By hannahpartos

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?’

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.

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.’

The things people say

Cancer, when it’s curable, is like North Korea. At times the prospect of imminent danger slips from your mind, and it fades into a dormant kind of fear. It is terrifying. But you don’t think it’s going to kill you. It becomes a nebulous constant in the background. At times you can even laugh about it.

Then suddenly it’s threatening you with missiles.

Or false alarms. You never know.

There are certain anecdotes you don’t want to hear first thing in the morning from a burly man equipped with a full set of needles, when you’re receiving blood transfusions and a nice batch of platelets before breakfast.

‘Girl in this room,’ the nurse told me. ‘10 years ago. Serbian. They were going to deport her. There were lots of delays. Then they tried a stem cell. The treatment wasn’t working.’

I didn’t know what to say.

‘In this bed here,’ he continued with a smile. ‘I remember it like yesterday. Such a nice girl.’

He stopped for a moment, cradling the packet of blood in both hands, then began again:

‘She was given three months to live.’

I felt cold.

He paused for effect.

‘She recently finished her degree. She’s a practising lawyer now.’ He was digging out his phone. I saw lots of hair and smiling teeth. ‘There she is with her fiancé.’

Not everyone, though, can manage to confront mortality and then raise a smile within the space of a few moments. I know that most people have the best of intentions, but some of the cack-handed questions and comments I’ve come across are stultifying. The ambulance driver who asked me brightly, with a big grin, ‘What are you going into hospital for?’ I had been diagnosed with leukaemia an hour earlier. I was in tears at the time. Or the message I received from a former university friend, some weeks ago, after posting several links to this blog on my personal page (as well as an accompanying explanation): ‘Hi Hannah, are you not well?’

Then there’s irony. Often best considered the privilege of the patient. I remember the smug-looking medical student who came in to examine me, bent my elbows at lots of awkward angles and asked too many questions, until a certain picture of a virtuous healthy lifestyle began to emerge. Never eaten meat, light drinker, keen swimmer and runner, tried a handful of cigarettes at most.

He threw his arms up in sarcastic lamentation. ‘Why, Hannah, why?’

On the other hand, I don’t mind being told how inordinately brave I am. It does scare me a little, though. It all seems very ominous. I feel like asking, do you know something that I don’t? I thought the prognosis was encouraging.

The same goes for all the tower of inspiration rhetoric. I don’t agree, but I lap it up anyway. Or people praying for me.

But when there’s any doubt over what to say, an anonymous gift never goes amiss. I’m still trying to establish who sent me this. Thank you to the mystery sender:

teddy

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

 caterpillar

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 an old colleague. 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. Sixteen 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 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. (‘Imagine if I’d been born a few decades earlier! I wouldn’t stand a chance!’)

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.

smileyface

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:

IMG_0059

..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:

IMG_0061

IMG_0064

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

white rabbit

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 mention that I could have a bad trip.

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, trapped in what felt like a liturgical dance of fear and paranoia. 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, so the drug, which had been prepared for me, had to be thrown out. (A doctor later told me it cost £1,300.)

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.

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I was confused. I still am; I don’t know exactly what went on. Two days doesn’t sound like a lot, but it feels far too long when the enemy is in sight.




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 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.