BETH HALE: Deborah James achieved more in weeks than most do in life

Faced with the enormity of saying goodbye, others might have floundered.

Not .She embraced the last precious weeks of life with an extraordinary gusto; a passion for making a difference that even at her frailest bestowed on her a kind of radiance.

Dressing up in ‘nice clothes’ and ‘popping on some lippy’ helped keep her going, she said.

But what stood out in those final photographs – on trips to Ascot with her brother and Glyndebourne Opera with her husband this month, at Chelsea Flower Show last month holding a glass of champagne in front of a rose, named in her honour, or sitting next to , newly-bestowed Dame Commander medal pinned to her breast – was her smile.A megawatt grin so broad it could light up the darkest room.

And while there will be many tears today from the family to whom she was devoted and the many, many lives she touched through her passion not just for raising awareness of bowel cancer but how to live with cancer, Deborah James, otherwise known as Bowelbabe, achieved so very much to smile about.

What she chalked up in these last short weeks since announcing that she was receiving end-of-life care is more than most of us could hope to achieve in a lifetime: There’s the Damehood, of course, the rose, a book that rocketed straight to the top of the Amazon charts (before it’s even published), a clothing line, even a Lego figurine.

And that’s before you get to the £6.7 million (and counting) raised for vital cancer research through her hastily-launched, but phenomenally successful, Bowelbabe Fund.

Prince William, who visited Dame Deborah at her parents’ home in Woking, sitting with her in the garden in which she wanted to spend her final moments with her family and honouring her ‘tireless campaigning’ to raise awareness of bowel cancer, called her a ‘brave and inspirational woman’.

But, truthfully, there are no superlatives that really do justice to what Deborah James achieved in the time since she was diagnosed with bowel cancer in December 2016.

Last month, as she confronted the new, palliative, stage of her own care, the 40-year-old mother-of-two poignantly insisted she wasn’t brave, writing: ‘I am not brave – I am not dignified going towards my death, I am simply a scared girl who is doing something she has no choice in but I know I am grateful for the life that I have had.’ Others would disagree.Yes, she was unfailingly honest about her fears – her determination to shield her children, Eloise, 12 and ProfileComments Hugo, 14, from her darkest moments; of being alone.

Yet, she was determined to grasp every minute of life with both hands – whether that be going outside to feel the rain on her face or summoning the energy to keep urging people to ‘check your poo’ or to donate to her fund.

As she said: ‘I always said I wanted to slide in sideways when my time is up, with a massive smile, no regrets and a big glass of champagne!Still my intention!!’

Her legacy is truly extraordinary. Last night donations to her fund, which will support clinical trials and research into potentially life-saving developments as well as campaigns to raise awareness, were continuing to rocket, while health bosses have seen tens of thousands of extra visits to a NHS bowel cancer resources page since Dame Deborah launched her fund on May 9.

By focusing on everything Dame Deborah achieved as ‘Bowelbabe’, it’s easy to overlook the 35 years that went before.

She was a very successful deputy headteacher, helping to turn around failing schools, a mother to two young children and rebuilding her marriage to banker husband Sebastien Bowen when her world ‘shattered into tiny pieces, just days before Christmas 2016′.

She spoke and wrote about that moment, and the numerous, rollercoaster stages of the journey that followed, many times in the years that followed, first in her personal blog, then in a column she began writing for The Sun newspaper and then in the award-winning podcast You, Me & the Big C, which she hosted alongside fellow cancer sufferers Lauren Mahon and Rachael Bland.

Rachael sadly died in September 2018, with her husband Steve taking her place in the trio as the podcast continued.

As for Bowelbabe, a superhero name if ever there was one, it wasn’t the creation of a slick marketing team, but rather the alter ego Dame Deborah created for herself when she started blogging after diagnosis; it projected a feeling of strength, she said.

And she needed that strength; she had seen three separate GPs, been told her symptoms were probably IBS and had rounds of tests before the blow struck: Stage 3 bowel cancer, reclassified just weeks later as stage 4 when medics realised the disease had spread to the lungs.

The super-fit vegetarian who didn’t ‘really fit the profile of someone with bowel cancer’, but who had been experiencing symptoms (exhaustion, changed bowl habits, bleeding) for about six months was suddenly facing statistics telling her that her chance of living five years or longer was just 8 per cent.

As she wrote: ‘Five years became this terrifying benchmark in my head.There was nothing I could find to make the data better – and believe me, I searched for it.

‘I mourned all the milestones I would miss; my 40th birthday, seeing my kids go to secondary school, celebrating another Christmas, new decorations on the tree.’ And then those very milestones kept on passing and, in December, the biggest of them – five years – also passed.

There were highs and lows which she shared with her followers (on Instagram they have grown from 495,000 to more than one million in the last weeks alone).She didn’t hide the brutal treatment regime that included countless cycles of chemo, numerous operations (17 tumours removed), new treatments that were emerging only as her own journey with cancer progressed.

She wasn’t embarrassed about poo.‘Check your poo’ was practically her mantra.

Nor did she shy away from any opportunity to throw her arms around life: She appeared on breakfast TV in her bra and knickers, she danced with her children, she ran, she holidayed in the sunshine, she put on her lippy and she determined that whatever was going on in her life, she could make a difference.

Through it all her family were both her driving force and her biggest support team.Covid brought the most unexpected of silver linings in that it thrust them together in a uniquely special way – not that she cosseted her children, instead she wanted them to learn to bake, plant bulbs, watch butterflies, things they could ‘remember doing with me’.

