Bad Blood (part II)

 

Central line

 

On the Cancer Underground, you can take the Acute Lymphoblastic Leukaemia line. I don’t recommend it, personally. Lots of delays, frequent disruption and constant complications (especially if you have a stem cell transplant). Only 40% of passengers make it out alive.

But back to where it all started. Here I am, out of breath, faint, waiting in A&E, expecting a jab in my arm. Blood test and then take the bus home.

The registrar. She looks at the swollen glands in my neck. She winces.

‘Haven’t you been to your GP?’

‘I did. They said swollen glands are normal.’

‘That doesn’t look normal to me.’

I’m told to wait in a side room. No one comes. I go out looking. Outside are corridors, a bustle of men shifting beds on wheels. I head back to the waiting room. Toddlers clawing at the skirts of their mum’s hijab. A man sits on his own as blood gushes from his nose. He holds a toilet roll to his nostrils to soak up the flow. The entire roll is drenched red.

A boy of about 12 in a wheelchair waits patiently next to his dad. A couple of porters approach them, apologetic. ‘We urgently need a chair. Is it alright if we borrow yours for a minute?’

The boy smiles, nods. His dad helps him out and onto one of the seats.

Eventually I find a nurse. She frowns at me. ‘You should be on your own.’ She leads me back to the side room.

‘What’s going on?’ I ask.

‘I don’t know what to say,’ she says. ‘Your haemoglobin levels are 5.’

I’m sorry?

‘They’re half what they should be.’

She runs off to attend to someone. I keep waiting. A man comes in and pulls me by the arm. ‘Right you, off for the kidney scan!’

What?

‘You are Maria, aren’t you?’

A few hours later I’m taken to an isolated room on a ward upstairs. I’m put on a drip. Fluids. The rest follows in my mind like a montage from a film. Because only in films have I seen drips and machines and medical equipment. A blood transfusion. More fluids. Scans. Needles. I remember the needles, the hurtling pain, the probing. A shifting panel of different nurses try and fail to insert cannulas in my veins, to give transfusions, to take blood. Cannula, I say now, over a year later, because I know the word. It was only another needle then.

Back then cells were rooms in prisons. If I heard the words ‘Central line’ I thought of the red stripe across the Underground map, not a tube inserted under the skin of your chest.

central line

 

When three doctors arrived the next day, and shook my hand, and shook my mum’s hand, and told me I had leukaemia, they might as well have been speaking another language. They had waited for my mum to arrive before they gave me the diagnosis. They were very careful, very polite. They handed me a Macmillan booklet and left us alone together to ‘talk things over’.

ALL

I looked down at the booklet – ACUTE LYMPHOBLASTIC LEUKAEMIA in green letters. It hadn’t entered my mind that there might be different types of this disease.

‘Leukaemia,’ I said to my mum. I was 22, I had heard of it before, obviously. ‘How is that related to cancer?’

Bad blood

blood

 

On this day last year I got a call.

It was my GP (I’ve only met him once.)

‘The results of your blood test are here. We think there’s been a mix-up with the samples. You can’t possibly be so severely anaemic. Can you come in again to be re-tested?’

I had been ill for over a month. The glands in my neck had swollen up; there were solid lumps on either side. I had pains in my back and ribs, recurrent fevers, a sore throat. I was tired like I’d never been before. My entire body ached; I could barely move. But every time I rang the doctor’s surgery, the receptionist told me the next available appointment was in two weeks’ time. So I went to a walk-in weekend clinic and waited for several hours in a swarm of hysterical toddlers.

The first time the doctor was friendly, in an all-girls-together kind of way.

‘Everyone worries about swollen glands, like it might be – you know – cancer – or something,’ she smiled, and prescribed me a course of antibiotics.

‘You’ll be fine in no time at all,’ she said. ‘Look at you! Glowing with health!’

‘It’s make-up,’ I replied.

‘You have to tell me which products you use!’

