Dame Deborah James’ Bowelbabe fund passes £7m milestone a day after her death was announced

The cancer-fighting charity set up by Dame Deborah James has smashed the £7million milestone a day after her death was announced as Prince William leads tributes praising the fundraiser as ‘an inspiration whose legacy will live on’.

The Bowelbabe fund saw a surge in donations, pushing past £6.8m in the hours after it was revealed the 40-year-old mother-of-two had lost her battle with the disease and has now passed £7million and continues to rise.

In her final weeks, the presenter of the BBC podcast You, Me And The Big C raised the huge amount of cash for research and was made a dame for her ‘tireless’ work improving awareness of the disease.

Dame Deborah became a patron for Bowel Cancer UK following her diagnosis and worked to raise money and awareness of the charity. All donations will be used to fund causes that were close to Deborah’s heart including funding clinical trials and raising awareness of bowel cancer with the help of Cancer Research UK.

Its chief executive Genevieve Edwards said her legacy would live on through her campaigning work and that she had a ‘special gift’ to connect with the public which showed with the sheer volume of donations from the public.

The Duke and Duchess of Cambridge led tributes to Dame Deborah today and called her an ‘inspirational and unfalteringly brave woman whose legacy will live on’.

Prince William cleared his diary and travelled to her parents’ home in Woking, Surrey, in mid-May to perform an honours ceremony at a tea party celebrating her extraordinary life.

The second in line to the throne and his wife had been deeply moved by her campaigning and bravery and paid a moving tribute to the mother-of-two, who is is survived by her two children Hugo, 14, and Eloise, 12, and her husband Sebastien.

In a tweet signed ‘W&C’, the Duke and Duchess of Cambridge said: ‘We are so sad to hear the heartbreaking news about Dame Deborah. Our thoughts are with her children, her family and her loved ones. Deborah was an inspirational and unfalteringly brave woman whose legacy will live on’. 

Dame Deborah used her final message to the world to urge people to ‘take risks, love deeply – and check your poo – it could save your life’ and her bereft family posted a video of her dancing in the sunset following her death aged just 40.

She came to public prominence when she co-hosted the You, Me And The Big C podcast with Lauren Mahon and Rachael Bland. BBC newsreader Ms Bland died in September 2018, also aged 40, from breast cancer.

Her death was announced on Instagram last night in a post that revealed that she was surrounded by her family after months of end of life care at her parents’ house in Surrey. In a poignant message to her 1million followers, it said that Dame Deborah’s final message to them was: ‘Find a life worth enjoying; take risks; love deeply; have no regrets; and always, always have rebellious hope. And finally, check your poo – it could just save your life’.

The message was accompanied by the always glamourous teacher turned broadcaster dancing on a balcony on holiday as the sun set behind her, as friends described her as a ‘warrior’ who ‘taught us how to live and taught us how to die’.

Today there were tributes from all over the world including Boris Johnson, who said: ‘What an inspiration she was to so many. The awareness she brought to bowel cancer and the research her campaigning has funded will be her enduring legacy. Because of her, many many lives will be saved.’

And cancer survivors thanked her for saving them. Teresa Whitfield was watching breakfast TV when she heard Dame Deborah describing her symptoms, which inspired Teresa to go to her GP immediately.

She said today: ‘Without her campaigning I wouldn’t have kept going back to me GP. She triggered something in me. And I’m now cancer free. She did save my life. I can only say thank you. Without her I don’t think I would be here today’.

Dame Deborah’s husband is yet to speak out about her death. But her mother Heather has said: ‘My heart is broken. Love you forever’.

Many shared her final podcast from last month, where she signed off in tears, saying: ‘I suppose that’s it from me. I’m pleased that I have got to the point where I can say it and we’ll see each other again, somewhere, dancing. And until then, please please enjoy life because it is so precious. All I want now is more time and more life. And check your poo. Come on. I can’t leave on any other words’. 

