All in My Head by Jessica Morris review – an attempt to make the incurable treatable

In 2016 Jessica Morris was on an annual hiking weekend with friends in upstate New York when she started to feel all wrong. Being out of breath was nothing new since she was in her mid-50s, and exercise had never been her thing. What was her thing, though, was talking – and now, weirdly, she couldn’t do that either. The words were all bunched up in her head and refused to launch themselves on to her tongue. The next thing she remembered was waking up in an ambulance, her face twisted into a permanent grin, which was strange, since she wasn’t feeling remotely happy.

Within days Morris was diagnosed with a brain tumour, a glioblastoma. GBM typically rips through patients in 14 months, leaving only 5% alive at the end of five years. It is the disease that took the lives of the MP Tessa Jowell, Senator John McCain and Beau Biden, the president’s son. And, when Morris gets a definitive diagnosis, she knows that it is the one that will take her off, too: “in a nanosecond, my life had gone from one of smooth, predictable joy to one of unimaginable terror”.

All in My Head is not a misery memoir, however, nor is it a cancer diary. Instead, it is the story of what Morris, a British-born PR executive married to a Guardian journalist, did next. Harnessing her professional networking skills and a fair dollop of bloody-mindedness – she renames her tumour “The Evil Fucker” or TEF – Morris sets out to understand why GBM has such appalling survival rates and what, if anything, can be done.

The first clue comes when her distinguished oncologist tells her that existing treatments are “sub-optimal”, which is a fancy way of saying not very good. The reason, perhaps unsurprisingly, lies with the marketplace. Big pharma has never really wanted to tangle with a disease that has such poor outcomes – since patients don’t last very long, the possibility of making a profit from them is low. Then there is the fact that GBM is – mercifully – relatively rare. Fewer patients mean less data, and data is what scientists live and breathe if they are to have a hope of developing better treatments. It is for this reason that there have been no significant developments since 2005.

In between trips to the hospital for the standard protocol of chemotherapy and radiotherapy, Morris signs up for any medical trials going. These include being injected with the herpes virus to see if it will trigger a useful immune response (it does, but only up to a point). Then there is the oddly named Optune, an electronic helmet attached to a backpack, which makes the wearer look like a terrorist, or at least that is how Morris interprets the suspicious glances on the New York subway.

Perhaps Morris’s greatest achievement, though, is setting up OurBrainBank, an app that invites people living with GMB to log their symptoms and share their treatments. The aim is not therapeutic, although there is deep comfort to be had from knowing that you are not alone. OurBrainBank’s chief purpose is to collect sufficient data to whet the appetites of neuro-oncological research centres and pharmaceutical companies. By forging links between doctors and patients around the world, Morris’s hope is for GBM to move “from terminal to treatable, powered by patients”.

Within months of its foundation, OurBrainBank had attracted enough funding to ensure its survival. Morris died in June 2021, having managed to last a remarkable five and a half years since that fateful hike in the Catskills. What she leaves behind is not just a compulsively readable and uninhibited memoir, but an example of how ordinary people can get together to tip the balance and change things when the stakes are sufficiently high.

All in My Head by Jessica Morris is published by Fleet (£16.99). To support the Guardian and Observer order your copy at guardianbookshop.com. To buy a copy for £14.78 go to guardianbookshop.com

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