Cell-Bye Date (part III)

Robert Graves

‘…The unendurable moment struck –

The inward scream, the duty to run mad.’

- Robert Graves, Recalling War

possible2‘”I’ve had such a curious dream!” said Alice, and she told her sister, as well as she could remember them, all these strange Adventures of hers.’

 - Lewis Carroll, Alice in Wonderland

 

They called it shell-shock in the First World War. At first the doctors were puzzled; these were men who were alive – they had survived, left the Front for good, come back as heroes. And still they were paralysed by fear; stammering, unable to speak. Many of them had suffered no injury to the brain, yet they had the kind of symptoms which accompany a wound to the head: dizziness, hearing voices, trembling. Memory loss.

I’ve mentioned the dangers of a transplant. I’ve said how the conditioning treatment – the high-dose chemo and the radiation they give you first, to delete your own stem cells and make way for the donor’s – inflicts a similar kind of devastation to the organs as chemical warfare, as nuclear radiation. Chemotherapy was, incidentally, conceived in the wake of the First World War, when veterans were found to have reduced bone marrows and lymph nodes after exposure to mustard gas.

I went into the transplant with the grim determination of a young conscript. I knew it could kill me. I knew that patients were frequently rushed to intensive care. I knew, as well, that there was no alternative. I signed the consent form.

I managed to develop all the complications I’d heard about, and a few more besides. I contracted a form of pneumonia, which left me feverish, with a violent cough. My liver started failing. My heart rate ran dangerously high, my blood pressure rocketed. Then the Graft-versus-Host-Disease set in; as the donor’s cells recognised my own as foreign, they began to attack – my skin flared up and I suffered a bout of gastro-enteritis.

Worst of all was the mucositis. I had been warned about it beforehand. The mucous membrane, from the oral cavity to the entire digestive system, becomes inflamed; the tongue swells up and develops painful ulcers, the gums bleed.

But nothing could have prepared me for the nightmare which spiralled into each oncoming day, or the ghost train ride which arrived in the evenings, without fail, and shuttled along every night.

At first you notice a slight soreness in your throat, the pills refuse to go down. Then it becomes impossible to eat or drink. A small sip of water is unbearable. Even swallowing your own saliva delivers a jolt of agony. Most patients are fed through a tube in their nose; for some reason, the nurses didn’t manage to fit one through mine, so all my medications, my daily calories and nutrition were transfused through my Hickman line, the rubber tube which had been inserted into a vein under my collar bone.

The pain is like nothing I’ve ever experienced. At night I was lucky if I slept half an hour. I would try to sleep sitting up; my air-ways were so constricted that I struggled to breathe when I lay down, spluttering and coughing. My oxygen levels would drop and the nurses would fit me with a mask.

I used to start retching uncontrollably, nauseated and overwhelmed with hunger pangs. I was starving, I was parched with thirst. But I was unable to ingest anything. For more than two weeks I could not brush my teeth. I could not speak. I could barely move my lips more than a couple of millimetres. I filled three whole notebooks and masses of pages of Word documents on my laptop, as I had to communicate somehow with the doctors and nurses, with my parents.

I read them over now; it’s like seeing the words of another person. Usually I remember everything; details of a conversation I had with a friend years ago. The first time I looked back over the pages of my own handwriting, from just a month earlier, I didn’t recognise them at all. There are the parts that seem plausible enough, that I can imagine having written – the requests for ice cubes to numb the aching, for anti-nausea injections in my stomach, for the nurses to increase my morphine dose – I was connected to an intravenous drip at all hours to reduce the pain, unplugged only for a few minutes each day to have a shower.

Then there is the odd sentence which seems to come, out of nowhere, and I don’t know whether to laugh, or gasp, or how to breathe, because this was a few months ago only, and the words are mine;  I know and I can’t, still, place them in my mind’s eye, I can’t see them as anything other than the progeny of a sick joke, some kind of hyperbolic underworld.

‘I’m scared,’ I had written to my dad, at one point. ‘Don’t let them lie to me. Am I getting near the end?’

3 thoughts on “Cell-Bye Date (part III)

  1. You’re making thru with grit by the bucket-load.
    My father went to war at a very young age, and was one of the few unfortunates to be in 5 biggies – including Casino, the desert, Dunkirk etc, in one battle his own side gave up on him.
    When it was all over he put it all behind, simply wanting to get on with living, and with life, He was rarely haunted by fractured memories, but was fortified by amazing resilience and energy. I sense you’re destiny is to be similarly rewarded and recompensed. xx An Admirer

  2. Dear Hannah,

    I was hesitant about clicking the ‘Like’ button for a post about your getting hit hard with pretty much all the side-effects available during your transplant, but the honesty of your account persuaded me that it was justified.

    I’m aiming for a bone marrow transplant myself, and am under no illusions about the risks and side-effects; it’s a boost, though, to see you (and others) getting to the point of being able to write about the experience – and so well.

    I, too, read French (and Italian) at Oxford – I was up from 2001 to 2005. I was diagnosed a few months after finishing Finals, and after a long treatment period (mostly chemotherapy; no BMT) went out into the world to enjoy six or seven fabulous years before the beast re-emerged a month or so ago.

    Good luck with your continuing recovery; I’ll be reading your blog.

    All the best,
    George

  3. Well done – and I can totally empathise. I had my BMT back in January 1998, and as you say “they take you to the brink” – your description of the mouth and GTI is very accurate from my memory. I know I *should’ve* cleaned my teeth every day – but didn’t.

    I was given a cocaine mouthwash. But during those long hours at night when I didn’t actually sleep, wired up to morphine & with drugs going thru on 2 machines (my whole transplant was done on venflons in the hands – my hickman line – and picc lines – failed within 48 hours – so no food for me for 3 weeks – not that I wanted any – though the tube in the nose might have been an idea!).

    But the cocaine co-incincided with some hallucinations that I can’t repeat online (only my wife knows some of what I imagined – and even then, not the goriest most personal details). So I asked to come off it. I know now that is was the Morphine (having been on it since for another treatment – years later), not the cocaine. Shame – is meant to be good at numbing the mouth!

    Being sick when you’ve nothing to be sick of – yuck (and ouch).

    Glad you sound as if you’re doing ok. I’ve still got GvHD some 16 years later which is a whole new ball game. But always delighted to hear of a good story (& well written too), which (fingers crossed) has gone well.

    Lol at the ice cubes – I hadn’t eaten for 23 days, when I came out, the only thing I wanted was a ‘cola’ flavoured ice-pole! (We had a devil of a time tracking them down!).

    Good luck & best wishes to you

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