'Watching Dame Deborah James die at 40 saved my life'

A mum-of-three young children says her life was saved by Dame Deborah James.

Lyndsey Ainscough started noticing some worrying symptoms – finding dark blood when going to the toilet and losing weight. At first, she dismissed them as changes in her lifestyle, and she assumed the bloating was irritable bowel syndrome.

But in 2022, she watched as ‘You, Me and the Big C’ podcaster and journalist Dame Deborah was in the final days of her struggle with bowel cancer, and decided she should see a doctor. Deborah died in June of that year aged 40, five years after her stage four bowel cancer diagnosis.

READ MORE: The 'typical' thing inspiring teacher Kate Rackham did amid her tragic death

Lyndsey was just 37-years-old, a busy mum to three children, Perry aged four, Spencer aged eight and Alfie aged 12 years, when she started noticing suspicious signs.

“I had noticed dark blood when going to the toilet and was losing weight. I’d put it down to a change in lifestyle during the pandemic and thought the bloated tummy was IBS (irritable bowel syndrome), but when I saw ‘Bowel Babe’, who was a similar age to me, on breakfast TV something just clicked and I suddenly thought, what if I have the same? So, I decided to make an appointment to see a doctor straight away. I have her to thank for that,” Lyndsey explained.

In June 2022, the same month Dame Deborah died, Lyndsey had a colonoscopy and then a biopsy which gave her the devastating diagnosis that she had stage three rectal cancer which had spread to her lymph nodes. The rectum is a chamber at the end of the large intestines and forms part of the bowel.

Looking back, Lyndsey said: “It was the worst time of my life.

“I took my husband, mum and dad with me to get the results of the biopsy and I was in shock when I learnt it was stage three. I just looked at them and couldn’t take it in, as I wasn’t expecting the cancer to be that advanced.”

Lyndsey, a school attendance manager, had to make the difficult decision with husband Christian over how to tell their little ones. “The worry was tremendous, particularly with having such young children,” shared Lyndsey.

“We decided to tell our eldest Alfie, who accepted it quite well as he could see mummy was unwell. But Spencer is a worrier so we chose to give him as little detail as possible, and Perry, our daughter, was only two so wouldn’t have understood.

“Another blow came when we found out the tumour, which was 5cm in size, was on the outer lining of the bowel so couldn’t be removed by surgery and I had to have a stoma fitted to allow the bowel to rest before I could begin treatment.”

A stoma is an opening made during surgery. It connects the bowel to the surface of the abdomen so that faeces can pass through it and be collected into a small bag attached externally to the body.

Lyndsey was an active person playing netball twice a week and a regular gym-goer before her illness. But by July 2022, she was being referred to The Christie, Manchester’s renowned cancer treatment centre.

In the September, Lyndsey agreed to take part in the PRIME RT trial and received radiotherapy together with chemotherapy tablets for five weeks alongside a new immunotherapy drug called Durvalumab.

Immunotherapy works by stimulating the body’s own immune system to fight the cancer. The aim of the combined treatment was to shrink the size of the tumour.

The trial drug was given intravenously every four weeks for 16 weeks. Lyndsey then had four sessions of chemotherapy before completing her treatment in January 2023 and was miraculously given the all-clear.

She now just returns for three-monthly scans and monitoring. Lyndsey has since undergone two operations which have included a stoma reversal in September 2023. A stoma can be permanent, but in some cases, like Lyndsey’s, it can be reversed.

Lyndsey said: “If you are offered a clinical trial, take it with both hands and treat it as a positive opportunity to fight the cancer. See it as a chance to defy all negative expectations and change the narrative.

“Be proud to be able to contribute to helping other families that continue to be affected.vA complete response to the trial means I can now make the most of life and appreciate quality time with all my family.

“I was able to celebrate my 40th birthday on our family holiday last summer and see Alfie play rugby at Wembley. Christian and I are now looking forward to celebrating our 10th wedding anniversary this summer and seeing Perry start school in September.”

Expert cancer doctors have warned that they are seeing an ‘increase in colorectal cancers in young adults’ – so it’s vital to get checked out when symptoms appear. Starting treatment as early as possible can prove life-saving, as in Lyndsey’s case.

Dr Claire Arthur, consultant oncologist at The Christie said: “We’re really pleased with Lyndsey’s outcome from the clinical trial. There’s no evidence of the tumour and she tolerated her treatment for rectal cancer really well.

“In Lyndsey’s case the trial drug worked and we can’t see any remaining cancer and she’s had a complete response to the treatment which is wonderful and means she can now enjoy time with her young family.

“We’re seeing an increase in colorectal cancers in young adults, so it’s important people who have possible symptoms don’t delay going to their GP and getting checked out. The earlier this disease is caught, the better the outcome.”

Lyndsey is back working full-time at a local high school, and planning a return to netball. She wants to make sure that Bowel Babe’s legacy lives on through cancer survivors like her.

Lyndsey said: “Cancer does not discriminate and affects people from all walks of life. The one thing it does consistently is bring fear and uncertainty to the lives of people who least expect it, so if we can all share stories and offer support to each other then we continue Bowel Babe’s legacy to always have ‘rebellious hope’.”

The PRIME RT trial completed recruitment in May 2023, including 42 patients across five UK sites including Aberdeen, Glasgow, Kilmarnock, Manchester and Oxford. When patients are referred to The Christie to discuss their cancer treatment, details regarding potential clinical trials they may be suitable for will be discussed.

Together, the patient and clinical team will decide whether it is appropriate to proceed with a trial or not. More information about taking part in clinical trials can be found here.