“I brought my daughter into the world and took her out of it.” This stark, brutal sentence defines the ultimate sorrow and strange relief of my experience. As I held Deborah’s hand, feeling the final spark of her extraordinary energy fade, I was overwhelmed by a tidal wave of sadness, yet relieved that the constant, grinding agony that had consumed my beautiful, whirlwind of a girl was finally over. The pain was gone, but so was the force of nature that was my eldest daughter, Dame Deborah James.
It is now twenty-one months since that day, and the world continues to spin with a heedless pace that still seems impossible. Even though one of my children has died, I will always be a mom of three, but today, and every day, my thoughts are anchored to her legacy: my 16-year-old grandson, Hugo, and my 14-year-old granddaughter, Eloise. They have lost their wonderful mother, and there is no gift, no card, and no hug that can ease that particular ache. All I can do now is love them and be the enduring presence their mother charged me to be.
Five and a half years after receiving the shattering news of her Stage 4 bowel cancer diagnosis, Deborah died at the age of forty. It is still hard to believe that such a colossal energy source could simply cease to exist. From the time she was a little girl, Deborah was a hurricane of curiosity, determination, and relentless ambition.
The diagnosis arrived in December 2016. Deborah was only thirty-five, a vibrant, active young woman with two young children, ages nine and seven, a deep aversion to smoking, and a healthy, meat-free diet. Yet, she had been slowly losing weight, dealing with bloody stools, and fighting persistent, bone-deep fatigue. Her symptoms were initially dismissed as the result of stress or irritable bowel syndrome (IBS). The eventual truth—that she had bowel cancer—was devastating, but I initially clung to the belief that surgery and chemotherapy would fix the problem, allowing her to be fine again soon. It was the crushing news weeks later, after further testing, that the cancer was already in its fourth stage and had spread, that stole my breath and forced me to confront my deepest fears.
To my surprise, Deborah didn’t crumble. Her innate bravery and fierce determination—traits I knew well—pushed her not toward silent despair, but toward ferocious action. She didn’t just want to deal with her own illness; she immediately saw a mission to help others. She wanted to shout from the rooftops about cancer, its insidious symptoms, and the absolute necessity of paying attention to one’s body. Her voice, loud and uncompromising, became a lifeline for so many.
Almost immediately, she began writing her candid column for The Sun and launched the now-famous Bowelbabe blog. Following that, she co-hosted the wildly popular podcast You, Me, and the Big C. She worked tirelessly with the NHS to lower the screening age, encouraging everyone to get checked and, yes, talking about poop whenever and wherever she could, effectively dragging the topic into public discourse with humor and force.
Her driving motivation, however, was always her children. “She wished the world were a better place for her kids,” I know this to be true. She pictured a future where Hugo and Eloise wouldn’t have to carry the same genetic or environmental fear of cancer. That hope was the core principle of her biggest and final project, the Bowelbabe Fund. In the weeks just before she died, knowing her time was tragically short, she threw every ounce of remaining energy into establishing the fund to pay for critical cancer research and find new, innovative ways to treat the disease. The success was monumental, raising millions in a testament to her unique power.
But Deborah’s true legacy is much bigger than the work she did or the lives she saved and continues to save. The most enduring gift she gave us all was a simple, yet profound, philosophy on how to truly live. I see this attitude reflected in her children: she seized every single day and found deep, vibrant joy in every small moment. They both share her passion and infectious energy. Just the weekend before she died, she gave them one final piece of advice: “You never know when life will end, so enjoy every moment.” I try every day to remember that mantra, though I am naturally inclined to be cautious, to put things off, and to save the “best things” for “holidays and high days.” Deborah would absolutely yell at me for that! She was the exact opposite; she would wear her favorite, most sparkly dresses for no reason at all. Since she died, I have tried to keep that brave, positive spontaneity alive. I dress up for no reason, I wear sparkly earrings like she did, and I consciously try to savor each moment. It makes me feel closer to her enduring spirit.
When Deborah was first diagnosed, I was told she probably wouldn’t make it through the next year. The devastation of that sentence was impossible to process; the thought of losing my daughter in mere months was unthinkable. Yet, thanks to intense, combined treatments and her ferocious inner strength, she defied those odds over and over again, becoming a medical marvel. She went through so much: the removal of her bowel, countless rounds of chemotherapy, radiotherapy, and various combinations of strong, experimental drugs. She simply would not give up.
Our last Mother’s Day together, in March 2022, is a day I will always remember. Despite being desperately sick, she was determined to come to my house for lunch. Because she had always bounced back, I truly didn’t think it would be our final one. But in May 2022, when Deborah left The Royal Marsden Hospital after being told that doctors could do nothing else and she had only days left to live, I was finally forced to face my biggest fear. As her mom, I felt a terrifying sense of powerlessness. I felt terrible that I could not ease her physical pain, only witness it.
She moved in with us, and we were blessed with seven weeks together—a period that was strangely wonderful for all of us. Despite the circumstances, she organized movie nights and even threw an unplanned engagement party for her thirty-three-year-old brother, Ben, and his fiancée. In the midst of this surreal domestic scene, Prince William even came over for tea after Buckingham Palace announced she was to be made a Dame. It was a strange, heart-wrenching time, full of immense love, laughter, and an inescapable underlying sadness. I will treasure those memories forever.
In those final weeks, we found solace in the dark. Deborah and I both struggled with insomnia, and most nights, we stayed up together, talking for hours, sharing our fears that she might not wake up. I told her how proud I was and promised her I would always be there for her children. It was like getting my baby back; my dying daughter depended on me again as she had when she was a small child. We couldn’t be apart, and the love between us deepened and grew stronger than ever. I had her hand in mine when she passed away, and after everything she had endured, I am deeply relieved that her last moments were peaceful.
The first year after her death, I operated on pure adrenaline, doing everything I could to help her forty-four-year-old husband, Seb, and the children. I kept impossibly busy to distract myself from the terrible reality, but I never truly dealt with my grief. When her death anniversary arrived, I hit a wall. I began suffering terrible panic attacks that made it impossible for me to leave the house. Everything had finally caught up with me; I was physically and mentally worn out. Although I was reluctant at first, I was prescribed antidepressants, and I began the slow, necessary process of healing through talking about Deborah and surrounding myself with pictures and memories of her.
I felt a decisive shift at the beginning of this year. We have important family milestones ahead: my daughter Sarah’s fortieth birthday last month, and my son Ben’s wedding in April. We miss Deborah intensely on these significant days, but we know, absolutely, that she would want us to enjoy them and live them fully for her. Deborah is no longer with us, but her brave, sparkly spirit lives on powerfully in her family, especially her children, and in the enduring, life-saving work she did to raise awareness and funds that will impact generations to come.