The cancer-fighting charity set up by Dame Deborah was boosted again overnight amid a huge outpouring of support after her death was announced by her family.

In her final weeks, the presenter of the BBC podcast You, Me And The Big C raised £6.75million for research and was made a dame for her ‘tireless’ work improving awareness of the disease.

Dame Deborah became a patron for Bowel Cancer UK following her diagnosis and worked to raise money and awareness of the charity.

Its chief executive Genevieve Edwards said her legacy would live on through her campaigning work and that she had a ‘special gift’ to connect with the public.

She said: ‘Deborah has been an incredible force for good, for our charity and others. Since the day of her diagnosis she has shone a bright light on bowel cancer.

‘She hasn’t stopped in her tireless attempts to raise awareness. She has raised thousands and thousands of pounds for the causes close to her heart and even in the most difficult days personally for her she has never stopped helping others.

‘Her star shone so bright and she will be missed by so many.’

Ms Edwards described Dame Deborah’s legacy as ‘huge’ and said she had never seen so many conversations about bowel cancer taking place. She has shone a very powerful light on it,’ she said.

‘But her warmth and her compassion, her energy and her humour, really connected with people and made something which is often difficult to talk about okay to talk about.

‘That has been her special gift – to connect with others and to have those difficult conversations. And in doing so prompt people to take action, and she has saved countless lives.’ 

The former deputy head teacher turned cancer campaigner, from west London, was diagnosed with bowel cancer in December 2016, and was told early on that she might not live beyond five years – a milestone that passed in the autumn of 2021.

Deborah, parent to Hugo, 14, and Eloise, 12, with her husband Sebastien, was constantly labelled ‘inspirational’ by fans after candidly sharing her struggles on social media, as well as on Radio 5 Live’s You, Me and the Big C, of which she was one of three presenters.

On May 9, the mother-of-two shared a heartbreaking ‘goodbye’ message to her Instagram followers, revealing she was being moved into hospice-at-home care at her parents’ house, while ‘surrounded by family’, because ‘my body simply isn’t playing ball.’ 

While she said at the time that no one knew how long she may live, she recently revealed she was given just days when she was released from hospital last month.

Deborah insisted she had left ‘no stone unturned’ during her search for ‘magic medicine miracle’.

She was made a dame by the Duke of Cambridge at her family home, with William praising her for ‘going above and beyond to make a very special memory’. He later called her ‘incredible’ telling staff at the Royal Marsden who had treated her: ‘She is a brave and inspirational woman.’

Announcing her death last night, her family wrote: ‘We are deeply saddened to announce the death of Dame Deborah James; the most amazing wife, daughter, sister, mummy. Deborah passed away peacefully today, surrounded by her family.’ 

Concluding their Instagram post, the cancer campaigner’s family shared her last words, writing: ‘A few final things from Deborah…’find a life worth enjoying; take risks; love deeply; have no regrets; and always, always have rebellious hope. And finally, check your poo – it could just save your life.’ 

Deborah’s death was announced by her family on Instagram last night. They posted a photograph of the mother-of-two smiling against the backdrop of a peaceful sunset.

‘Deborah, who many of you will know as Bowelbabe, was an inspiration and we are incredibly proud of her and her work and commitment to charitable campaigning, fundraising and her endless efforts to raise awareness of cancer that touched so many lives.

‘Deborah shared her experience with the world to raise awareness, break down barriers, challenge taboos and change the conversation around cancer.

‘Even in her most challenging moments, her determination to raise money and awareness was inspiring.

‘We thank you for giving us time in private as a family, and we look forward to continuing Deborah’s legacy long into the future through the @bowelbabefund. Thank you for playing your part in her journey, you are all incredible.

Tributes flooded in for the cancer campaigner, with Deborah’s mother Heather saying her heart is ‘broken’ following the death of her daughter. Heather James, whose handle on Instagram is Bowelgran, shared a series of photos of Dame Deborah and wrote: ‘My heart is broken. Love you forever.’

