If you’ve found me through my blog, here’s a quick run-through of my story…
I was diagnosed with leukaemia aged 22, in 2013. After aggressive chemo and radiotherapy, I had a lifesaving stem cell transplant thanks to a then anonymous donor. I’m now friends with my donor and I write about stem cell donation, among other things.
2020 UPDATE: sorry for the massive wodge of text on older posts. At some point WordPress unilaterally deleted all the gaps between paragraphs.
I didn’t write anything for a long time this year because I was too ill. There have been a lot of ‘hiccups’.
Except I don’t think anyone’s ever had to take morphine or undergo serious surgery for their ‘hiccups’. It’s the kind of term a well-meaning medical professional would use to describe the past year since my transplant. No sign of relapse so far, no organ failure. Still alive. Never once been in intensive care. For a transplant patient I’m ‘lucky’.
I don’t feel it, most of the time. But I’ve seen what ‘unlucky’ looks like.
The first time I met Sunny was in the transfusions suite at my hospital. It was a few months after my transplant. I still needed regular top-ups of red blood and platelets to keep me going.
In walked Sunny asking for a blood test; big brassy blonde wig, black leather jacket, jeans. As I sat there with my bag of platelets ticking away, we got chatting. I recognised her face. While I was in isolation I used to see her every day, from my window on the ward. Sitting on a bench in the sunshine with her chemo drip, cannula in one hand, cigarette in the other, surrounded by friends and relatives, usually at least a dozen of them. She came from a big Catholic family; I found out later. I remember her now from that time – a bald girl in a red polka-dot dress, chain-smoking, laughing – looking pretty carefree, for someone hooked up to a bag of poison.
I’d assumed she was around my age, in her twenties. But she told me she was 33. She had two teenage daughters. She’d been diagnosed with ALL, like me. We had the same consultant too – she called him Dr Horror, she told me with a laugh.
She had just had her second bone marrow transplant – she’d only been discharged from the ward a couple of days earlier. I was incredulous. After one transplant I could barely string a sentence together, and still months later I felt barely alive. But here she was after two, yakking away, chatting about the whole thing like it had been a particularly stressful holiday in Ibiza and then the flight delays were a nightmare and she just wanted to get home now and have a bath and a cup of tea.
She was talking. I couldn’t keep up. ‘It took ages to get diagnosed. First I thought I had flu, then I felt so tired I couldn’t get out of bed for weeks and then my GP wouldn’t see me. I went to her and she said I had depression but I knew it wasn’t. I kept going back. Then she refused to see me. The same GP who’s known me 30 years. I’ve been through two pregnancies with her. She didn’t want scans or nothing…
‘I had a transplant from my sister but it was too good a match, too close to my own bone marrow, like identical twins they said, so I relapsed. And then the doctor here’s telling me I have six weeks to live and I should be making my will and I’m not going to see my daughter’s 16th birthday. But I said no. I pleaded with them to give me another transplant and they kept saying they wouldn’t do it. They said it would kill me.
‘But I’m not giving up that easy. I begged for another chance and then they found a donor in Germany. And then he went missing. He disappeared. They literally could not get hold of him. By this point they were saying I had a few days left if they couldn’t find a donor.
‘But they found another donor in the end. The transplant was worse this time round though. They couldn’t put a line in me, it kept getting infected. And I couldn’t have total body irradiation again so I had twelve-hour chemos, with a cannula. I went blind for a few days. They thought I’d had a stroke. That was the worst. I couldn’t see my girls. But, you know, I’m still here.’
The nurse came over with Sunny’s blood results. I was shocked – a bit envious – that her counts were all decent levels; she didn’t even need a transfusion.
That was it with Sunny. She was invincible – implausibly unaffected by all the ravages of the nuclear-force treatment that she’d been hit with. She was like one of those lovable cartoon characters that inconceivably springs back to their original self – no matter how many cartoon cliffs they fall off or cartoon cats devour them whole, they’re always back in one piece for the next episode.
I bumped into Sunny on most of my clinic visits. She was friendly with everyone, she called everyone darling. She talked a lot about her daughters, with a fierce matriarchal pride. She was a single mum, and she made it clear that she didn’t stand for any mollycoddling; in her house there was hard work and discipline. Her eldest was going to study law at university, she said.
She talked about her struggle to eat, the appetite loss and the nausea. I noticed her getting thinner and paler. She stopped wearing her wig. She complained of back pain. The doctors sent her off for scans.
It turned out the cancer had spread to her spine.
I knew that the prognosis was not encouraging. But whenever I saw her I said ‘you’ll be alright’. Her confident response every time – ‘I’ll be fine’ was enough to convince me.
One day I was admitted to the ward with a virus, something that happens from time to time. Because my immunity is so low, my body can’t fight off infections by itself – it needs strong intravenous drugs. I had a bed on the bay, with two elderly ladies, and Sunny opposite me. She was meant to be starting chemo the next day. She had suffered a stroke a few days earlier and lost the sight in one eye; she was wearing a patch over it, like a pirate. Her head was completely bald. She said prayers; she had a string of rosary beads. She was weaker than ever. Her mouth downturned at the corners, her speech was slurred. But she still managed to slip outside every now and then for a cigarette.
‘Where have you been?’ One of the elderly ladies asked. ‘Seeing your boyfriend?’ We all laughed.
I remember, later, Sunny lying on her bed while a doctor tried to persuade her to have a feeding tube inserted. She protested. She wanted to eat. She still craved eggs and bacon, she said. He kept insisting: ‘The muscles in your mouth are too weak now to chew anything.’ I remember wishing he’d leave her alone. I couldn’t see the point in prolonging her suffering.
And still I never really believed she would die. Here was a woman who’d defied medical expectations so many times, outlived the predictions, laughed death in the face. So when I was admitted again to the ward a couple of months later, I asked if Sunny was around.
‘She passed away a few weeks ago.’
I felt like laughing. It was a joke. I knew how ill she was but she couldn’t die. She couldn’t be talking and smoking and laughing one day, and dead the next. She was in hospital for god’s sake. You don’t die in hospital – not if you’re only 33, my brain said. They have intensive care units, there are resuscitation methods. In a modern hospital there is every substance and mechanism imaginable to keep you alive: blood transfusions, oxygen, CPR, insulin, dialysis, IV antibiotics.
There are drugs – there are so many drugs – drugs to salvage every kind of organ failure. This is 2014, they don’t just let you die – she’s 33, she has her girls to look after, they need their mum, how can she not be alive. You’re not meant to go until decades later, when you slip away peacefully in your sleep.
I write all of this because I’m sick of hearing that cancer is a battle that teaches you strength, and you’ll come out the other end a better person (if you come out the other end at all.) I’m sick of hearing someone say they survived cancer because of their positive attitude: ‘I never once believed I was going to die. And that’s what got me through it.’ Or, patting the head of a chuckling toddler: ‘It’s this little chap that kept me going. I knew I had to stay around for him.’
Because dying isn’t a decision, and the fight for survival is not a fight which the more defiant are destined to win. I think of Sunny now with her rosary beads, as I last saw her – staunchly convinced that her God would show her mercy. But it doesn’t matter how relentlessly optimistic you are. Cancer doesn’t care about your mental strength, cancer doesn’t give a toss how much you meditate. Cancer, as someone once told me, is an indiscriminate fucker.
And despite my pessimism and my cynicism, I’m still alive. And on my visits to clinic, there’s still one face I half-expect to see. ‘Alright darling. Yeah I’ll be alright.’
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.
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’.
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?’
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 bus to my local 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.
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.
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.
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.