She was wrong. I didn’t make a miraculous recovery. And the surgery were still ‘booking for two weeks time, sorry,’ so I went back to the walk-in clinic the following weekend. My glands were visibly swollen, protruding from my neck. But it was January, and the clinic was overrun with rugby players who had succeeded in injuring themselves at the first session of the new year, so I was told that all the doctors had more serious cases to deal with. After several hours’ wait I was seen by a nurse, who barely glanced at me, and prescribed another course of antibiotics.

Eventually I achieved the hitherto impossible; I secured an actual appointment at my local surgery. Not with my GP – I wasn’t granted an audience with the man himself – but a student doctor who was standing in for someone else. She examined me briefly and said that ‘swollen glands can take a while to go down, sometimes.’ It had been over three weeks by this point. The following week I came back and was seen by another doctor – another doctor who didn’t work there, but was standing in for someone else.

By this time I was scared.

‘I’ve never felt like this before,’ I remember saying to my dad. I was shocked. I had been ill before, had the flu, like everyone else. But now I was too weak to hang my socks on the radiator.

So I asked the doctor if I could have a blood test. I’d been googling symptoms and was convinced I had glandular fever.

Fast-forward three days later, and I’ve just been told that the blood test has to be redone. I’m about to leave the house when I get another call – another doctor from the surgery. She has a kind voice.

‘The test shows a negative result for glandular fever,’ she says.

I breathe out, a sigh of relief. After all, glandular fever is the worst affliction imaginable.

‘But I think you need to go to A&E straightaway,’ she says, hurriedly. ‘Get another test. Just to check that it’s, you know, definitely not glandular fever.’

I find my keys, bag, shut the front door, walk up the street, with an odd ringing sensation in one ear. I see a family friend walking on the other side of the road, walking in her long grey winter coat, her dour expression. She doesn’t see me. Usually I’d stop to say hello. But my ear is ringing and ringing and I’m struggling to breathe. I take the H37 bus to West Middlesex Hospital.

I don’t have to wait long to be seen. The kind-voiced doctor has already called up A&E. Thank God; I’ll be out in a couple of hours, at most.

I don’t know it then, but it’s going to be a while before I step outside a hospital ward.

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My Perfect Match

thankyou

 

How do you thank someone for saving your life?

Today is seven months exactly since I received a bagful of stem cells from an anonymous donor. Six million of them, via my Hickman line. I lay on a hospital bed, wiped out from a week of chemo and radiotherapy; I’d just had the most intense treatment that can be given to a human being without killing them. A nurse hovered around, intermittently checking my blood pressure and heartbeat for signs of a reaction. As the cells flowed through the tube and into my veins, the room was permeated with the unmistakable scent of boiled sweetcorn. (I was warned this would happen. For some reason stem cells smell like sweetcorn).

I thought of the stranger who had willingly given his cells to save my life. Who had undergone various blood tests, an ECG, then four days of growth hormone injections to stimulate his cell production – and the side effects of aching bones. Who had sat for four or five hours with a cannula in his arm while his blood was filtered through a machine. For someone he’s never even met.

All I know about my donor is he’s 24 (a year older than me) and a ‘chunky lad’. In two years’ time, I’ll be allowed to meet him if I want – and if he agrees. Until then, the rules say, I can send him an anonymous thank-you message, as long as I’m well enough.

Up until now, I haven’t been well enough. The last few months have been rough. For a while it looked like the transplant hadn’t worked – I hadn’t ‘engrafted’, my bone marrow wasn’t producing blood cells. I was finally discharged from an isolated hospital room 53 days after the transplant, but with no white blood cells, my immunity was non-existent, so I was virtually house-bound. I couldn’t go to public places. I could only see a handful of close friends and relatives. Every couple of days I had to go to hospital to have blood and platelet transfusions, since my body wasn’t making enough to keep me going. I had to inject myself daily in the thigh with growth hormone factor.

