Heather and Deborah (Image: Heather James)
As Heather James watched her son Benjamin marry his long-term girlfriend Ashley in a light-filled Barbados chapel earlier this month, she felt both the presence and absence of her late daughter, Dame Deborah James. Spirited, fun-loving, brilliant Deborah, known as Bowelbabe, died aged 40, in June 2022, five years after being diagnosed with bowel cancer.
The campaigning mother-of-two and deputy headteacher did all she could to educate others about bowel cancer through her podcasting, writing and television appearances, raising £7million for research when she died.
And her impact was enormous. The family incorporated Deborah into elements of the wedding. Shortly before her death, she had a pinkish white rose – her favourite flower – named in her honour for the Chelsea Flower Show. Today, £2.50 from the sale of each rose goes to the Bowelbabe Fund she started.
Heather dried six rosebuds from the original bouquet produced for her daughter, which Ben had made into buttonholes for the day. “He walked up the aisle with her, which was very emotional,” says Heather, 66. Playing their special part were Deborah’s son, Hugo, 16, an usher and reader, and her daughter Eloise, 14, a bridesmaid.
“Eloise gave everyone a handful of Deborah’s dried petals that could be thrown outside the church as confetti,” says Heather. “I thought, ‘Fly high Deborah, you’re here with us’.”
Heather is speaking over Zoom from the lounge of the Surrey home she shares with husband Alistair, 68, and where Deborah spent her final weeks with her children, her own husband, Sebastian, and her younger siblings, Ben and Sarah.
Today, alone and interrupted only by occasional barks from Winston, Deborah’s beloved dog, she thinks back to the day Prince William visited Deborah six weeks before her death to bestow her with a damehood for her campaigning.
It’s a memory inextricably tied to the wedding. “Deborah had always said Ben looks like Prince William,” smiles Heather.
“William said to Ben, ‘So how long have you been married?’ Deborah laughed so much we thought she was going to fall out of her chair. Ben said he wasn’t married but he did get engaged two weeks after that.
“So Deborah knew they were going to get married and that was lovely.
“The sadness for me was seeing in her eyes when she said, ‘I would love to be at your wedding but I know I won’t be so make sure you do what I do – go all out’. And Ben and Ashley did go all out… I think Deborah was looking down at us, saying, ‘You’ve done exactly what I wanted – a five-day party’.”
Ben, Deborah’s brother, marrying his girlfriend (Image: Sandra von Riekhoff, Divine Day Photography)
It will be two years on June 28 since Deborah died and Heather is still regularly stopped by well-wishers keen to talk about her daughter. “She was a fantastic communicator but also so positive with her life, she found goodness in every day,” says Heather. “Even in the dying aspect, she lived.” Of her grandson Hugo, she says: “He’s very mature and always has been. And Eloise is like her mum. She’s fun-loving.
“Their lives will be changed forever because of mum, because of losing and nursing her through cancer for five years.
“That’s not easy for a child. Seb and Deb were very honest with them and they knew mummy was going to die.
“They’re a unit, daddy and them. They talk about mum and that’s healthy. They will say ‘Mum would like this’, or ‘Mum’s not here so she can’t say no!’
“They are good and I think they’ll be okay. I really do. They’re good, mature teenagers.”
She adds: “They’ve gone through a lot – Deborah’s death was a public thing. We kept her funeral as quiet as we could but it was still public for them.”
The children will be at school on the anniversary – Hugo is taking his GCSEs this summer (“that’s tough for him”) – so Heather will see them and Seb the next day.
“The second year, believe it or not, is harder, because for me I feel sorry that she’s not here to see what’s happening now,” she admits. “I think, ‘Yeah, this is it, you are gone’.”
She thinks of Deborah “every day, every minute. People probably won’t think that but I do”. The grief “doesn’t get any easier”, she says: “It seems as though it was forever ago but also yesterday that she laid in this lounge.
“She came home to die in the first week of May and we thought it would be about five days but it became seven-and-a-half weeks. That was amazing. But I miss her even more.
“I learn to live around the amazing times we had together. My husband and I feel we were honoured and given this child on Earth that had something to do. She did it and left us, and that keeps me positive and going.
“If I felt, ‘Why me, why my daughter, why Deborah?’… I can’t feel that. I believe she was meant to do what she did. And we are meant to keep going.”
Part of keeping going is to continue raising funds and awareness about bowel cancer.
As part of Deborah’s incredible legacy, £13million has now been raised for the Bowelbabe Fund, administered by Cancer Research UK. Heather is hoping to boost this with a minimum £1million donation thanks to a tie-in with for-profit fundraising company Omaze.
The Bowelbabe Fund is the official partner of this month’s Omaze Million Pound House Draw, which closes tomorrow. Up for grabs is a stunning five-bedroom home in Prestbury, Cheshire, worth £3.5million.
Up for grabs: this £3.5million home in Prestbury, Cheshire (Image: Omaze)
“It’s a wonderful opportunity, the money will help so many more people to live longer lives with bowel cancer,” says. Heather.
