Every so often someone comes along who changes the world a little. Dame Deborah James, who died in June last year, was one of those people. When the computer science teacher was diagnosed with stage IV bowel cancer it became her mission not only to educate people on how to look out for the ‘brown’ cancer but also, as a by-product, to appreciate every little thing life has to offer.
Now a film has been made about her life for the BBC – Deborah James: Bowelbabe In Her Own Words – and it is one of the most heartbreaking and yet life-affirming things you will see this year.
Deborah was someone who lived life to the full, grabbing it with both hands even as she knew time was slipping through her fingers. She would dance after chemotherapy, skip in the rain, post ‘poop’ emojis, anything to get her message heard.
She documented it all on her Instagram page which had nearly one million followers. In one of the first scenes of the short movie, Deborah is filmed going for yet another bout of chemotherapy, her hands shaking as she rattles around a huge bag to find her lipstick.
“Any cancer patient has so many drugs – I have to take them all the time. It’s like this relentless everyday routine,” she tells the camera. “My bag is also full of make-up because it hides the fact that I look like I had a raging temperature of 40 degrees an hour ago.”
She already knew she didn’t have long to live but was determined to share every last minute.
“Over the last five years I’ve campaigned, I’ve spoken about awareness, and I’ve shared my story for a reason,” she says. “The laughs, the giggles have been about showing you can live with cancer but, ultimately, what I really want to happen is that I don’t want any other Deborahs to go through this.”
Diagnosed with incurable bowel cancer in 2017 aged just 35, the mother of two became a media phenomenon.
Through her books, blogs and podcast (You, Me and The Big C: Putting the Can in Cancer), she inspired millions of people – including William, the Prince of Wales who made her a Dame just before she died and last week helped spread the news her Bowelbabe fund had raised an incredible £11.3million for Cancer Research UK. “An incredible legacy which continues to impact so many,” he wrote on Twitter. “We couldn’t be more proud of the work of the @bowelbabe fund.”
The producer of You, Me and the Big C is Mike Holt. “Deborah’s message from beginning to end was letting people know about bowel cancer,” he says.
“She would laugh at how it was not the cool cancer, it was the brown cancer; it was an embarrassment. And we know she had a massive impact in teaching people about it.”
Mike helped create the podcast in 2018 with Rachel Bland, along with Deborah and Lauren Mahon – three women in their thirties who all had cancer. It was an immediate hit – no subject was off limits – and won numerous awards.
But just a few months after it was created, Rachel died of her breast cancer. “For all of these women, one of the things they wanted to do was help people, and that wasn’t just through the podcast,” says Mike, who has made a special edition of the podcast with Deborah’s friends and family to accompany the film.
“We know that people did check themselves after she listed the symptoms. There are people who are alive today because of her. And I know so many people – strangers – who messaged Deborah on Instagram. She always got back to them.
“After she died, more people came out than we could ever have imagined, saying they’d chatted to her, even when she was very sick. She had this boundless energy to want to connect with people, advise them, and make sure they weren’t suffering too badly if they were on their own.”
The film, which comprises family photos and videos, elements of her podcast, messages and videos to friends and footage from the last few months of her life, was the brainchild of BBC Storyville commissioner Lucie Kon. Lucie got to know Deborah after her own brush with cancer.
“I was diagnosed with breast cancer just before the first lockdown and I didn’t know anyone who had cancer,” she explains.
“I started listening to You, Me and the Big C and following all the presenters on Instagram. I loved what she was doing – all the memories she was making for her kids and most of all how fun she seemed. I was conscious of the fact that, while I was still having treatment, the pandemic meant [treatment] had stopped for some people and I wanted to make a film about it for Panorama which became Britain’s Cancer Crisis.
Lucie sent Deborah a message, inviting her to be in the film. Deborah agreed but stressed she didn’t want to be portrayed as a victim. Instead she was the reporter on the film. The two women became firm friends.
“Deborah was a natural and, even though we were making a film about people dying, it was a film with a lot of laughter,” Lucie remembers. “She kept saying, ‘Where you’ve got options, you’ve got hope’ and that wasn’t something I had realised before.
“Before I met her, I was so scared I was struggling to sleep. But then you meet someone like her and you realise you need to live a little instead of sitting around worrying.
“That felt so powerful and I think that is the message she gave to everyone around her.”
After the documentary aired, Deborah was keen to make a second one to demonstrate how science could be used to cure cancer, but at the same time she was becoming more and more unwell as she began to run out of options.
“In January 2022 she nearly died and did a series of podcasts from hospital when she thought she was dying,” says Lucie.
“I remember walking down the street, listening to them thinking, ‘We need to turn it into a film’. And that’s what we started doing until she was too ill to finish it.”
Even towards the end, last May, Deborah was inspiring her friends.
“She sent all her friends a message on the Thursday saying she was dying, but by the Monday she’d launched the Bowelbabe fund and gave everyone something to do,” Lucie explains.
“I knew I had to finish the film because, at the heart of the science message that she wanted to put across, is the funding that it requires.”
The last few scenes of the film are heart-breaking as Deborah is filmed making her final podcast with Mike, remembering her late fellow podcaster Rachel Bland and describing her feelings about her own imminent death.
“I am amazed at how tired I am,” she says. “I’ve had five years knowing this will happen to me and it’s still shocking. I am currently in a state of doing death admin which I remember distinctly Rachel talking about – she is always in my mind.
“How brave she must have been because I don’t feel that brave.
“Maybe she’ll meet me on the other side and she’ll be like, ‘Wow, better late than never!’. I suppose that’s it from me. I can’t believe it.
“We’ll see each other again, somewhere, somehow dancing. And until then, please, please just enjoy life, because it is so precious. All I want right now is more time and more life.
“Oh, and also, check your poo.”
Deborah died on June 28 last year aged just 40, leaving her husband Sebastien and her teenage children Hugo, 15, and Eloise, 13, and an astonishingly courageous legacy.
And, as the BBC documentary demonstrates, that legacy lives on today.
- Deborah James: Bowelbabe In Her Own Words is on BBC Two on April 17 at 9pm. To donate, visit Bowelbabe.org
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