You may or may not know the mobile game Wordscapes. Over calming new-age music, players are tasked with making as many words as possible out of a box of letters. The backdrop is a forest or a mountain range, and your mini-successes are rewarded with the sound of tinkling bell chimes and jingling coins. Swiping your fingers through the letters, and watching the words fly on to the grid, is an extremely soothing experience.
I used to wonder how I would spend my last remaining days if I were ever to find out I had only a short time left to live. Would I write that novel we’re told we all have inside us? Campaign to raise awareness of whatever merciless health condition I’d been struck down with? Or say, “To hell with work!” and spend whatever precious time I had left making memories with my family?
Sadly, I no longer need to wonder. In January 2018, I was told I was developing a blood cancer called acute myeloid leukaemia. It was progressing rapidly, the doctor said, and unless I could find a stem cell donor and undergo a successful transplant by the end of that year, I would likely die.
In the days and weeks that followed this earth-shattering news, I did not start a novel, run a charity marathon dressed as a penguin or even spend that much time with my family. Instead, I lay on my bed all day and played Wordscapes. E-U-D-G-E-L … Deluge. S-A-C-E-K-S-I … Seasick.
You learn a lot of surprising things about yourself when you are diagnosed with a serious illness. I learned that I might suddenly unload the news of my impending death on unsuspecting strangers (an utterly terrified neighbour at 8am). I discovered that it was easier to discuss the disease with my Swedish hairdresser Miranda than with members of my own family. And I found out just how poetically I could write a letter to my 18-month-old daughter Romy, telling her how much I had loved her (cliched star metaphors? D minus).
Perhaps the most surprising thing I learned about myself was that, even with less than a year to live, I would still turn up to a speed awareness course. The grim reaper may have been sharpening his scythe, but that wasn’t stopping me from boarding a 56 bus on a freezing February evening, trundling slowly through London, and sitting in a deathly quiet room to watch videos about T-junctions with a bunch of people who had also gone 27mph in a 20mph zone. Looking back, it wasn’t just the least rock’n’roll thing anybody has done; it was more evidence that in the aftershock of a cancer diagnosis I was unable to act rationally. My refusal to take three licence points with me into the afterlife was just one of the more peculiar symptoms.
* * *
It had taken quite a while to diagnose this cancer of mine. In the summer of 2017, I’d been losing weight and feeling low, and my GP had rather reluctantly sent me for a blood test. At the follow-up, she explained how it had all come back “normal”, and it was only when I pointed to her computer screen and said: “So what does that big red cross mean, then?” that she said: “Oh, that’s just your platelets … they are a little bit high, I suppose. Would you like another test, just to be sure?”
There was a lot of this kind of thing, because nobody suspects blood cancer in a healthy-looking man in his 30s. During a bladder scan following a urine infection, a nurse slid the cold, jelly-laden device over my abdomen and gasped: “Oh!” – which is not something you want a nurse to gasp while conducting a bladder scan. “Are you aware that you have a massive spleen?” she asked. “It’s three times as big as it should be, and it’s pushing your liver and kidneys right around your back.” This didn’t sound ideal.
Still, nothing much happened, and I carried on trying to get on with life with my high platelets and my gigantic spleen and an increasing anxiety weighing on my shoulders. Every time I Googled these symptoms, the search results failed to reassure me. I worried that I had something seriously wrong with me. The fact that I had spent my life worrying I had something seriously wrong with me (but inevitably didn’t) was only faintly reassuring. When I told a friend that my jeans were starting to fall down, he joked that this would be the last time he saw me. But when I finally got an urgent referral letter through the post, my wife Helen Jane stopped saying: “So how’s your pretend cancer today?”
At the hospital, a friendly doctor asked some simple questions, made out everything was fine, then announced he wanted to do a bone marrow biopsy. Immediately. I rolled on to my side on a bed while his young colleague struggled to push a needle so deep into my hip bone that he could extract a cylindrical sample of my marrow. The whole thing felt weird and invasive, as if an internal bruise was being vacuumed through the insides of my legs and sucked out of my backside.