Deborah certainly made the most of the weeks she had while in hospice care, going on outings, and making memories with loved ones.

These trips included watching opera at Glyndebourne, enjoying a trip after hours to the Chelsea Flower Show and lunch at the £700-a-night Beaverbrook estate in Leatherhead, Surrey. 

She also had a day out at the races, going to Royal Ascot – just 30 minutes drive from her parents’ Woking home – in mid-June, with family members including her brother Benjamin and his fiancee Ashley Hall.

Writing about the trip on Instagram, Deborah said: ‘Yesterday was really special as with a lot of effort and help I actually made it to Ascot Race Course once again.  I honestly have to pinch myself that I’ve been well enough each day to do something like this. Another favourite I’d had in mind and a fab milestone to say ‘ain’t dead yet!’.’

Before her diagnosis, Deborah was an ambitious deputy head teacher who’d been brought in to turn around a failing comprehensive in Surrey. She also had two young children to bring up.

It meant she and her banker husband of more than 10 years, Sebastien, were always stressed and barely saw each other. ‘It was a classic case of our marriage coming last,’ she told The Daily Mail in February 2020.

Sebastien moved out in 2015 and they embarked on an initially ‘acrimonious’ divorce, both hiring lawyers and starting to see other people. Deborah even went on some ‘hideous’ Tinder dates.

They’d already had the decree nisi when they agreed to counselling, not with any hope of a reconciliation, but simply to be on more cordial terms for the children. Then, to Deborah’s astonishment, the pair began having drinks, then dinner, after the sessions. 

In November 2016, they made ‘a big step’ and got back together, only for Deborah to receive her shock diagnosis soon after.

‘One of the good things about cancer is it makes you reassess your relationship. It’s crunch time. You think: ‘Do I really want to be with this person?’  And if you don’t, then it’s ‘Bye!’ as life really is short. But cancer can also make you realise how special your connection is, and that’s where we are: in a good place,’ Deborah said. 

Deborah was diagnosed ‘late’ with incurable bowel cancer in 2016. She had frequently said that as a vegetarian runner, she was the last person doctors expected to get the disease.

After sharing her experiences on living with the illness on social media, Deborah became known as the ‘Bowel Babe’ and in 2018, she joined Lauren Mahon and Rachael Bland to present the award-winning podcast You, Me and the Big C on Radio 5 Live. 

Bland tragically died of breast cancer on September 5 that year; her husband Steve Bland now co-presents the show.

It had been a difficult year for Deborah, who in previous years had defied the odds by running 5K races and taking part in triathlons.

However, she told Lorraine Kelly earlier this year that she spent ’80 per cent’ of it in hospital receiving treatment after suffering sepsis and a traumatic varicose vein bleed.

In January, she said the ‘trauma’ of nearly dying from the bleed was still ‘very raw and real’ as she returned home after three weeks in hospital. 

Speaking on her You, Me and the Big C podcast with co-host Steve Bland, Deborah said: ‘I was in a state, an absolute state. I was flummoxed. I can’t describe it. I just survived something I never thought… I thought that was it. I thought I was a goner.

‘How do you process that I said my goodbyes, I thought that was it, I thought that was the end of my life, how do you stop reliving that trauma? I did not know what to do with myself.

‘And it’s amazing how you suddenly go back to the things you realise you can do, which is to chat into a microphone or write – whatever your normal coping mechanism are even in a crisis.

‘I’m always somebody that has to have a bit of a purpose so I was like: ‘If I’m going through this I need each and every day to find a purpose’. Obviously the purpose is to live but it also gave me a structure during the day. It gave me something to do (in hospital).

‘I thought I feel so awful, not just physically, but mentally. I thought I knew what rock bottom was. I thought I knew what tough was and I didn’t. I cracked – there’s no embarrassment in saying that. I hit a new low that I never knew existed.’

