This is what Deborah James’ legacy means to me

F*** you cancer. It’s not exactly a phrase I imagined would become intertwined with my life in 2020, but a motto for strength it became.

I first saw it emblazoned on the late Deborah James’ book when my mum arrived in London. She’d hopped on the first plane out of New Zealand (no mean feat in July 2020) when we realised the extent of my sister’s cancer diagnosis, being in the fortunate position to upend her life to come and support us both. I remember seeing her clutching the book tightly, pages earmarked for stories to come back to. The entire thing sort of mangled a little bit, like she’d been holding onto it for dear life. In some ways, I think she had. It became something of a lifeline for us all.

Dame Deborah James, podcast presenter, charity campaigner and writer, died on Tuesday 28 June, aged 40. She was diagnosed with stage 4 bowel cancer in 2016, when she was just 35.

She started an Instagram, Bowel Babe, and began to document her treatment journey through blogs, Instagram posts, articles in national papers and later in her book – F*** You Cancer: How to face the big C, live your life and still be yourself. The book aims to do exactly what it says on the tin: encourage cancer patients to approach their diagnosis head on, taking it by the horns and getting through it with as much humour and joy as possible.

James had been battling bowel cancer for four years by the time my family found ourselves part of the cancer club. She had undergone multiple treatment cycles and surgeries, faced many a medical complication and become well tuned to the roller coaster ride that is cancer. And yet, she was approaching her writing and Instagram with buckets of optimism, proving that a cancer diagnosis is not an endless black hole, sucking all the joy from your life.

Because that is exactly how it felt at first: like we’d been sucked into a lightless vortex. Every happy moment felt like a betrayal. Mornings were heartbreaking because in those bleary, pre-consciousness minutes, you would briefly forget. The moments where my sister was well enough to get out of bed were ecstatic, the ones where she could hardly roll over, rigid with rigours, were some of the most nauseating of my life.

I dug out every horrible story I could find, sure that if I could prepare for the worst then perhaps it would never come. It only succeeded in making things harder, really, in the long term. So, I would go to Bowel Babe’s Instagram account instead, as some kind of antidote to the misery.

Deborah was being treated at the same hospital as my sister, and I would read her writing about how capable the medical team were and it would help me feel more confident that my sister was in the best possible hands. She would post a video laughing with her friends and I would see that putting a smile on my sister’s face when she was strong enough to do so could be possible if I tried hard enough.

But, most of all, she taught me that this diagnosis didn’t mean that my sister was going to drop dead tomorrow. That we could get six years, 10 years, 20 years, heck – maybe even a whole lifetime more out of her. Deborah James showed me that every single moment with my sister was one to be cherished and appreciated, and that staring down the barrel of her mortality was only wasting those moments.

Two years later, my sister has finished her chemotherapy. All of her scans so far have been clear, and she is finally continuing with the life she had planned for herself pre-Covid and pre-cancer.

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When Deborah James announced she could no longer continue with treatment and that she was checking into a hospice in May, I felt like I had been hit by a bus. The all too familiar feeling that pervaded throughout my sister’s treatment – a hand, slowly pressing onto my chest, emptying it of all air – fell swiftly back into place. I may not have known her personally, but James felt like a friend. A guide. A hand to hold when it felt like the world was tipping off its axis.

It is awful. It is heartbreaking. Cancer is a bitch and Deborah James put up one hell of a fight. But she did so much more than that. She inspired countless patients to navigate their diagnosis with dignity and respect for themselves, she helped families like mine to best be there for the people they love, and she showed that sometimes the best thing to do when it all seems too much is to simply take a break and have a glass of wine.

I have no doubt that her legacy will remain for a long time, and the money her fund has already raised for charity and The Royal Marsden will continue to help people battle this horrendous disease. Because there truly is no better way to put it: F*** you cancer.