When I found out about the brain tumour that would kill me, I faced my worst fears but I chose t

How does it feel when you’re told you have a rare, deadly disease? For Jessica Morris, it was the start of five years of hell, hope and facing up to her own mortality

My body’s suicide mission revealed itself on 23 January 2016, at around 4pm, at the top of a hill. In the Catskills in upstate New York, nestled in a valley, is a picture-perfect inn. Inside are cosy rooms with log fires. It oozes comfort and warmth. We go every year to this oasis, about 10 families in all, a tradition started by friends who got married there.

This particular year, there wasn’t the usual abundance of snow, and the cross-country skiing had to be put on hold. We were itching to get outside, so I joined forces with three girlfriends and we set off for a hike up the hill.

I was a little uncomfortable because my snow jacket was too large, as were my gloves. By contrast, my snow boots were too tight. I felt weighed down before we had even started. We chatted while our bodies adapted to the cold and our eyes grew accustomed to the brightness of a patchy landscape of miserly snow framed by a dull white sky.

I felt good, safe and happy in the company of these friends whom I never see enough. We upped our pace gently. Alex, who is proportioned like a gazelle, strode ahead. We were reaching a crossroads, and it was time to decide whether to go on or turn back. Alex wanted to go on, Gretchen and Janet were undecided. I was feeling a guilty urge to retreat to the inn, my book and the enticing fireplace. Why did I feel so burdened and tired? I answered myself silently, knowing my answer to the question was the usual self-denigrating one: it must be because I was overweight.

Wait. Something else. Something inexplicably odd.

Within seconds, odder still. I could feel myself growing even more tired and somehow – intangibly – different from how I would normally feel on a walk like this. I opened my mouth to say something, while knowing that I wasn’t sure what I wanted to say. There was something impeding my fluency of thought and speech.

I have a tendency to talk too much. Right now, I needed to at least say whether I wanted to walk on or turn around. But I was stuck, like a mouse on a glue board. I opened my mouth. There was a disconnect between my desire to say something – anything – and my ability to do so. “Agh … ,” I managed, weakly.

I could see Janet’s face, smiling, but concerned and confused. “Just take your time, Jess, and try again.” I tried to breathe calmly, control slipping away. I looked at Alex and Gretchen’s faces. They had the same look of confusion.

And then I saw my eyelids close.

When I regained consciousness, Eric and Josh and other friends were gathered around. Their faces were calm, serious, warm, trying to mask fear. Then I saw my husband, Ed, and I grabbed his hand and felt the fear come down a notch.

Somewhere we transferred to an ambulance. I was lying down, a smiling paramedic sitting by me. She had a cheery manner, and rested her hand on my shoulder as she chatted away. I was slowly becoming more conscious, more inquiring, more sanely scared. I knew I was still on planet Earth, but also that a tectonic plate had shifted.

I was told I’d had a seizure while hiking. I couldn’t begin to process this information. My face was rigid, presenting an artificial default setting of a slight smile. I was given a CT scan. I had to lie with my head in a case to immobilise it, then I was gradually moved, electronically, into a doughnut. It felt suspiciously like a coffin, I thought fleetingly, remembering a terrifying TV film of a young woman who’d been buried alive somewhere in America.

When the CT scan was finished I was told, somewhat matter-of-factly, that there was “something” there and I would need an MRI, the more powerful imaging using magnetic fields, the next day. I might also need surgery.

“A grape” is how the surgeon described the cluster of killer cells he’d scooped out of my head. The operation had taken five hours. The grape had been growing evilly in the left parietal section of my brain. That’s the area at the back of the head behind your left ear. The tumour was about 3mm in diameter and situated near the surface of the brain. The surgeon was upbeat, explaining that he thought it had gone well and I seemed to be recovering quickly.

The job of finally breaking the bad news to me about my diagnosis was passed by the surgeon to a New York neuro-oncologist whom I’m going to call Dr Dre (my son likes his music). Dr Dre’s credentials were excellent. A close friend Clare, who had been through a terrifying cancer experience and had more than bounced back, agreed to come with me and Ed to the appointment.

We were led into a small room. I sat in a large swivel chair, Ed and Clare on smaller chairs against the wall. A smiling nurse practitioner came in and took my pulse, tested my balance, and performed various other routine tests. Then Dr Dre appeared. He leant against the doorway while confirming my worst fears.