But it was nowhere near as horrible as waiting for the results. The slow torture of counting down to that day. And then when it arrived, I sat with Helen Jane in the cramped corridor of the haematology department and realised that someone out there already knew my fate and I didn’t. Any minute now, someone was about to call me into their office and say: “False alarm, you’re perfectly fine!” or, “I’m afraid you might want to take a seat … ” or, “You’re a legit medical freak and I’d like to show you off at a conference in Buenos Aires”, or quite literally anything, and I had no idea.
As it happened, a short guy with glasses beckoned me to his office and said: “I’m afraid your samples are still not back from the lab.” And so we had to do the same thing all over again in a fortnight.
The problem with going back to the hospital, I discovered, was that every time I did, my diagnosis seemed to get worse. At that first appointment, I was told that, although the sample hadn’t been analysed yet, the worst case scenario was that it would be a cancer called essential thrombocythemia (ET). This is a condition in which the body makes too many platelets – the blood cells responsible for clotting – and, although there is no cure yet, it can be managed with aspirin alone, at least for a time. There was a chance it could transform into something worse at some point, but the odds of that were fairly slim. Many lived with ET into old age. The doctor promised me: “You will live a normal life.”
But when I returned a fortnight later, my biopsy results had arrived and the doctor was apologetic for getting my hopes up. The scans revealed that the ET had already transformed into something much nastier called myelofibrosis, in which the body produces so many extra cells that it irreparably scars the bone marrow until the sufferer can no longer produce blood. I would need to start a lifetime course of oral chemo as soon as possible.
It was on the next visit, when I turned up to get my prescription, that I was told that my case had been discussed by a multidisciplinary team of experts, and they had concluded that I was developing acute myeloid leukaemia – the very worst thing ET could turn into and a rare occurrence – and would need an immediate stem cell transplant. There was no counselling on hand as we left the room; no one there to make sure we understood the realities of what we had just been told. Instead, I staggered out into the bright January morning clutching Helen Jane’s hand. We walked in a daze past busy people whose lives hadn’t just been turned upside down until we stumbled into a silly vegan cafe and I became possibly the first person on Earth to contemplate their imminent demise while stirring the petals in a lavender mylk latte.
* * *
“We need to make memories while we still can,” said Helen Jane, which was how we found ourselves at London zoo with Romy less than 48 hours after hearing the most devastating news of our lives. That’s another thing you learn: how you, and the people around you, will respond in a crisis. I wanted to hide away and research everything I could about my fatal new condition. Helen Jane wanted us to bury our heads in the sand, stay positive and try to get on with life.
“We’re making memories,” we silently told ourselves, as we repeatedly dragged Romy from her cosy pushchair and forced her to stare at various species of monkey. Isn’t this fun? Oh God, I’m going to die. Look, a giraffe! The last giraffe I’ll ever see? No, not that, Romy, that’s a pigeon. I am going to miss you two so much it physically hurts. The trains on the way back were all cancelled, and as we walked through a Sainsbury’s car park, I started to cry, my voice coming out weak and wobbly when I tried to rage at the gods: “Why is this happening to us?”
It was all so hard to compute. I was healthy, sort of. True, I had spent my 20s living out some ludicrous dream as a music journalist for the NME, doing various things I shouldn’t have while travelling the world and meeting my heroes. But by 30, I was happily married to the love of my life; we had just bought our first home together and settled down (ie stayed in every night watching episodes of Don’t Tell the Bride). It wasn’t all as nauseatingly perfect as I’m making it sound: I’d had struggles with my mental health and was starting to feel increasingly disillusioned at work. But then, in 2016, our lives were transformed by Romy’s arrival. From feeling like a jaded music writer, I was now an energised young dad. She was my little shadow as we went for 6am croissants together, traversed the log bridges in the local park and sang made-up songs on the piano. All I wanted to do was make life good for her.
Now, I realised, I might have less than 12 months to “make memories”. I’d read about people, men especially, who had received terminal cancer diagnoses, and the narrative always seemed to be one of commendable stoicism. The blokes who preferred not to talk about it, or even declined to tell their friends they’d been diagnosed for fear of – oh God, no – eliciting some sympathy. The family men who said: “It’s not about me” and, “It’s worse for my wife and kids.” People with cancer are lauded in the press for achieving unimaginable things, refusing to let their diagnosis affect them – but what about those of us who just want to collapse into a heap with the terror of it all?
