’t,’ I countered. ‘I mean, death, for one. I’m still alive, so far.’

On the consent form I had to sign before the treatment, the transplant coordinator had saved the word until last on the list, under ‘Serious or frequently occurring risks’.

‘Some patients don’t want to know their chances, some want a percentage,’ she’d told me hurriedly. She didn’t wait for a reply. ‘You’re young. I’d say there’s only a 10-12% mortality risk in your case.’

Stem cells are so often talked about these days in tones of mystified awe, and they’re fast becoming seen as a magical panacea for all manner of diseases and conditions. But I think it’s fair to say that many of us – including myself, pre-leukaemia – have a pretty hazy idea of what a bone marrow or stem cell transplant actually involves, including all the struggles along the way.

Aside from the agonising wait for a suitable donor, the sheer force of the treatment itself is beyond anything I could have imagined. Or, as my consultant remarked with a smile, when I enquired about the radiotherapy: ‘We use a dose that is lethal. In military terms, it’s very close to the atomic bomb.’

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?

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.