All in My Head by Jessica Morris review – a candid and defiant memoir about cancer

“I didn’t choose cancer. Cancer chose me.” None of us know what we will do when we’re given the sentence of our death. For Jessica Morris, the sentence came too early, when she was in her early 50s, strong and vigorous, her three children not yet adults, her future seeming to lie clear and unimpeded in front of her. And it came out of the blue: hiking with friends in the Catskills in upstate New York in 2016, she began to feel strangely breathless and “inexplicably odd… odder still… struggling to call out during a nightmare… Agh…” The violent seizure she then had was her body’s “suicide mission” revealing itself.

Morris, a communications consultant, had glioblastoma, an aggressive brain tumour that is terminal, and whose median survival rate is 14 months; only 5% are alive after five years. The hourglass had been turned and the sands of her life were running out. All in My Head – written in a voice that is loud, defiant and beautiful, and that demands to be heard – is her account of what she did when she was given her sentence. It is a narrative that can only have one end: I picked up the book, whose back-cover photo shows her chemo-bald and vivid, knowing that Morris died last year; the afterword is by her husband, the journalist Ed Pilkington. The Evil Fucker, as she calls her disease, had got her, and her story is over.

But not over without a joyful, stubborn, rambunctious fight – which is not just a fight to the death for her own impossible survival, but also for others with GBM, whose predicted outcomes are so dire. She begins with her own case, the “steepest of learning curves”, as she puts it in blogs she writes for her family and friends, where she is first offered the “standard of care” for her tumour; that is, the treatment recommended for anyone diagnosed with glioblastoma, surgery, followed by chemotherapy and radiotherapy. Morris feels she is not “a standard of care” sort of person. She seeks a second opinion and is told that it would be “sub-optimal” (a phrase she loathes for the way it dresses up a truth she wants to face squarely, chin up) and that there are unproven forms of immunotherapy she can try.

When she fails to persuade the two doctors to collaborate, she becomes aware of a chasm between patient and doctor. Forced to choose between two world experts, she choses the unproven, the risk-taking. “I am so cutting-edge,” she writes to friends with a jaunty valour that catches at the heart. She is up for every treatment on offer. She goes under the knife. She has chemo. She takes part in a trial involving being injected with herpes virus. She wears an electronic helmet attached to a backpack that makes her look like a terrorist (in Central Park two teenage boys tell her this is cool, and she agrees that it is). She slides under MRI machines and listens to music in the silent darkness, attempting not to be consumed by lonely terror. She tries to live in the moment, and there are days and weeks when she feels joyful, other days when her defences crumble and she allows herself to wonder if she is “beating this disease, or running down the battery of life”. Sometimes she feels quite healthy; at others, ghastly. Her skin itches and is sore; she breaks out in hives; she is sick. Her body, which she has always relied on, begins to betray her.

The outcomes of GBM are so terrible that they have discouraged pharmaceutical companies from seeking a cure. Further, because it’s a rare form of cancer, it lacks significant data for scientists to work with and is therefore under-researched. Morris decides to change this by harnessing the knowledge of those who live with GBM. “The patient knows best,” she declares, and with characteristic determination she sets up an app called OurBrainBank – a patient community combined with the latest interactive technology where people may log symptoms and share data. Its tagline is “powered by the patient”; its aim is to make GBM treatable, not terminal.

Morris chooses to make her extraordinary journey – which lasted five years, well beyond the median – into an explicit battle. She calls herself General Morris and her strategy is to fight the aggressor aggressively, using every opportunity to counter-attack. Sometimes she feels victorious, at others she has a sense of defeat; her cancer comrades who die are war heroes. I have always felt anxious about the fighting metaphors around illness, as if survival comes because of heroic endeavour and death is a failure. But reading All in My Head, I could see how for someone like her – a worker, strong-willed, optimistic, bloody-minded, brimming with purpose, heart “fully stoked” and “nobody’s fool” – it was a matter of staying alive not for ever, but day by day and week by week: alive to life, in control of her destiny, making choices for herself, brimful of endeavour. When she first hears the diagnosis, she spends many minutes gazing at her reflection in the mirror, facing up to herself, staring down death, filling herself with “sober strength” until she can say: “I choose to take this on.” When she is advised to stop chemo, she feels passive and bewildered. She writes blogs and this book to be in charge of her own story.

In August 2019, the “inexorable logic of the disease” caught up with her. One day, in an airport after a visit to her family in London, Morris feels a flicker, a flutter, in the corner of her right eye. There is a splurge of whiteness on the MRI. The Evil Fucker is coming for her. The last chapter in the book is set in an imagined future, when she is no longer there but those she loves are, remembering her, raising their glass in toast to Jessica who is long gone. And then this candid, fresh, funny voice stops.

• All in My Head: A Memoir of Love, Life and Patient Power by Jessica Morris is published by Fleet (£16.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply