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SHINING LEGACY
Dame Deborah James’ £16m legacy 2 years on from death as family tell of pride at how she continues to help save lives
In the last seven weeks of her life, Deborah achieved more than most people do in a lifetime
EVEN in death, Dame Deborah James’ light continues to shine bright.
It’s been two years since her loved ones have been able to feel her physical touch, hear her laugh and listen to her bark ‘Check your poo’ at anyone who would listen.
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Yet, everyday they are reminded of the brave, sequin-clad, fearless cancer campaigner - and are inspired by her legacy.
Sun columnist Dame Debs died on June 28, 2022, five years and seven months after she was diagnosed with stage 4 bowel cancer.
The Bowelbabe Fund that she established five days after returning to her parents’ home in Woking to die now stands at a staggering £16million.
“It’s a testament to her incredible spirit, her fierce campaigning and drive to make a difference that she continues to have such an impact in death,” her parents Heather, 66, and Alistair, 68, tell The Sun on the second anniversary.
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“We are incredibly proud of everything she achieved in her short life and the fact that she continues to help save lives.”
The 40-year-old died holding her husband Sebastien’s hand and feeling his kiss on her head.
“I told her how much I loved her, that I would look after the kids and the last thing I said to her was that I was so proud of her,” Seb, now 44, told The Sun at the time. “Then she slipped away.”
Dame Debs’ parents Heather and Alistair and siblings Sarah, 40, and Ben, 33, were also by her side, with Wimbledon on in the background.
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“I felt a wave of relief when she died,” says Heather.
“The moment I had been dreading the most in the world had happened, and despite our fears it was peaceful.”
Dame Deborah James family call for earlier cancer diagnosis, as dad Alistair says 'it should have been me'
Two years on and Heather says she is in a “much better place” than the first anniversary of her eldest child’s death, when she was plagued by panic attacks.
“If you don’t love, you don’t grieve, and the depth of my grief reflects the depth of my love for her,” Heather says.
“Nobody wants their child to die, I will never not miss her.
“But I had a choice, I could live the rest of my life in one of two ways.
“I could wallow or I could choose to do what Deborah would want, and live my life making sure that I enjoy my life.
'Last gift'
“I choose to be so grateful for the years I got with her, all the precious memories we shared and I choose to focus on how proud I am of her, what she achieved and everything that she left behind.
“Deborah’s death has given me a new perspective on life, it was her last gift to me - and to us all.”
Heather is reminded of her bright, beautiful daughter anytime she finds herself doubting a decision, or questioning if she should do something.
“For me, it’s when I’m buying a new lipstick and I can’t decide between two colours,” she says, laughing.
“I can always hear Deborah telling me to just buy both. She is always there pushing me to go ahead and do the things I want, I can hear her telling me, ‘don’t wait, live your life right now’.
“The truth is none of us know how long we have left, life is short so I owe it to Deborah to enjoy mine.
“In the same breath, I feel immense guilt that I am here to enjoy my life when she isn’t, but I know she would hate me feeling that way.”
For dad, Alistair, it’s all the day-to-day events that crop up that make him stop and think of his daughter.
The signs of bowel cancer you need to know - remember BOWEL
- B:Bleeding
There are several possible causes of bleeding from your bottom, of blood in your poo.
Bright red blood could come from swollen blood vessels, haemorrhoids or piles, in your back passage.
Dark red or black blood could come from your bowel or stomach.
Blood in your stools is one of the key signs of bowel cancer, so it’s important to mention it to your doctor so they can investigate.
2. O: Obvious change in loo habits
It’s important to tell your GP if you have noticed any changes in your bowel habits, that lasts three weeks or longer.
It’s especially important if you have also noticed signs of blood in your poo.
You might notice you need to go to the loo more often, you might have looser stools or feel like you’re not going enough or fully emptying your bowels.
Don’t be embarrassed, your GP will have heard a lot worse! Speak up and get it checked.
3. W: Weight loss
This is less common than the other symptoms, but an important one to be aware of. If you’ve lost weight and don’t really know why, it’s worth mentioning to your GP.
You may not feel like eating, feel sick, bloated and not hungry.
4. E: Extreme tiredness
Bowel cancer that causes bleeding can cause a lack of iron in the body – anaemia. If you develop anaemia you’re likely to feel tired and your skin might look pale.
5. L: Lump or pain
As with lots of other forms of cancer, a lump or pain can be a sign of bowel cancer.
It’s most likely you’ll notice a pain or lump in your stomach or back passage.
See your GP if it doesn’t go away, or if it affects how you eat or sleep
“It might be an egg hunt at Easter with the children, watching the cricket on TV or Wimbledon, the things we loved doing together, that’s when I really think about her and the wonderful moments we’ve shared.”
In the last seven weeks of her life, with her family by her side at her parents’ home, Deborah achieved more than most people do in a lifetime.
Dubbed ‘death admin’ by Debs, she finished her second book, launched a charity clothing line with In The Style, had a rose named after her, received her Damehood from Prince William and secured a deal with Tesco to get the symptoms of bowel cancer printed on their packs of toilet rolls.
But perhaps her greatest achievement in those final weeks was establishing her Bowelbabe Fund for Cancer Research UK, to fund research in the hope of one day finding a cure and sticking two fingers up to cancer for good.
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The £6.7million she raised before she died represented a dream that she had held on to ever since her diagnosis - that she could help others avoid her fate.
In the five-and-a-half years she wrote her Sun column, Things Cancer Made Me Say, Deborah repeated time and again that she was driven by a desire to leave this world a better place for her children, Hugo now 16, and Eloise now 14.
“I want them to live in a world where they don’t need to worry about cancer - and I want them to know I did everything I could to make that happen for them,” she wrote in a column in 2019.
“I want them to be proud of me, for making an impact and raising awareness of cancer and its signs and symptoms.”
Two years on and Dame Debs’ children have so much to be proud of.
She would be thrilled to know so much money has been raised in her honour
Heather
The Fund’s total now stands at a whopping £16million - a sum, Dame Debs could once only have dreamed of.
The first £4million was allocated to fund five different projects, including work to develop an AI blood test to diagnose cancer early, a mathematical study to understand how cancer spreads and a study to investigate the role the gut microbiome might play in causing bowel cancer.
It also helped fund a new interventional radiology machine at The Royal Marsden, the hospital where Deborah was treated.
In March this year, the family announced that a further £5million has been earmarked to help fund a global study to look at how risk factors like obesity and poor diet, as well as environmental and social factors lead to cell changes linked to early-onset bowel cancer.
“She would be thrilled to know so much money has been raised in her honour,” Heather says.
“But I know in her next breath she would be saying, ‘let’s hit £20million by Christmas’.
“I can see her jumping around and coming up with new, wonderful ideas to drive more donations - she never gave up.
“To her it wasn’t about the money or the number, it was about the lives she knew that money could save.”
Inspired by their daughter, Heather and Alistair have vowed to continue the work she started, raising awareness of a disease they knew so little about until Deborah educated them, and millions of others.
'She sparkled'
EVERY time it rains I think of Dame Debs.
Not because she complained about it, or hated it - far from it. When the heavens opened she embraced it, it made her feel alive.
In the weeks before she died she told me, ‘go dance in the rain, feel it on your face, you never know when it might be the last time’.
It’s one of the many lessons she taught me.
I edited Debs’ Sun column, Things Cancer Made Me Say, for five years. We first met when I interviewed her in February 2017, just after she was told the 6cm tumour in her bowel was incurable cancer.
Deborah wasn’t hard to fall in love with, she sparkled. Her wicked sense of humour and bonkers ideas coupled with her innate understanding of people, made her an infectious person to be around.
We spoke most days, discussing ideas for her columns, her hopes and dreams and the things that scared her the most.
What Deborah did in the five years she lived with cancer is nothing short of remarkable.
Through her Sun column, her podcast You, Me and the Big C, countless appearances on national television, two books and posts, reels and posts on social media she achieved what cancer charities had been trying to do for decades.
She totally changed the conversation - she made it acceptable to talk about poo in public, she broke down the stigma and in doing so she saved countless lives, she still does.
We discussed the idea of Debs dying many times, but I could never really get my head around a world without her in it.
I miss her, I think about her all the time, whenever it rains, when I drink a glass of rose in the sun and always when I book a holiday, especially at the last minute.
I’m proud that two years after her death she is still having such an impact on people’s lives.
While I am in awe of all the things she and her family have achieved through the Bowelbabe Fund, I am not in the least bit surprised.
Deborah’s bright, glittery light was far too bright to ever dim, her whirlwind was too powerful.
I may not get to message her or call her anymore, but I regularly think about what she's taught me.
It’s hard to sum up, but best left to the Dame herself: “In the end, you only regret the chances you didn’t take.
“Don’t put stuff off, don’t regret not seeing your loved ones.