And how she needed the support of her family, these last five months in particular.In January, the five-year milestone reached, she found herself in intensive care, being resuscitated as a result of huge pressure around her liver from the cancer. ‘By some miracle,’ she said, she got through it, but it was gruelling, far more time spent in a hospital bed than in her own. She kept getting sepsis.

In the end, as she told The Times in a tearful but uplifting interview, treatment was ‘fruitless’.‘My body can’t tolerate anything.

‘As devastating as it is, there is almost a sense of release in knowing there is nothing more I can do. My cancer is now just taking over my body’.

It was to her parents’ home in Woking that she gravitated for the last stage – for one thing, her own home in Barnes was a townhouse with stairs she could no longer tackle, but more importantly it meant she could try to avoid her own precious children forever remembering her passing in the context of their family home.Her biggest fear was leaving her children, of not seeing the moments parents look forward to.

Together with husband Seb she made a pact to be honest with them, but to do all in her power to shield them from the darkest moments.‘I want them to have nice memories,’ she said. And they will. Many of them, along with the letters, memory boxes and gifts Dame Deborah busily curated in her last days.

This last task is yet further testament to Dame Deborah’s ferocious drive to live her last weeks to their fullest.She called it ‘death admin’, which makes it sound like she was squaring away paperwork when in fact her ‘admin’ was a to-do list of love – the curation of memories, the funeral planning (sombre black and white ‘because people look good in black and white’, tequila, cremation), setting up the fund and so on.

She admitted one of the most overwhelming of sensations was the tiredness that enfolded her, but she wanted to complete one last episode of You, Me & the Big C.And she did.

She wanted to complete her second book (the first, F*** Cancer: How to Face the Big C, Live Your Life and Still Be Yourself, raised a considerable sum for charity). She did, and How to Live When You Could Be Dead (as she said, ‘oh the irony of the title!’) is in its final edits ready for publication in August.All royalties and £3 per book sold in the UK will go to the Bowelbabe Fund.

There were also conversations to have, not least with husband Seb. The pre-cancer period when their marriage nearly floundered, then the times when, like all partners in life, they bickered about the little things, were all firmly in the past as the ever-present clock in Dame Deborah’s mind ticked away.

He ‘dropped everything’ she said, to be there for his wife 24/7.In one of her last newspaper interviews she admitted that she had given him ‘strict instructions’. ‘I want him to move on,’ she said. ‘He’s a handsome man, I’m, like, “Don’t be taken for a ride, don’t marry a bimbo, find someone else who can make you laugh like we did [together]”.’

He whisked his wife to RHS Wisley, at the crack of dawn, to celebrate the launch of her book.She posted a picture of the pair of them on Instagram, the wording particularly heartfelt.

‘I love this picture of reminding me of vibrant green life all around, despite the sadness of knowing the state of my body inside,’ she said.‘But Seb is an utter rock for me and together we seem to be able to squeeze our hands, swallow the tears and laugh instead.’

He was with her too when Prince William dropped in to bestow a Damehood. Normally these things are announced twice a year at either the New Year Honours or the Queen’s Birthday Honours – but special circumstances decreed all stops should be pulled.

‘I am utterly honoured that he joined us for afternoon tea and champagne, where he not only spent a generous amount of time talking to my whole family but also honoured me with my Damehood.It’s quite surreal having a royal pop in at home, and yes you can imagine the cleaning antics and preparation went off the scale,’ she later told her followers.

Seb, who quietly left his wife’s own very special light to shine, said of the visit: ‘It has brought a piercing ray of light and hope into this, the darkest of times.’ It will doubtless be a memory Dame Deborah’s family will cherish for many years to come.

But for Deborah there were other moments to delight in too: The launch of her clothing range for one, which includes the dress she wore to meet Prince William and a T-shirt bearing the slogan she made her own, ‘Rebellious Hope’ – a mantra expressing her philosophy and a message of positivity for everyone else.

Sipping champagne – hospice staff had to remind her that having opted for palliative care ‘you can drink what you like’ – and wearing a flouncy floral dress during sunny days with her family around her had something defiantly Bowelbabe about it.

‘I cannot tell you guys how this partnership has kept me going through my hospital stays and taken me away from cancer,’ she said of the clothing launch.

‘For years, I always talked about “dressing up to make you feel better”and over recent months all the ups and downs, being in and out of hospital, dressing up in nice clothes and popping on some lippy has made a difference to my journey.’

If a splash of lipstick made a difference to Dame Deborah’s day, how much of a difference did she make to the lives of others grappling with adversity?The stream of letters that found its way to her parents’ home – addressed to ‘Dame Debs, staying with her parents somewhere in Woking’ and the like – suggest it’s something no fund can quantify.

For someone who once said she felt as if she had never ‘done enough’, what she crammed in to the last five years is mind-boggling.

She appreciated it, too.In her final podcast she said: ‘I feel utterly flattered to have had these opportunities. Yes, I would give my cancer up in a second to have a normal life again. But to be able to do it and feel like you have had an impact is kind of one of the best feelings you can have.’

More than once, Deborah said she didn’t want to be a ‘sad story’.And while there will be tears at her passing, ultimately there’s so much to find uplifiting about Dame Deborah James.

As the Duke and Duchess of Cambridge said: ‘Every now and then, someone captures the heart of the nation with their zest for life & tenacious desire to give back to society.@bowelbabe is one of those special people.’

You can donate to Deborah James’ Bowelbabe Fund