“The pathology report found that your tumour is a glioblastoma.”

I knew it, I knew it, I knew it, I knew it. But also: don’t regret, there’s no point.

I was slightly irked that he was standing while I was sitting in this enormous chair; this was clearly going to be a pivotal conversation, and I wanted us to conduct it as equals. But he had a welcome clarity of expression, and soon came across as not only highly intelligent and competent but a really nice guy. When we talked about the side-effects of chemotherapy, he likened it to his wife’s experience of morning sickness, which I found very reassuring.

He then gave me four specific takeaways to hold on to: that the location of my tumour, its size, my bounce-back from surgery and overall robust health put me in a relatively good position. He recommended I undertake the “standard of care” – in other words, the course of treatment recommended for anyone diagnosed with glioblastoma (GBM). This comprised surgery, if the tumour was operable (tick), then six weeks of combined chemotherapy and radiotherapy, followed by a further six months of chemo on a five-day-a-month schedule.

I asked for a prognosis. He said he couldn’t, or wouldn’t, give me one. The disease was too complex, too heterogeneous, and all the statistics relating to survival were, by definition, related to the past.

But I am no fool. As he spoke, I could hear myself respond internally. How can one be in a “relatively good position” with a disease that has a median survival rate of 14 months? A less than 5% chance of surviving five years? There’s nothing remotely good, let alone relatively good, about that. There’s only an overflowing barrel of bad.

Before we left, I asked to go to the bathroom. I had to take a moment for myself. There was a mirror straight in front of me. I needed to stare into it. To stare at my face. To face it – the confirmation of my worst fears. The mirror was big and brand new, so new that it still had sealant around the glass. I noted that the sealant was already peeling. I wondered whether it would need to be fixed quite soon.

Glioblastoma. The worst of all 120-plus different forms of brain tumours. In a nanosecond, my life had gone from one of smooth, predictable joy to one of unimaginable terror. Death. Soon. Everything over. No future. No seeing my children become adults. No grandchildren. No fulfilment of potential. No dreams. No cure.

I felt a sober strength running through me. It wasn’t just a question of whether I could cope with these treatments. Or whether I could even accept such an extraordinary change in my life. It was a recognition that my relationship with this disease was, fundamentally, down to me. That I alone had this unique version of it, and I alone could choose to take the helm. The question staring back at me in the mirror was whether I understood this and whether I chose to engage. Tiny details suddenly became terribly important. The peeling sealant around the mirror. Think about that to avoid the terror. My life was ending. Think about the sealant. I stared into the mirror, a proxy of my poor bruised self, and waited for my psyche to answer. And then it was there, like a high-speed juggernaut come to rest at so gentle a pace the passengers couldn’t even feel it. Yes. I was up to the task ahead. I was and am and will be strong. I chose to take this on.

I started to wrestle with writing down what was happening for my friends. I have written for work for years. But now I felt a compulsion and desire to communicate what I was feeling. I wanted to take the people I love with me, so I would feel less alone. These early blogposts gave me an unexpected strength. I was surprised how liberating it was writing in my voice and at my pace.

Of course I now see this was a form of therapy. I derived strength from being able to articulate what I was feeling, and that in itself felt empowering. The blogs helped give some structure to my thoughts. I found myself keeping the tone of the posts quite light. Obviously that was as much for me as for my friends and family. My great pal Julia and I conjured up a name for the dying mass inside. TEF – The Evil Fucker.

One day a package arrived from another friend, Anne. Inside the bubble wrap was a pair of Weebles. They were pretty ancient but they brought back the childhood games I used to enjoy. I could hear the advertising jingle from the 70s. I smiled. I tapped the Weeble, watched it wobble, and saw it inexorably stand back up straight. They still sit on our mantelpiece, wobbling away and staying upright. Weebles wobble but they don’t fall down.

If you look at cancer as a whole, funding for research tends to flow to the types that afflict most people, and/or are easiest to treat. It’s a form of the classic utilitarian concept, “the greatest good for the greatest number”.There’s a snag in this thinking if you are someone, like me, with one of the rarest and most aggressive manifestations of this terrible disease. We’re just not that attractive to funders of medical research who, like gamblers in any field, like to place their chips on treatments that are likely to succeed. As a result, funders aren’t interested in tackling GBM because it is so rare and hard to crack. That leads to a dearth of research money to support experimental trials that could lead to scientific breakthroughs, and without those breakthroughs there is no incentive to attract further funding. So it goes.

