She wasted away before our eyes, her limbs shrinking, her hair growing finer, her body weaker, eyes bigger. Yet her brilliant smile remained the same, and she hid none of it. Not the tubes, not the frailty, not the wheelchair, not her jutting bones.
Reflected in the moniker she proudly gave herself, Bowel Babe, Deborah James, 40, never did hide from her cancer, or hide it from the world.
She continued to document the last weeks of her life up until just days ago as she had since her initial diagnosis of Stage Four bowel cancer in 2016, aged just 35, allowing us to see what is so often hidden: the end of a life.
It was all in the hope her honesty might lift the stigma surrounding bowel cancer symptoms and save just one person. Or raise one more pound for her Bowel Babe fund on top of the nearly seven million already achieved - over three million of which she raised within 48 hours of revealing she had ended treatment and was to receive hospice care at home in early May.
To that end, she never shied from the camera, even as her vitality, and strength, ebbed away.
But today, the Dame who was invested by Prince William over tea in her parents’ garden just weeks ago, finally smiled her last. She had outlived her original terminal diagnosis - only 8% in her position are predicted to live for five years - and her more recent, of just days, by nearly two months.
It was hard to believe she would truly go, this astonishingly vital lady in high heels, who gave us all Rebellious Hope - the phrase emblazoned on her fundraising tee-shirts. But at her parents’ bungalow, as she had wished, listening to the “normal buzz” of her family around her, she left the world.
Her spirit never will though. When she talked about her experience, she urged the rest of us to live our lives to the fullest, and her words - sparkling through the teacher turned campaigner’s many interviews, social media posts, books, and BBC podcast, You, Me and the Big C, will live on.
“You have got to have some fun,” she said. “I’m not trying to make cancer look fun, it’s not, but you have to do what you can to get through. There are bad days but you try to have good days as well and make the most of it.”
Deborah, a former deputy headteacher, mother to Hugo, 14, Eloise, 12, and husband to banker Sebastien Bowen, was born on October 1, 1981.
Her mother Heather - aka @bowelgran - regularly stepped in to help her campaigning events, her father Alistair was her ever patient, calm “unsung hero”, pictured brushing her hair when she was too frail to, on Father’s Day.
The pair were instrumental in her life and care post diagnosis.
Deborah attended Salesian School, Chertsey, and studied economics at the University of Exeter.
She then forged a career in teaching, specialising in computer science and working her way up to deputy head at a school then in special mesaures, where she’d juggle 12-hour days with her homelife and “having a laugh”.
She was, by her own admission, a young mum by ‘accident’, falling pregnant with her son aged 24 before she married in 2008. But she never regretted it. That twist of fate gave her precious years of motherhood. She said cancer actually allowed her to learn how to be a mum, to be more present.
She described husband Sebastien as “her rock”, posting on their 13th wedding anniversary: “Sebastien - Thank you for holding my hand in the darkness and dancing me back into the light. I love you. Always.”
She laughed recently she had told him to meet someone new when she’d gone - just not a “bimbo”.
Her original cancer diagnosis came out of the blue.
Deborah was a vegetarian of 25 years, a former gymnast and marathon runner. She was, she admitted, at just 35, statistically very unlikely to get bowel cancer.
For six months she dismissed her symptoms - which she described in detail as bowel movement changes, cramps, blood in her stools, weight loss and fatigue - as IBS and stress.
Her GP dismissed them too, although she held no animosity.
When she was finally diagnosed in December 2016 she was terminal. Her tumour was 6.5cm. She also had tumours across both lungs.
She was told only 34% of women with her cancer made it through the first year; that 8% would make it to five.
“Before I knew it I was staring my cancer in the face and screaming at my consultant ‘I don’t want to die’,” she recalled. She and her husband drove home, Deborah crying uncontrollably, bought the most expensive bottle of wine and drank until she passed out.
Scans followed th next day and in 24 hours she was meeting the surgeon who would remove part of her bowel.
Although terrified, hiding in her bedroom for two weeks, her approach became to talk about it. And campaign.
From a working mum “on autopilot” she grabbed her life.
Depression was not unavoidable, but her alter ego Bowel Babe was picked to help her change the way she dealt with her cancer and she began writing a blog under it.
Opportunities in journalism and TV followed, and she formed her podcast with fellow cancer patients Lauren Mahon and Rachel Bland, who tragically passed away in September 2018 aged 40.
They cut through stigma with their irreverence, talking anything from shopping, to sex, to death.
A dizzying array of sidelines and projects, all with awareness and fundraising in mind, gathered pace.
She published her book F*** You Cancer: How to Face the Big C, Live Your Life and Still Be Yourself in 2018. Following the end of her treatment, she published How to Live When You Could Be Dead, which shot to the top of the Amazon bestseller list.
Her social media posts went viral, including her ‘chemo dances’, when she danced while attached to her pump. She’d sometimes wear heels.
She amassed over one million Instagram followers and became a newspaper columnist.
Becoming a patron for Bowel Cancer UK, she also launched the No Butts campaign and campaigned to have bowel cancer symptoms printed on loo roll packaging. Just this week Andrex became the latest company to agree.
Deborah also produced a fundraising clothing line with fashion brand, The Style.
All of this while her treatment often proved debilitating.
She had 17 tumours removed, faced scores of chemotherapy cycles.
She long outlived prognosis, but early this year her family were told she might not survive the night. Her liver had stopped functioning and she was vomiting large volumes of blood. She needed to be resuscitated because of the pressure around her organ. She even said her goodbyes.
Again, she survived, but sepsis kept recurring and she never left hospital.
In early May, she was told treatment could do no more to prolong her life. She opted for hospice at home care at her parents’ bungalow in Woking, where she could see greenery outside and have her family around.
Her home in Barnes, London wasn’t accessible, and she was keen for her children to be able to go on living in it without memories of her death.
“It means the kids can go back there and not have medical equipment scars everywhere.
“It can continue to be their home without those memories,” she explained.
She said in an interview: “As devastating as it is, there is almost a sense of release in knowing there is nothing more I can do.”
Her final weeks stretched longer than predicted, and Deborah lived them in her indomitable style, admitting she was scared to sleep.
She asked everyone to buy her a metaphorical drink, desperately trying to boost her fundraising while she could. It shot up.
From opera at Glyndebourne, enjoying a trip after hours to the Chelsea Flower Show to see a rose named for her, to donning pyjamas for a sleepover with the girls at home, she found the strength to do her hair and sweep on her lipstick - even though, she said, “it knackers me”. She said she never wanted to look like a cancer patient.
Days after her final prognosis Prince William visited her at her parents’ home to invest her.
“It’s quite surreal having a royal pop in at home,” she said.
We rarely saw her cry, not publicly. Nor did she talk often of tears. But near the end, in a final TV interview, they fell.
She had planned her funeral - a cremation, ashes scattered at the cemetery across the road so she wouldn’t be “lonely”, songs, poems.
Overwhelmed with ‘death admin’, she explained creating memories for her children had become her final task.
“I want them to have letters at milestones, and funny messages: Here’s my advice on your wedding day; what to do on a first date”, she explained.
Deborah’s legacy to the world is vast. We have all learnt from her lead.
Her legacy to her children will be the most precious of all.