I knew other people going through similar things. My friend Pat, diagnosed with a brain tumour called a mixed glioma, was putting me to shame by writing a bloody book on neuroscience. You’d never hear him complain; he’d sooner talk about obscure 60s garage bands than the lemon-shaped thing growing inside his skull. But I wasn’t able to shut out my diagnosis. It was as if a giant wrecking ball was repeatedly swinging through me. For brief moments, when the ball was at its highest point, I could achieve a glimpse of normality, maybe even maintain a chat with a friend about whether Liverpool would miss Philippe Coutinho. But then the ball would come careering back through me, walloping me harder each time with the reminder: “You’re going to die! You’re actually going to fucking die!”
Each night, after drinking enough wine to make myself sleep, the wrecking ball would wake me up around 3am and I would lie awake in a cold sweat until the birds started chirping outside and Romy began to stir. Then I would ask Helen Jane to go and deal with her because, shamefully, I just couldn’t face it.
This was the biggest irony for me: that the thing that scared me most about dying – not seeing my daughter grow up – was also the thing I couldn’t stand to do in these remaining days. While Helen Jane sorted out her breakfast and got her dressed, I would be frozen in fear in the bedroom. Instead of soaking up every last second of my time with Romy, I would hurry her off to nursery so I could sit alone, alternating between Wordscapes and frantically Googling life expectancies. My weekend visits to the park with Romy were unbearable. I wanted to shake the other bored-looking parents and scream: “YOU DON’T KNOW HOW LUCKY YOU ARE” which is not generally regarded as good playground etiquette.
It was not helpful to be so out of sorts, because there’s a whole load of admin that comes with a serious cancer diagnosis. It was a little late now to try to take out the life insurance I’d got a quote for in the summer. But there were other things to be getting on with. I spent three full days going through all the photos on my phone, before ordering 548 prints which would come thudding through the letterbox one morning. I called a sperm-freezing clinic to book an appointment, in case Helen Jane would like another baby in the near future. The woman who answered didn’t seem particularly moved by my plight and instead just quoted the crippling costs at me. Could she not do it any cheaper for a dying man? Occasionally during this period, I would have what I might best describe as “shit out-of-body experiences”. I would tell a dentist who asked if I had any new health conditions they should know about: “I have a blood cancer” – and for a second it didn’t sound like me speaking at all, more a film I was watching about some poor sod whose life was suddenly going to be cut short at 38.
* * *
One of the first people I called after being diagnosed was Pat. He had already changed my life once, back in 2003, when he phoned me on my parents’ landline to ask if I’d like to ditch working in a British Gas call centre and write for the NME instead. In doing so, he set me off on a fulfilling career that would involve being mocked by Liam Gallagher, sued by Morrissey and threatened with death-by-cactus by an army of angry Lana Del Rey fans.
Fifteen years on, Pat was proving to be my saviour for a second time. I hadn’t known how to talk to him about his brain tumour, but he knew exactly how to reassure me. We met up and bonded over increasingly dark jokes: what if new drugs that could cure us were discovered and approved just as we were running out of time? Would we be camped outside the pharmacy on the day of their release, like an oncological version of the day Oasis’s Be Here Now came out?
Pat had made himself an expert on brain cancer. Embarrassingly, I didn’t even know where my blood was made before all this; I just assumed it was always floating around in my veins … maybe regenerating itself? I dunno. I followed his lead, though, and was soon reading up about blast cells, signalling proteins and the potential role of obscure genetic mutations. A bit of knowledge can help you become a good advocate for yourself.
It was reading up that made me realise I could request a hospital transfer – to one that specialised in stem cell transplants. I found one by Googling “hospital”, “London” and “best at stem cell transplants” and waited to see a new team of doctors. These waits between appointments were always the worst bit. Might they tell me that things were even worse than originally thought? That there was no hope of treatment at all?
The waiting room was packed when the day finally arrived, and by the time I was called, two hours later, Helen Jane’s hand had turned white because I was clutching it so hard. We went in, took a deep breath, and heard the doctor deliver the dreaded news: she hadn’t received my scans and could we come back in a fortnight?
And so, a couple of weeks later, I was back in the same waiting room. An hour passed, then two, then three. Eventually there was nobody left to be seen but me. A porter began stacking chairs around me. I’d somehow been forgotten. A registrar was found who agreed to see me, having quickly read the notes.
