Dame Deborah James' daughter Eloise is "resilient" and "brilliant" says grandma Heather ahead of new campaign

Dame Deborah James' daughter is launching a new campaign in honour of her late mum, a trailblazing campaigner for bowel cancer awareness known as @bowelbabe. Eloise, 15, appeared on ITV to launch the 'No Butts' campaign and continue her mum's legacy. Here, Dame Deborah's mum and Eloise's grandmother, Heather, explains how resilient Eloise and her brother Hugo have been, and shares what the whole family have learned since Deborah died in 2022.

"I remember taking my daughter, Deborah, to her first chemotherapy treatment in 2017, when she was 35 years old. As we walked on to the ward, a woman said, ‘How lovely that you have your daughter here to support you.’ Deborah was young, so she’d presumed it was me who was having the treatment.

Suddenly, I thought, ‘It should be me, not Deborah, going through this.’ I was her mother, but I couldn’t protect her from this. Neither could her dad, Alistair, and it was so hard to see her going through chemotherapy knowing we couldn’t take that on for her. Of course, Deborah’s diagnosis was also incredibly tough on her husband, Sebastien, children, Eloise, now 15, and Hugo, now 17, and so many others who knew and loved her.

Deborah lived with incurable bowel cancer for five years before she died in June 2022, aged just 40. I like to say she led a triple life, because right from when she was a little girl, she enjoyed every moment, and she continued finding the joy in everything even after her diagnosis.

I had 40 brilliant years with Deborah, but of course I wish I could have had more. She taught me just how precious life really is.

Most people will know Deborah as Bowelbabe on Instagram, and for hosting the You, Me And The Big C podcast. They’ll also remember her inventive ways to break down barriers and get people talking about the warning signs of bowel cancer – like running round dressed as the poo emoji to show we shouldn’t be embarrassed to talk about taboo topics when it comes to our health.

In true Deborah style, she could always find the fun in any situation. When she had to go for chemotherapy sessions, she’d make up dances and share the videos online – which went viral. She brought joy to what was otherwise a scary and unsettling process, and inspired so many.

The diagnosis aftershock

When someone is diagnosed with cancer, it doesn’t just affect them – it hits everyone around them, too. Deborah and her husband, Seb, were as honest as they could be with their two children right from the beginning. Eloise and Hugo understood that Mummy was going to be poorly and have treatment, which would mean there would be tubes and pumps to deliver medication that could keep her up at night or affect her mood.

Deborah would answer their questions where she could, so they weren’t worrying on their own. And by involving them with dances and pointing out the positives – like her being home a lot, so they could spend more time together – they weren’t afraid. I was in awe of how well she handled everything with her children.

Even though Deborah was an adult and a parent herself, she was still my daughter and I wanted to protect her. When I first found out that Deborah had been diagnosed with cancer, I was very practical about it.

I thought she’d have treatment and a few months later it would all be behind us. But that wasn’t the case, and the next four years were a complete rollercoaster. I didn’t know emotions could climb so high and then fall so low.

When Deborah would get good news – even a period where there was no evidence of cancer – the thrill was just fantastic. But then she’d receive bad news, that the cancer had come back, and there would be a massive emotional drop and we’d all hit the bottom again.

My husband, Alistair, was my rock in that period, and still is. He’s such a calm influence and is always there to pick up the pieces. As Seb needed to look after the children, I’d usually go to Deborah’s appointments with her, and Alistair would sort out everything he could for me, even taking me to the hospital because I don’t like driving in the dark. Even though he was devastated at seeing his daughter ill, he was still there to support me.

Keeping afloat

Through all the ups and downs, I tried to keep a sense of normality in my life, but it was so hard when I felt like I was being constantly knocked sideways. I’ve always been a planner, someone who thinks ahead and gets organised, but cancer destroyed all of that.

Any sense of control was taken away – I had no influence over the disease or what it was doing to my daughter, and I couldn’t even control my schedule. I might think of planning a trip, but then there would be scan results to wait for; or perhaps I’d arrange lunch with friends, but then I’d need to go to a hospital appointment or help out with the children. It’s so hard to maintain normality when everything is spinning around you.

I’ve never really been a crier, but when things got on top of me, I’d get together with friends over a bottle of wine to talk things out. They were always so understanding about working around my unstable schedule, never getting frustrated if I cancelled last minute and happy for an impromptu meet-up when I needed them. Having a network of understanding people to turn to made the world of difference.