“The research can make the difference.”
Heather initially wasn’t too sure about the idea – but then her daughter’s voice popped into her head: “Mum, we want the money so let’s get going!” She believes Deborah would be grinning with pride at the fundraiser.
She tries to maximise every opportunity for her daughter’s sake, which is why the family also wrote to politicians this week requesting “a long-term cancer strategy for England” to be published within one year of the election to give “people affected by cancer more time with the people they love”.
Recent analysis from the Bowelbabe Fund showed bowel cancer cases are expected to jump from 42,800 cases a year to 47,700 by 2040 because of our ageing population.
“With new research and drugs, hopefully people will live a much longer and better quality of life [than Deborah],” says Heather.
“What hurts me as her mum is that early diagnosis is the big thing and the awareness that we are getting out there talking about poo will make all the difference. As her mother, I didn’t know about any symptoms of bowel cancer.
“I don’t think I even knew what bowel cancer was. And people didn’t talk about poo. I was brought up not talking about poo, and now I think it’s great that my grandchildren will say, ‘Oh it’s a really smelly one coming out grandma!’
“My sadness is that the awareness needed to be out there many years ago.”
Deborah “didn’t fit the mould” of someone with bowel cancer. Young, fit and a non-smoker, she was a vegetarian who avoided eating processed foods.
But she was also a busy working mum, so when her bowel movements changed, she visited her doctor… and was told she had irritable bowel syndrome.
“IBS is quite common and we accepted whatever one was told,” says Heather. “But now, if she did say she had blood in her poo, is that normal? I would say, no, it’s not normal. Go and get it sorted.”
Deborah underwent further investigations after her diarrhoea and frequent toilet trips developed into weight loss, exhaustion and blood in her stools. Then in December 2016, she was diagnosed with stage-four bowel cancer, aged just 35.
Heather was finishing up a gymnastics coaching session when she saw three missed calls from her daughter. “I tried to phone her back and there was no answer,” she says.
“My husband immediately phoned me and said, ‘Deborah’s been trying to contact you. She’s spoken to me and she has a mass of tumour that is bowel cancer.’
“I said, ‘Oh well, they’ll cut it out and that will be the end of it’ – or so I thought.”
The next day, she realised the seriousness of Deborah’s condition. “But I still honestly thought it would be cut out, six months of chemo, just right for my 60th birthday and we’d be fine,” admits Heather.
Her own sister died of breast cancer and she knew to check her breasts and go for hospital scans. “But bowel cancer wasn’t out there for ladies, or for young people. And that’s what Deborah has changed.”
Whether it was talking about embarrassing symptoms, dressing as a poo emoji or running a 10km race in her underwear, Deborah frequently inspired others with her honesty and humour about living with bowel cancer. Her mantra was always to “check your poo”.
Following her death, the NHS revealed referrals for bowel investigations in England had hit record highs in August 2022. It was dubbed the “Dame Deborah effect”.
Heather hopes research will lead to “kinder drugs” and targeted treatment. Deborah underwent 100 sessions of chemotherapy, leaving her exhausted each time.
Heather talks to her daughter constantly and takes comfort from her famous phrase: “Find a life worth enjoying; take risks; love deeply; have no regrets; and always, always have rebellious hope”.
She’s not sure how the absence of the Bowelbabe Fund’s figurehead will impact support long-term.
“For now, she’s made such an impact that I feel we can continue for as long as possible,” she says. The fund is scrupulously administered, so there is no danger of questions arising, as has happened following the death of the great pandemic fundraiser Sir Captain Tom Moore. Some £10.8million has already been committed to projects across Cancer Research UK, The Royal Marsden hospital and Bowel Cancer UK.
“We have CRUK’s protection and governance, and as a family we take nothing out of it,” says Heather. “People can rest assure that every penny of the Bowelbabe Fund goes where it says it goes to.”
Frequently tired, she remains committed to her mission. “Perhaps we will keep going until we take our last breath because I’m not going to sit there and watch the world go by. That’s not in our mentality either.”
She smiles: “I don’t think Deborah was made on this earth to last another 40 years because she would have exhausted all of us in the meantime.” Heather misses her daughter’s advice, especially concerning fashion – Deborah was famously glamorous in her sparkly dresses with coiffed raven tresses.
“Deborah always made the norm so much fun,” Heather says. “It’s how we end up sitting in the garden at midnight watching a film beneath a sheet that she’d rigged up.
“She always put that special fun aspect into everything – and what a lovely way to live. Of course I’m sad, and of course I miss her but having 40 years of her – even just 40 years – was wonderful.”
Heather James is an Ambassador for the Bowelbabe Fund for Cancer Research UK and is promoting the Omaze Million Pound House Draw, Cheshire II – a new prize draw raising vital funds and awareness for the charity. Enter before midnight on Saturday, April 27 via omaze.co.uk
