My beautiful whirlwind of a girl is gone – but her spirit lives on, says Dame Deborah James’ mum

IN June 2022, Heather James, 66, held her daughter Dame Deborah James’ hand as she passed away, five years after she was diagnosed with bowel cancer.

Here, Heather shares her experience of being mum to the trailblazing campaigner.

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“I brought my daughter into the world, and I was with her when she left it.

Holding Deborah’s hand as she took her final breath in June 2022, I felt so much sadness, but also relief – my beautiful whirlwind of a girl was gone, but her pain was also over.

To be a mum to a child who is no longer alive is hard every day, but especially on Mother’s Day.

I’ll always be a mum of three, even though one of my children is gone, but today my focus isn’t on myself, it’s on my grandchildren Hugo, 16, and Eloise, 14, who’ve lost their incredible mummy.

They can’t give her a card or gift, or just enjoy one of her lovely cuddles.

All I can do is pour my love into them today, as I have done every day for the past 21 months, and be there for them. 

Dame Deborah James, my eldest daughter, died aged 40, five-and-a-half years after she was diagnosed with bowel cancer.

It’s still hard to fathom that the world has carried on without her – ever since she was tiny, she was such a force of nature.

Deborah, who worked as a teacher, was diagnosed in December 2016 when she was just 35, and her children were nine and seven.

She was a fit, active young woman, a vegetarian and a non-smoker, but was losing weight, passing blood when she went to the loo and feeling exhausted.

Initially, it was put down to stress or IBS, so the news she actually had bowel cancer was devastating.

But I believed she’d have an operation and chemotherapy, then be back to normal soon.

It was a few weeks, and more tests before I was shocked out of that blissful ignorance by the news it was stage four cancer.

I wasn’t remotely surprised by the courage and determination that Deborah showed – that was just how she was. 

And it wasn’t enough for her to face her own illness – she wanted to help others, too.

She was consumed by a need to shout from the rooftops about cancer, the signs and symptoms, and the importance of listening to your body.

‘She longed to make the world a better place for her children’

Shortly after her diagnosis, she started her Bowelbabe blog and began writing a column for The Sun.

From there, she co-hosted hit podcast You, Me And The Big C, campaigned with The Sun to lower the NHS screening age, urged people to get checked, and talked about poo whenever she got the opportunity. 

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At the heart of it all were her children. She longed to make the world a better place for Hugo and Eloise, and dreamed of a future where they wouldn’t have to fear cancer.

That was the inspiration for one of her biggest and final initiatives, the Bowelbabe Fund.

She set it up in the weeks before she died to pay for research and help find new treatments for cancer.

Knowing her time was running out, she put every last ounce of energy into it. 

However, Deborah’s legacy is far from limited to the work she did and the lives she has saved – and continues to save.

Her true gift to all of us were her lessons in how to live life.

She squeezed every single drop of joy out of every day, and it’s something I see shining brightly in her children. They both share her energy and passion. 

The weekend before she died, she told them they must live a life worth living.

‘‘You never know when life will be taken away from you, so grab every moment and live,” she said. I try to follow that mantra, too. 

I’m prone to putting things off and saving all the best things for “high days and holidays”. Deborah would tell me off! She was the complete opposite – she’d wear her favourite dresses, just because. 

I’ve tried to channel that bold, bright outlook since she died.

I get dressed up for no reason, I’ve started wearing sparkly earrings like she did and I try to live in the moment more. It helps me feel closer to her.

‘I hated that I couldn’t take away her pain’

When Deborah was first diagnosed with bowel cancer, she was told it was unlikely she’d live for a year.

I struggled to comprehend it. How could I be faced with losing my daughter in a matter of months?

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Thanks to treatment, though, and her own inner strength, Deborah beat the odds again and again.

She endured so much, from a bowel resection to chemotherapy, radiotherapy and numerous cocktails of powerful drugs. She refused to give in.

On our final Mother’s Day together in March 2022, she was very poorly, but determined to come to my home for lunch.

I treasure the memories of that day – I really didn’t believe it would be our last together, because time and time again, she’d bounce back.

It wasn’t until Deborah left The Royal Marsden Hospital in May 2022, having been told there was nothing more doctors could do and that she had just days to live, that I was forced to confront my biggest fear.

As her mum, I felt completely helpless. I hated that I couldn’t take away her pain.

But she moved into our house, and we had seven weeks together, which gave us all a chance to make precious memories. 

She organised movie nights, hosted an impromptu engagement party for her brother Ben, 33, and his fiancée, and Prince William even came over for tea after Buckingham Palace announced her damehood.

It was a surreal time, both sad and wonderful, and filled with love. I’ll never forget it. 

Most nights I sat up with Deborah, as neither of us could sleep – both terrified she might not wake up.

We talked and talked, I told her how strong she was, and I promised her I’d be there for her children.

It was like having my baby back – my dying adult daughter needed me, she depended on me again. We were inseparable and our bond grew stronger and stronger.

When she passed away, I was holding her hand. Her final moments were peaceful and I feel grateful for that, after all she’d endured.

The first year after her death, I was running on adrenalin. I threw myself into supporting Deborah’s husband Seb, 44, and the children.

I kept busy to distract myself from my pain and I didn’t really process my grief. 

Then, as the anniversary of her death approached, I was crippled with panic attacks, which got so bad I could barely leave the house.

Everything had caught up with me and I was physically and emotionally exhausted.

Despite being reluctant at first, I was prescribed antidepressants, but I also find just talking about Deborah and looking at photos of her very therapeutic.

By the start of this year, I felt more positive. My daughter Sarah’s 40th was last month, and my son Ben is getting married in April.

Deborah is so missed on these special days, but we know she would want us to enjoy them for her. 

Deborah is gone, but her spirit lives on, both through her work raising awareness and fund-raising, which is ongoing, and in her family, especially her children.

Every day, I renew my promise to her, to love life as she did and always cherish it.”

• Visit Bowelbabe.org.