Posting on Instagram earlier this year, the mother-of-two spoke of enduring the ‘hardest, most heartbreaking and scariest’ period of her cancer battle. She told how her husband watched as doctors fought to save her life after she ‘crashed’ in resuscitation. 

‘A week ago at this time in the evening I nearly died in what was an acute medical emergency,’ she wrote. ‘I’m not ready to discuss what happened yet as the trauma of it all has been incredibly intense – but it’s thanks to an unbelievable team of NHS specialists who worked all through the night and the next day to save me.  

‘I cannot be more grateful. I’m still not out of danger and I have a lot more procedures to deal with. But I’m now out of intensive care. And for the first time felt able to briefly update you.’ 

Sharing a photo of her giving a thumbs up from a hospital bed, she continued: ‘This is me yesterday having just come round from my 3rd operation this week. I have another operation tomorrow.

‘In 5 years of having stage 4 Cancer – this has been the hardest, most heartbreaking and scariest of them all. I’d always prepared for my death, but I wasn’t prepared for something so blindsiding and traumatic to happen. 

‘I can’t quite believe I’m here to write this. A week ago my whole family was praying I’d pull through the night. I’m getting a lot of help and support to come to terms with the trauma I’ve been through. 

‘My family have been incredible. I don’t know how my husband held it together seeing me crash as an army of doctors stabilised me in resus.’

After thanking followers for their support, she added: ‘Do me a favour and go tell your loved ones how much you love them. To realise in a sudden split moment that you are unlikely to see the next day is utterly heartbreaking. Have no regrets.’ 

When discussing how difficult the last six months have been, Deborah said while she was really happy that the ‘big gun chemo’ she endured had slowed her cancer’s growth, which had been ‘on the march’, it had been an exhausting time. 

In the summer, Deborah was told she had an aggressive new tumour that had wrapped itself around her bile duct – requiring a life-saving stay in hospital – and a stent fitted to stop her liver from failing. The stent fitted to stop her liver failing ‘stopped working’ in December. 

She explained to her followers at the time how hopes at having a ‘quick replacement operation’ had turned into a ‘nightmare’. 

She said: ‘I’m now at the mercy of hopefully some super ‘magic medicine miracle’ – but then I always have been, and any chance is a chance right?  All I ever say is all I want is hope and options.’  

Last year, Deborah shared that her cancer, which had been kept at bay by pioneering treatment, was back again.

In January 2020, she had explained that scans showed she had no evidence of cancer in her body at that point – with doctors suggesting she was ‘rewriting the textbook’ – but in April 2021, she revealed her cancer was back again.

Writing in Fabulous, Deborah explained: ‘The results aren’t a s*** show. The good news is my liver, lungs, bowel and chest are all clear. But my cancer has a habit of being awkward and it’s thrown me another challenge, a roadblock we need to navigate around.’

She went on to explain that three years ago she underwent a procedure known as CyberKnife – a highly targeted form of radiotherapy which targeted an inoperable lymph node close to her liver.

The surgery was a success and the cancer became inactive. But while Deborah continued undergoing daily targeted drug therapy to keep the cancer at bay, she told how just as lockdown restrictions in the UK started easing, her cancer ‘wanted in on the party’ and started waking up.

In September 2021, Deborah urged those at home to go to the doctor if they felt something wasn’t right when speaking to BBC News – after admitting she regretted ‘not getting to the GP earlier’.

‘It’s not about scaremongering. It’s about if you’re sat at home right now, you need to know your body and get it checked out sooner rather than later,’ she insisted.

‘I live with incurable bowel cancer and I put off my own diagnosis with bowel cancer. You assume at that age you’re too young to be diagnosed. By the time I was, I had late stage bowel cancer.

‘I’m very grateful to be approaching five years, but I know that I’m smashing every statistic to do that.

‘The key message is actually cancer is survivable. More people will survive 10 years after they are diagnosed with cancer than die from it, but that’s because of where we’re moving in terms of catching things early.