The “greatest good for the greatest number” approach struck me as a poor way to tackle cancer overall. I used to work with disabled people, and we’d seduce businesses into seeing disability as a business issue by arguing that if, for example, you design your buildings to fit the widest wheelchair, it’s the most efficient way to make sure the doorway works for everyone. Apply that model to cancer. Doesn’t it make sense to tackle the most complex, most aggressive and rarest type first? Wouldn’t that be the quickest and most efficient way to secure better treatments and outcomes for all those with cancer?

Just over a year into my treatment led by the extraordinary neuro-oncologist Dr Fabio Iwamoto, I did a back-of‑the-envelope and calculated that I’m a Million Dollar Woman. My surgery cost something in the region of $130,000. A year of immunotherapy infusions came to $144,000. Electrotherapy cost $250,000 a year; it involves wearing the Optune futuristic headgear, which transmits highly charged particles to create an electric field and attack brain cancer cells. Halfway to a million and we haven’t even added in radiotherapy, chemotherapy, bimonthly MRIs, and a bunch of supplements.

And yet, I’m still in the grip of a disease that has no cure, that relentlessly pursues its victims to the end. So, despite all the cutting-edge and eye-wateringly expensive treatment I’m receiving, courtesy of a good American healthcare plan and a wonderful team of doctors, I’m greedy for more. Which is where OurBrainBank comes in. I’ve founded the nonprofit to turn GBM from terminal to treatable, powered by patients. I’m asking GBM patients using our app to input what they’re doing to stay well – from diet to exercise to supplements – and how they’re feeling, including symptoms and side-effects: language issues, balance problems, tiredness, nausea and so on. All that information will find its way on to the desktops of analysts at two of the world’s leading neuro-oncology research centres. There, researchers will pore over the data in a hunt for what’s working best, what insights we can gather from the reality of patients’ lives so we can improve guidance, connect patients to each other, build a community, enable patients to make better use of their meetings with their doctors, and provide a ready-made pool of candidates to be recruited on to trials. And, perhaps most importantly, to provide insights and evidence that could unlock the serious big bucks we need to find that elusive cure. Our aim is that one day you won’t have to be a Million Dollar Woman to survive.

Later that same year I found myself sitting in a room with about 40 people all looking frightfully important. There were medical experts, heads of pharma giants, representatives from cancer NGOs. They were all wearing smart clothes. I was the only one wearing the Optune electronic helmet.

This was the New York launch event in June 2017 of the Biden Cancer Initiative, the philanthropic scheme Joe and Jill Biden set up after leaving the White House to build on the Cancer Moonshot the then vice-president had run on behalf of President Obama. Biden lost his beloved son Beau to GBM in 2015. It was an opportunity too good to miss. So I joined the line of suits, hustled a little. Deep breaths, be brave, I told myself. “Hi Mr Vice-president, I’m Jessica and I have what Beau had. I’m so sorry he didn’t make it.” That got me a hug.

I went on: “I’m doing fine and involved in setting up OurBrainBank, a whole new approach to moving glioblastoma from terminal to treatable, powered by patients. It so chimes with what you’re saying is needed – collaboration, a sense of urgency – I’d love to share our thinking.” That earned me a second hug and then, with his arm around my shoulder, Biden beckoned to Greg Simon, president of the initiative. “Greg! We gotta hear more about this!”

That was on a Monday. That wasn’t a bad start to a week.

When, in March 2019, Dr Iwamoto broke the news to me that for now he thought my treatment was done, I was profoundly and unexpectedly confused. I had spent over three years staring down death, using every weapon I could command to counterattack. Yet here I was being advised to lay down my arms, even though the enemy might resurface at any time.

I could understand the reasoning. Two years of chemotherapy is more than a year beyond the standard of care for GBM. The immunotherapy I was on is unproven as a standalone therapy for my disease. The hope in this experimental treatment is that it will leave an indelible impression on my immune system – one that will allow my body to attack the tumour of its own accord. But if that is to work, it will have had that effect already, making prolonging the therapy pointless. As for the electrotherapy, the Martian headgear I’d been wearing for months, I was reassured that I had already worn it for longer than the nine months evidenced by research.

