Dame Deborah James dies, aged 40: the campaigner’s legacy and how she changed the conversation on cancer

Posted by Emilie McMeekan in News

2 years ago

Cancer campaigner and broadcaster Dame Deborah James died on 28 June 2022, aged 40. She will be remembered for an extraordinary legacy, her impact on the national cancer conversation and the BowelBabe Fund she set up in the weeks before her death, raising more than one million pounds in 12 hours. It is now at nearly £7 million.

James was diagnosed with stage four bowel cancer aged 35 just before Christmas 2016 and was told early on that she might not live beyond five years.  A deputy headteacher famous for wearing skirts shorter than those of her pupils, she was an educator at heart – a geek who studied cancer papers and reframed them for the public. A fanatical dancer (whose dream was to be on Strictly Come Dancing), she loved running, tennis, Champagne and France, and she was a columnist for The Sun, not to mention the author of the defiant manual F*** You Cancer.

There was a brief respite in 2019 when she was declared cancer-free – but she has always lived with the spectre of her diagnosis. She never believed she would see her 40th birthday (she did, and Sophie Ellis-Bextor deejayed) and celebrated each unexpected milestone, like seeing her children start secondary school, with a pure, unadulterated joy that gave people a new kind of hope.

The reason she is so much in the public consciousness is for her tireless fundraising and campaigning for awareness of her disease, and for the podcast You Me and Big C which led doctors to say she had changed the national cancer conversation forever. Along with Rachael Bland and Lauren Mahon, the trio adopted for a “warts n’ all” attitude delineating the effects of cancer and their treatments. Bland died in 2018. The podcast was reactivated with her husband Steve Bland in 2019 and most recently featured the extraordinarily devastating and intimate voice notes James recorded from her ICU bed when she nearly died of sepsis in early 2022. You can listen here.

James championed the No Butts campaign with TV “legend” Lorraine, dressed as a poo whenever she could to raise awareness for her disease, which is the second biggest cancer killer, but most significantly was unflinching in her portrayal of the highs and lows of living with cancer. She filmed herself at fashion shows in Ridley maxi dresses, as well as dancing while getting chemo with Limitless Em and when she had a horrible reaction to her meds in 2021. She ran in her underwear with Bryony Gordon and The Scummy Mummies.

James announced the news that she had been moved to hospice care on the 9 May 2022 in typically elegant style. She wrote an Instagram post which read: “The message I never wanted to write. We have tried everything, but my body simply isn’t playing ball. My active care has stopped and I am now moved to hospice at home care, with my incredible family all around me and the focus is on making sure I’m not in pain and spending time with them…In over 5 years of writing about how I thought it would be my final Christmas, how I wouldn’t see my 40th birthday nor see my kids go to secondary school – I never envisaged writing the one where I would actually say goodbye. I think it’s been the rebellious hope in me.

Dame Deborah had a gift for living, but she also showed in her last weeks a gift for dying. Her legacy will not only be the campaigning and the educating, but also the extraordinary events after the announcement that she had been moved to hospice care – in days the fund had raised £5 million and she had been made a Dame, with Prince William going to her parents in Woking for the investiture. She launched a clothing range with InTheStyle (her “Rebellious Hope” tshirt for the brand and the rest of the collaboration has already raised £1 million), finalised her book How to Live With Death which was an immediate Amazon bestseller, and had a rose named after her which was on display at RHS Chelsea Flower Show.

She went to Glyndebourne and the Flower Show and celebrated her brother get engaged, all while recording the lows she was experiencing. Her death was announced at 8.30pm on 28 June with a post on Instagram of her dancing (of course). Her last words to her social media family were “find a life worth enjoying; take risks; love deeply; have no regrets; and always, always have rebellious hope. And finally, check your poo – it could just save your life.”

A brave and beautiful soul who changed the cancer conversation forever, who has left a legacy of funding and who inspired millions to never stop trying. She is survived by her loving family – and will be missed by a legion of fans, including this writer.

By Emilie McMeekan, features director of CORQ.