I took another deep breath, braced for impact, and then he gave me the most remarkable news I had ever heard in my life: that I had essential thrombocythemia after all, the very thing I’d originally been diagnosed with. They believed the first hospital had misinterpreted the scans. It was a last-minute reprieve from death row.
Pat couldn’t stop laughing when I told him that I had almost – to paraphrase Withnail – had a stem cell transplant by mistake. He was delighted for me, genuinely overjoyed that I’d had such a slice of luck.
The only problem was that my initial hospital didn’t agree with this new diagnosis. When I returned to be discharged, I foolishly expected them to explain how they had got it wrong, maybe even be apologetic. Instead, the bespectacled doctor said simply: “I can only tell you what our clinicians say, which is that you need urgent treatment.”
OK, I told him, but that leaves me in a rather tricky situation. I have one hospital telling me to take a baby aspirin each day, and another telling me to have a stem cell transplant.
“Which one are you going to go with?” he asked.
“I think I’m going to go with the aspirin option,” I said. And we both burst out laughing.
It was funny, but also not funny. It was draining. The next few months were spent in limbo. I’d become Schrödinger’s patient, simultaneously dying and not dying. My obsessive Googling about my condition was making me mentally unwell. Meanwhile, actual life refused to pause, not even for a second. In fact, it cranked up the accelerator and appeared to be joyriding at 100mph. In the space of what felt like a couple of weeks, I returned to work, we accepted an offer on our flat and, magically, Helen Jane became pregnant. We were overjoyed. But straight away she found it a tougher pregnancy than the first – she felt tired and bloated. One day, after reading an article about it, she sent me a text: “Don’t laugh but … I think we’re having twins.”
At the scan – fingers crossed behind my back that it’s just the one baby, please – I got flashbacks to the previous few months of biopsies and ultrasounds. The beeping machines, the long silences, the wait for answers. Perhaps that’s why I realised before Helen Jane did. I could see it in the nurse’s face and the fact that her cheerful chat had dried up. We weren’t having twins. We weren’t having another baby at all.
Outside, we cried on each other for about five minutes and then pulled ourselves together. We had both reached our limit of bad news. “We will be fine,” said Helen Jane. “It’s probably for the best right now.”
“It could be worse,” I said. “It could have been twins.” And thankfully she laughed.
Helen Jane had to get back to work and outside it started to drizzle. Our estate agent called and I immediately started crying to him about miscarriage and blood cancer. He dealt with it admirably, considering. The call came to an end and before I could process what had just happened I was approached by a man who had a face tattoo and a lack of respect for personal space. Do I have any change, he asked? Sorry, I said, still shaken by the scan results and the fact I had just cried about it to an estate agent. “There’s a cashpoint down the road, it’s only a few minutes away,” he said. I told him I didn’t have time. He started to get aggressive.
“I’ve … just … lost a baby,” I stammered.
“And that’s my fucking fault, is it?” he screamed in my face.
A day or so later, after having our failed pregnancy removed under general anaesthetic, Helen Jane got a call from the hospital. She’d had a molar pregnancy that contains cysts; there was a small chance that this could spread to nearby tissues and become – wait for it – cancerous. They had sent some tissue to the lab but couldn’t tell her the results over the phone; she would have to go in. I was also waiting for my own test results, this time ones that would reveal if I had any genetic mutations indicative that my ET was likely to transform into something worse in the near future. Our appointment letters arrived in the post and signalled the precise point in which the scriptwriters of our personal drama had finally jumped the shark: we were both off to find out our cancer results on the same day, at the exact same time.
* * *
I look back now and think that moment was probably a turning point. I remember sitting in my own hospital waiting room, consumed with so much panic – for me, for her, for Romy – that I barely knew what I was worrying about any more. And I recall getting a text from Helen Jane to say her biopsy was clear, and feeling such relief that I no longer even cared about my own results. Romy would have one parent by her side whatever happened.
My outlook began to shift. I found a supportive online community, MPN Voice, with many people going through the same difficulties and anxieties as I was. MPN stands for myeloproliferative neoplasms, an umbrella term that covers a range of cancers including ET and myelofibrosis. Through this group, I learned a lot about potential treatments on the horizon. I also realised how difficult these cancers can be to diagnose, often reliant on a very specialised interpretation of a scan that could bamboozle even well-trained general haematologists.