‘The first step in doing that is for people sat at home to recognise it has to start with them and we have to come forward. It’s not putting the blame back, I’ve personally beaten myself up about regretting not getting to the GP earlier.’

Taking to her Instagram page in May to share news she was moving to hospice care, Deborah wrote: ‘The message I never wanted to write. We have tried everything, but my body simply isn’t playing ball.

‘My active care has stopped and I am now moved to hospice at home care, with my incredible family all around me and the focus is on making sure I’m not in pain and spending time with them.

‘Nobody knows how long I’ve got left but I’m not able to walk, I’m sleeping most of the days, and most things I took for granted are pipe dreams. I know we have left no stone unturned. But even with all the innovative cancer drugs in the world or some magic new breakthrough, my body just can’t continue anymore.

‘In over 5 years of writing about how I thought it would be my final Christmas, how I wouldn’t see my 40th birthday nor see my kids go to secondary school – I never envisaged writing the one where I would actually say goodbye. I think it’s been the rebellious hope in me. 

‘But I don’t think anyone can say the last 6 months has exactly been kind! It’s all heartbreaking to be going through but I’m surrounded by so much love that if anything can help me through I hope that will.’

She went on to share news of her Bowelbabe Fund which is being set up in her name, writing: ‘I always knew there was one thing I always wanted to do before I died. I have always over the years raised as much awareness and money for the charities that are closest to me. @cr_uk @royalmarsden @bowelcanceruk.

‘As a result, the @bowelbabefund is being established and I’d love nothing more than for you to help it flourish. Please visit bowelbabe.org for all the info and to donate (link in Bio).’

‘All I ask if you ever read a column, followed my Instagram, listened to the podcast or saw me dressed as a poo for no reason. Please buy me a drink to see me out this world, by donating the cost to @bowelbabefund which will enable us to raise funds for further life saving research into cancer. To give more Deborah’s more time!’

As she finished the post, she wrote: ‘Right now for me it’s all about taking it a day at a time, step by step and being grateful for another sunrise.  My whole family are around me and we will dance through this together, sunbathing and laughing (I’ll cry!!) at every possible moment!

‘You are all incredible, thank you for playing your part in my journey. No regrets. Enjoy life. Deborah.’ 

Deborah had originally aimed to raise £250,000 with her fund – but within hours the total had rocketed beyond that target and within 24 hours it had reached more than £1million.

After seeing the amount raised, the podcast host took to her Instagram stories to say she was ‘utterly blown away’ by the generosity of those who had backed her fundraising drive. She wrote: ‘I never in my wildest dreams thought we’d be waking up to this total 12 hours later. I’m actually crying!’

When she was made Dame Deborah on May 13 for her campaigning, she posted pictures of Prince William with herself and her family on Instagram and has said the visit gave her family ‘so much to smile about in the sadness’.

In a post on Instagram, she said: ‘I believe I may have had the most surreal, mind blowing, humbling five days of my life.

‘My family are being amazing and as emotional as it all is, we are finding so much to smile about in the sadness.

‘I may be getting weaker and more tired each tired having run off pure adrenaline, but my word, 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!!!’

In a personal tweet written by William and Kate, they 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. Her tireless efforts to raise awareness of bowel cancer & end the stigma of treatment are inspiring.

‘We are so sad to hear her recent update but pleased to support the @bowelbabef, which will benefit the @royalmarsdenNHS among others.

‘Deborah, our thoughts are with you, your family and your friends. Thank you for giving hope to so many who are living with cancer. W & C.’

Prime Minister Boris Johnson said: ‘If ever an honour was richly deserved, this is it.’ Later, Prince William praised ‘brilliant, brave and inspirational’ bowel babe Dame Deborah James as he met some of the staff who treated her.

Speaking to patient Lorraine Kimber, 59, from Essex, who is currently undergoing treatment for pancreatic cancer and knows Mrs James well, at the Royal Marsden Hospital, he said: ‘She was incredible, incredible. She was surrounded by her family, we had a lovely afternoon.