Of course, in 2020, the pandemic hit, complicating the situation further. Deborah couldn’t take me or anyone else to her appointments any more, even for an MRI scan, which she hated because she was claustrophobic. Alistair and I couldn’t even hug her for reassurance; we’d have to wave through the window from the pavement outside.

But the isolation impacted Seb the most. He was trying to take care of his sick wife, work and homeschool two children, all while being almost entirely cut off from his family and friends. I think it brought the four of them closer together, as Seb, Eloise and Hugo all mucked in together for Deborah, but it was tough. Seb did a fantastic job, and it was such a relief when we could all be reunited and fully support each other again.

Supportive siblings

When someone receives a cancer diagnosis, people often consider the impact it will have on their partner and children, and perhaps also their parents, but the shockwaves spread much further. Deborah’s brother, Ben, and sister, Sarah, for example, were both close to her and were blindsided by her diagnosis, too.

Sarah is very practical, so she’d go and stay the night with Deborah when she was having treatment, and Debs would joke about Sarah falling asleep early. Ben, on the other hand, is 10 years younger, and he and Deborah could be very mischievous together. She’d convince him to smuggle her out of hospital to the pub across the road, and she’d be grinning in her wheelchair as Ben wheeled her away on their escape plan.

Towards the very end of her life, Deborah chose to come home to die, and one of the first things she wanted to do was to have a sleepover with her brother and sister. Hearing them giggling in the room together took me back to family holidays when they were children. And when Ben announced that he was engaged, Deborah said to him, ‘I am so, so happy for you and I’m sorry I won’t be there for your wedding.’ I could see the sadness in her eyes, but she was so brave for him.

Coming home

When Deborah came home from the hospital, we were told she’d have a matter of days, but she was with us for eight weeks. It was as though she didn’t have time to die, there was so much she wanted to do. I’ve never seen someone so determined. Deborah wanted to get the Bowelbabe Fund for Cancer Research UK set up and aimed to raise £250,000. The fund quickly hit £5m, reaching nearly £7m before Deborah died in June 2022.

One of the most surreal moments from those weeks was Deborah’s damehood from The Prince of Wales. There was so much going on that I didn’t even have time to wash my hair, and there was Prince William, the future King, sitting in the garden chatting to my daughter. It was so lovely to see the joy in Deborah’s face, knowing that all the work she’d done had been recognised.

It’s now been two and a half years since we lost her, and I miss Deborah more than ever. It feels so long since I last got to see her. Burying a child is one of the biggest traumas anyone could go through, and sometimes the reality hits me all over again. I might set the table for a family gathering and lay 12 places, and then realise there are only 11 of us now. Or I’ll have a sip of Champagne and think, ‘Deborah would’ve loved to have a glass with me.’ But I know grief isn’t linear and Deborah has taught me to embrace every moment and to focus on what’s truly important.

Looking forward

I feel especially lucky watching my grandchildren grow up, because their mum isn’t here to see it. Deborah always said to Eloise and Hugo, ‘Don’t use my cancer as an excuse for messing up your life,’ and I know they won’t.

If anything, they’ve become more resilient and emotionally literate after everything they’ve been through. I couldn’t have coped with what they’ve been through at their age; they’re just brilliant.

Besides, in a lot of ways, I feel like Deborah is still with us. One of her legacies was a beautiful variety of rose that was named in her honour. So, at Ben’s wedding, he wore one of Deborah’s roses in his buttonhole and we used the petals as confetti. It was such a beautiful day and we missed her terribly, but it felt like she was there with us, too.

Now, my focus is on the Bowelbabe Fund, which has raised over £17m so far and is helping to support the cutting-edge cancer research and brilliant awareness activity that Deborah cared so deeply about.

Awareness is the most important thing we’re striving for, because if bowel cancer is caught at stage one, there can be a 90% chance of survival. But at stage four it can be less than 10%. I’d love to see new treatments one day that can help people live a long and good-quality life after receiving a bowel cancer diagnosis. I have a lot of hope for that future, however difficult it might be to achieve – I learned that from Deborah."

The Bowelbabe Fund for Cancer Research UK supports projects and causes Deborah was passionate about. Anyone can support the Fund by donating, fundraising or spreading vital awareness about bowel cancer; visit bowelbabe.org/funding