I’ve never taken medicine unless absolutely necessary, and my MRIs have – to date – been good. But stopping treatments made me feel as if I was being forced to be a passive bystander to my own disease, waiting for it to regroup and attack me again. What was I to do? It was beyond me, psychologically. I tried enjoying wonderful family holidays. I tried channelling my energies into OurBrainBank. I tried seeking a part-time job. Nothing worked.

It happened on a Sunday in August 2019, at Terminal 3 in Heathrow. Not the kind of location you’d choose as the place to be delivered bad news, surrounded by strangers and stress. We were returning from London to New York at the end of our summer holidays, and were at the gate, about to board, when I sensed a flicker in the corner of my right eye. I immediately leapt for innocent explanations. I was tired. We’d flown from Ireland the day before. It’s always stressful heading home after a blissful break by the sea. Maybe I was dehydrated or energy deprived. Please let it be something innocent like that, and not the dreadful news that deep down I knew it was.

I closed my eyes hoping the flicker would go away. It didn’t. Over email, Dr Iwamoto told me to increase my anti-seizure meds immediately, wait for a couple of hours, and if the eye calmed down then get on the next flight. So that’s what we did.

Less than 24 hours later, we were back in New York, I had had another MRI, and Dr Iwamoto was delivering us the news that I knew he would – the cancer had returned. Within a week of that I was under the knife again, with surgery to remove as much of the newly grown tumour as was possible.

The next couple of months saw me ricochet from doctors’ appointments to surgery to expert opinions, and, between, a bewildering host of emotions. I had known that recurrence was always very likely to happen. GBM is the Terminator of cancers – it never goes away and it never stops trying to kill you. It was as if a shadow that had been hanging over me for the past almost four years, darkening my mood at times, almost imperceptibly but always there, had now broken out into torrential rain.

There. You see. I knew it would do that eventually. All those state-of-the-art machines, all those MRIs showing no evidence of the tumour, all those various treatments trying to improve my situation, and still here I was back at square one. It’s very hard to know how to imagine The Evil Fucker; to know how to think about it. All you can see on the MRIs is a white mass, a splurge of whiteness on the image, and all I can think is: why is this thing trying to hurt me, why does it hate me so much?

Ed and I often indulge in speculation about our retirement. A little house somewhere upstate, a small garden plot for vegetables, space to walk the dog, read our favourite books … I could go on. That’s another cruelty of GBM. It hits, for the most part, in middle age, just when we are getting to a point where we can replace the ambition of youth with a realisation that the half-empty glass might not be so bad.

The flip side of that is that being so ill has sharpened my senses. I can see how I have grown in confidence even while my ability to control my life has diminished. I have met so many people living with this disease, and it has been a humbling experience. We are stripped of our assumptions about health and about life. And while that leads to bitter disappointment, there is a liberation to knowing that all bets are off.

I write this in early 2021. My children have gone from teenagers to young adults during the nearly five years I’ve been living with this disease. All are leading happy lives. They are full of ideas. Ed has become an even better partner than he was before. This family, that I am so lucky to be part of, has demonstrated collective spirit to go beyond adversity.

Happiness has always been my north star and that’s where it remains. But that doesn’t mean I am delusional. With the failure of the latest treatment – an experimental approach that involved injecting my brain with the virus that causes herpes, and the one big shot I had at longevity – it was clear that the odds had moved against me. As I write, I am doing another two-week course of radiation and chemotherapy – back where I began with the treatment that forms the “standard of care”.

And after that? Then what?

I can hardly bear to write the words I am about to. I am going to die. I don’t want to write them because I don’t want to accept them. I’m happy, and my family is happy, and I don’t see why we should have to have that jeopardised. I imagine what the end of my life will be. Not surprisingly, I find it terribly hard. I have no problem talking about my disease and little problem talking about my life ending early because of it. But I shy away from it because it feels terrifying to me. My whole life has been full of options, but suddenly there aren’t going to be any.

The worst part of it is the feeling of loneliness. For these past almost five years I have been on a journey with my loved ones and friends around me. It’s as though we have been through the wars together, holding tight to one another. Now, with my time running short, I am being prised away from those I love and set on another path where they cannot follow me. I am on my own.

Jessica Morris died on 8 June 2021.

This is an edited extract from All In My Head published by Little, Brown Book Group on 9 June. To support the Guardian and Observer, order your copy at guardianbookshop.com. Delivery charges may apply.

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