 ‘You know she’s had over 100 tumours. Which is unbelievable. I couldn’t believe that. The resilience you have to have to keep going back again, it’s got to be very draining on you.’

He later said ‘She was on amazing form when I saw her. She was joking…because they are a very tight family, very close, you could see that….she was joking that at last she could now drink. 

‘She said it was brilliant. She was ‘triple parked’ and kept on joking about how many drinks she could get lined up in front of her. 

‘She’s realising that being at home is just where she wants to be right now, surrounded by all her loved ones. She spoke very eloquently and very knowledgably about all the cancer treatments, not just her own.

‘She has obviously done her research and was very passionate about making sure the money raised goes straight towards finding more treatments, speeding things up. She was very strong about that.

‘It’s amazing really in the world we live in that still talking openly and movingly about cancer is not as common as it should be. So many people are affected by cancer. 

‘I love Deborah, she’s fantastic. I met her children as well. It was very difficult talking to them about it but they seem to have been talking about the situation a lot. 

‘That’s so important in those moment that the family talk and communicate about it and the children are brought into what is going on.   

‘They seem like such a lovely family, the parents were there was well. It was such a very special moment, it really was. A lot of parents and families I can imagine don’t know how to brooch the subject.

‘It’s so difficult to talk about. But they were very open. I was asked lots of questions. It got me quite moved that they wanted to hear those answers, it was so open. Thank you so much for looking after her so well. She is a brave and inspirational woman.’

In the final weeks of her life, Deborah launched a number of iniatives in order to raise money for her Bowel Babe fund, and continued to speak of the challenges of her cancer battle. 

She raised over £500,000 by collaborating with InTheStyle on a Rebellious Hope t-shirt, while also launching her own clothing collection. Proceeds from the collection are set to donated on to her BowelBabe fund. 

And her new book topped Amazon’s bestsellers chart just 24 hours after it was announced.  For every edition of How to Live When You Could be Dead sold in the UK, £3 will go to Dame Deborah’s Bowelbabe Fund for Cancer Research UK.  It is due for release on August 18. 

The Chelsea Flower Show also unveiled a rose named after her by the Harkness Rose Company. On what is believed to be one of her final outings, she toured the flower show gardens with her husband Sebastien and TV presenter Sophie Raworth. 

She said she hoped that one day, her daughter Eloise might have the rose in the bouquet of her wedding. 

Meanwhile she revealed her final TV appearance would be in an episode of Embarrassing Bodies where she discusses the symptoms of bowel cancer. 

The campaigner filmed an episode of the show earlier this year and has given her blessing for the programme to be aired in the event of her death. 

Just days before she died, she told The Sun she was ‘making sure her children only see her on good days’ as she revealed she felt ‘exhausted’ amid her ongoing cancer battle. 

She added she had felt a ‘deep love’ from her family, saying: ‘I think my family are knackered, they have all been incredible – going above and beyond to look after me and nurse me.’ 

She added: ‘I feel very strongly that I don’t want my kids to see me agitated and distressed. I want to make sure they see me when I’m having a good days.’

Saying the ‘pressure’ on her young children was ‘huge’, she continued: ‘I want them to have nice memories. I don’t want them to take on the burden of having to care for me, massage my legs because I can’t walk. That would break my heart.’

She recalled seeing her grandparents when they were unwell and said she was determined that Eloise and Hugo won’t see that and will have good memories. 

Meanwhile she also revealed how she has been asking the hospice team when she will know ‘it is time.’ She said: ‘I want to know when I need to get my kids back from school, to say goodbye to them.’ 

The mother-of-two also revealed how she has told the team she is ‘very happy’ to be sedated when the time is right. 

You can donate to Deborah James’ BowelBabeFund here. 

With a splash of lipstick and that smile, Dame Deborah James achieved more in a few short weeks than most do in a lifetime, writes BETH HALE

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

Not Deborah James. 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 Prince William, 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 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.’