In the end the doctors asked Chunky Lad for a few more cells, and he obliged. I received a top-up in autumn – though by this time my lazy marrow seemed to have woken up anyway, and was beginning to produce cells. Whatever the reason, I could finally escape the transfusion room.

transfusionsroom

But then there was the Graft versus Host Disease. Tell people you have cancer and you get some well-deserved sympathy. Tell people you’ve got Graft versus Host Disease and you get a blank expression. GVHD occurs when the donor’s cells recognise yours as foreign and launch their assault, usually attacking the liver, the digestive system – or in my case, the skin. For months now I’ve suffered from constant itching and rash. My skin got so dry that the soles of my feet cracked and bled; walking became painful. The surface of my whole body was splintering off like dandruff – I couldn’t move without shedding a flurry of white flakes. No amount of ointments or creams seemed to have an effect, and I was forced to take high doses of steroids, which weakened my muscles, and kept me awake at night.

It’s still a daily struggle, and I have to spend several hours each day applying creams just to keep the itching at bay. But now I’m having specialist photopheresis treatment at a dermatology clinic, where I’m plugged into a machine for a couple of days a fortnight. It’s a pain having a Hickman line, and the treatment will carry on for at least six more months. But the GVHD seems to be slowly improving a little. And now his cells are attacking mine a bit less, I think it’s time I wrote Chunky Lad a thank-you note.

The only question is what to say. To this total stranger whose blood is now flowing through my veins. To this person I’ve never met, who by a complete accident of chance, happened to have the same HLA tissue type as me – closer to me than my own sister, who, like the majority of siblings, was not a match.

With all the complications that arise from a transplant, it’s hard not to feel downcast, at times. Sometimes the future does look bleak. But I remind myself that it’s because of my donor that I can even contemplate a future.

He’s probably saved my life. And there’s no way I can thank him enough.

 

 

Digging your own grave

 

 

melaptop3

Death comes up a lot in everyday conversation.

I never gave it any thought. Not until this year. Until times I found myself stalling to a halt half-way through a sentence; something I’d have blurted out in the past without a thought. When the prospect of death was unreachable, imaginary. Another planet.

Then in February, briefed with statistics and percentages and doctors’ letters, drilling out terms like ‘high-risk’ and ‘poor-outcome’ leukaemia, I noticed how casually the word trips off the tongue.

In a variety of guises. It quietly peppers social niceties and it softens mutual gripes. It lends itself to diatribes over train delays, complaints about bus queues. Predictable whines and frustrations which clutter up the day.

You learn to censor yourself, erase it from your mental dictionary of set expressions.

I think about it now; the number of times I’ve wanted to say that I’d rather die than –. And then I stop myself.

Is it through some unspoken fear of the black hole? That we breathlessly condense the endless enormity, the hysterical impossibility of the idea in familiar phrases, throwaway jokes, cram it hurriedly into everyday chat? So we’re dying for a cup of tea or a cigarette – cause I’m sick to death of the same shit, or you’d rather kill yourself than see her again.

Like we’re always sidestepping away.

I don’t have any time for God, karma, any metaphysical quid pro quo. Against my better judgement, though, I can’t rid myself of the superstition. The thought that there are thoughts, times, incidents you can’t, you shouldn’t ever talk about.

There is the fear, more than anything, of voicing the fear – of what could happen. It will come true. If I let the words out. I’ll jinx my chances.

When the doctor said I’d need a transplant – that the possibility even of finding a donor, was far from certain (around 60%, he estimated) – I stopped talking. I blanked old friends, ignored phone calls, voicemails, messages. I didn’t respond to the many happy returns on my 23rd birthday. I was afraid of what I might say if I spoke, and what might happen, if I admitted that I was scared. Scared that 23 would be the last.

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 glorious menagerie of 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, or George Osborne basking in the glow of improved unemployment figures.

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 briskly: ‘You’re so lucky, imagine if you’d been born 100 years ago. Or in Zimbabwe. 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 infinitely 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:

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