“Get up and live in the moment, and make those memories now - and don’t forget to check your poo, it might just save your life.”
By Lizzie Parry
“As her mum, I will always be haunted by the question, ‘could it have been different?’,” Heather says.
“I wish I had known more about the symptoms of bowel cancer when Deborah was diagnosed.
“I didn’t have a clue, none of us did. People didn’t talk about their poo back then.
'Life lessons'
“If there had been someone like Deborah shouting about bowel cancer symptoms from the rooftops when she was first poorly, she might have been diagnosed earlier.”
Early diagnosis is just one of the vital messages Dame Debs repeated over and over again, knowing all too well that the sooner you catch most cancers, including her own, the better a person’s chances of survival.
Heather says: “She was passionate about empowering people to be their own advocates, to remind people that you know your body better than anyone, so keep going until you get an answer.
“Those messages were always at the heart of her campaigning, and we are really proud to repeat them, over and over again.”
It’s why the whole family joined forces with Cancer Research UK earlier this year to call on the leaders of all political parties to take action to give more cancer patients precious time with their loved ones.
She taught us all how to live, and we are all doing a good job of following her lead
Heather
In a letter to the leaders of all political parties Heather, Alistair, Seb, Sarah and Ben urged the next Government to commit to a long-term cancer strategy to “drive earlier diagnosis and reduce inequalities in access to treatment and care”.
Dad Alistair says: “It’s fitting that this anniversary comes just a week before the next Government will be elected, and we reiterate our plea to the leaders.
“Early diagnosis saves lives and we need a comprehensive plan in place to ensure that everyone has access to the care they need, when they need it.”
While Heather and Alistair are comfortable continuing Debs’ work in the public eye and on social media, Seb, Sarah and Ben are involved in running the Fund behind the scenes, while Hugo and Eloise have their say on the projects the money funds.
“We all play our role, and have all found roles that play to our strengths,” Heather explains.
“As a family, we promised Deborah that we would continue what she started, and for us knowing we are able to do that has been a great comfort.”
Today, each member of the family will remember Deborah in their own ways.
Heather and Alistair have chosen to spend the milestone in one of their favourite places, Sandbanks.
“It holds very special memories for us all,” says Alistair.
“Heather and I spent summers here as teenagers, and we brought the children all here for summer holidays on the way back to Dorset to see our families, when they were all young.
“Three years ago it was one of the last holidays we shared with Deborah.”
Seb and the couple’s children will be together watching Eloise perform in a school show.
“The children are doing really well, they are growing up fast and Hugo has just done his GCSEs,” Heather adds.
“We are so proud of them both. Looking back at family photos recently, they were so little when Deborah was diagnosed, Eloise was seven and Hugo was nine.
“They can probably only really remember mummy having cancer.”
In a Sun column Debs wrote years before her death, she said of her kids: “I want them to remember me as being passionate about life and living – and passionate about them.
“I want them to recall their quirky, crazy mum who danced with them in the rain, drank wine and laughed when she wanted to cry.
“I want them to grow up to have no regrets, put their health first, live in the moment and to make the most of every opportunity.”
Heather says her daughter would be proud of how her children are coping - and the example she set them.
“Of course the years before her cancer were better, but in those last five years she really taught us all, especially the children, the value of living life to the fullest,” she adds.
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“The rich memories and life lessons she gave them in those years and the legacy she has left them is incredible.
“She taught us all how to live, and we are all doing a good job of following her lead.”
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£16m RAISED: WHERE MONEY IS GOING
The Fund’s total now stands at a whopping £16million - a sum, Dame Debs could once only have dreamed of.
The first £4million was allocated to fund five different projects, including work to develop an AI blood test to diagnose cancer early, a mathematical study to understand how cancer spreads and a study to investigate the role the gut microbiome might play in causing bowel cancer.
It also helped fund a new interventional radiology machine at The Royal Marsden, the hospital where Deborah was treated.
In March this year, the family announced that a further £5million has been earmarked to help fund a global study to look at how risk factors like obesity and poor diet, as well as environmental and social factors lead to cell changes linked to early-onset bowel cancer.
“She would be thrilled to know so much money has been raised in her honour,” Heather says.
“But I know in her next breath she would be saying, ‘let’s hit £20million by Christmas’.
“I can see her jumping around and coming up with new, wonderful ideas to drive more donations - she never gave up.
“To her it wasn’t about the money or the number, it was about the lives she knew that money could save.”
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