I attended some sessions with an amazing, empathic therapist. I started a course of antidepressants that stabilised my wobbly brain and stopped me spiralling quite as often. Most importantly, I began to look around me again. It was easy to feel sorry for myself compared with those healthy-looking dads in the playground. But the more time I spent in cancer centres, the more I learned that there are always people worse off than you – people barely able to walk with the impact of their treatment, or facing their final days. You have not been singled out by a uniquely cruel universe at all.
It was time, I realised, to start living. A second bone marrow biopsy, performed at the end of 2018, showed no significant changes for the worse in my disease. And so, with my newfound appreciation of the ticking clock that beats inside all of us, cancer or no cancer, I really did start living. I threw myself into work, took up running again (smashing my pre-cancer personal bests just to prove I could) and absorbed huge joy in every tiny stupid thing: supermarket trips, the nursery run, edging the lawn. A visit to soft play now feels like paradise. Helen Jane got pregnant again, and this time it was neither twins nor a miscarriage. Nine months later, we welcomed Teddy into the world, our miracle baby who is loud and hilarious and able to get away with waking up at 4am every morning on account of the fact he looks like a baby red panda.
I am now doing what I once thought was unthinkable: living happily with a chronic, incurable blood cancer. In a way, I am living happier because I have a chronic, incurable blood cancer. There are more than 130,000 people living with chronic but treatable (rather than terminal) cancer in the UK. I am under no illusion that I’m one of the luckiest of this small group.
It is now five years since I was diagnosed, and a lot of things have happened since then. My blood counts have kept climbing, but mercifully slowly. These days I am not just making too many platelets but too many red and white cells, too. It means my cancer diagnosis has changed once again to one called polycythemia vera, an even sillier name than essential thrombocythemia, and one with higher risks of progression – but still something most people can live with for a good amount of time. Each year, only two out of every 100,000 people will be diagnosed with it. It means every few months I have to go into hospital for a venesection, in which a nurse drains a pint of my blood and then dumps it in the bin (“It’s no good for anything else,” they tell me, somewhat dishearteningly). This procedure helps control the proportion of red cells in my blood, and although it sounds slightly medieval it’s a very welcome alternative to starting on the oral chemo.
It’s not without challenges, however. I can get unexpectedly tired. I sometimes have numb, ice-cold feet regardless of the weather. During the pandemic, a letter arrived telling me that, like many cancer patients, I was clinically extremely vulnerable. It explained that I shouldn’t venture outside – not even to sit in the garden or take the bins out! – and that if I wanted fresh air I should open a window. This level of shielding sent me slightly loopy. Hugging my kids after a day in nursery felt like dicing with death. When Helen Jane invited a window cleaner inside our house, I ran downstairs screaming at him to get out or he might kill me.
But in general, things are good. Occasionally, I have to drag my medical files out from under the bed and reread that initial letter telling me I needed an immediate stem cell transplant, just to make sure that I hadn’t invented it all.
* * *
Back when things were still bad and I couldn’t relax about my diagnosis, I received a text from Pat. It was unusually jumbled and badly spelt. It said that he’d had a stroke and was in a hospice; he signed off with “ffs”. It sounded so unlike him that I thought he might have been joking around. But he wasn’t. While I’d been struggling with my new diagnosis, he’d been keeping me in the dark about his own worsening condition.
I visited, and he was in a bad way: bloated from steroids, unsteady on his feet and wearing extremely comfy hiking boots (a sure sign something wasn’t right given Pat’s razor-sharp dress sense). He refused to acknowledge any of this, of course, and offered to help decorate the house we were about to move into. What was I supposed to say? Surely he knew he wasn’t getting out of this hospice, certainly not to go and paint a friend’s living room? In a few weeks’ time, he would be dead. I was devastated, but also a little angry. Couldn’t he have let me look after him, the way he had looked after me?
The truth is, you don’t really know how you will react when your mortality comes swinging into view. Pat once said that his clinician had told him: “You’re in denial … and that’s probably a very good idea.” That worked for him – and he made sure he made the most of his final days. Now, whenever I think of Pat, I promise that I’ll make the most of mine.
• For more information, visit mpnvoice.org.uk. Tim Jonze is running a charity race for MPN Voice in October. You can sponsor him at justgiving.com/fundraising/Tim-Jonze
