West Sussex founder shares dad's pancreatic cancer story to raise awareness of symptoms and the loss of dignity no one talks about

This Pancreatic Cancer Awareness Month, Zoe Robson, from West Sussex, has joined Pancreatic Cancer UK in raising awareness of the disease after her dad, Fred, died 11 weeks after diagnosis. Zoe, founder of Joyvié Health, is sharing his story so that more people recognise the vague symptoms and are diagnosed early enough for treatment, and to speak about the loss of dignity at the end of his life.

In early 2024, Fred Robson, 77, mentioned a stomachache. He'd lost a little weight. He was fit and still lifting weights, and his doctor put it down to IBS.

On Christmas Eve 2024, he was diagnosed with advanced pancreatic cancer and told he likely had six months. He died 11 weeks later, in March 2025.

"We all thought that if it was cancer, we'd caught it early," said Zoe. "He'd had blood tests and scans, and nothing sinister showed up. He was still carrying on as normal. Surely late-stage cancer would have shown up; surely, he'd be much, much sicker. It was a terrible shock."

Fred's story is far too common. Pancreatic cancer is the deadliest cancer. Half of people with the disease die within three months of diagnosis. Its symptoms are vague and common to many less serious conditions, so it is often diagnosed late, after it has spread. 80% of people are not diagnosed until it is no longer operable, 7 in 10 are unable to have any treatment, and just 10% have surgery, the only potential cure.

Common symptoms of pancreatic cancer include indigestion, back or tummy pain, changes to your stool, unexpected weight loss or loss of appetite, and jaundice (yellow skin or eyes and itchy skin).

If a person has any of these symptoms and doesn't know why, they should contact their GP or call NHS 111. If they have jaundice, they need to go to their GP or A&E straight away.

Diana Jupp, CEO of Pancreatic Cancer UK, said: "While our world-class researchers work on developing new, more effective treatments for pancreatic cancer, early diagnosis is vital to give someone the best chance of survival. That's why we are urging the public to learn more about the disease and its symptoms this Pancreatic Cancer Awareness Month. While we don't want to cause panic, if you or a loved one have persistent symptoms, it's crucial that you do not delay seeing your GP."

Zoe's family were braced for the cancer. What they weren't prepared for was a part of end-of-life care that almost no one talks about: loss of bowel control. 

It is more common than people realise. According to Pancreatic Cancer UK, 60 to 90% of people with the disease develop pancreatic exocrine insufficiency (PEI), where the pancreas can't make enough enzymes to digest food. PEI can cause diarrhoea. It can be treated with enzyme tablets, yet the charity says only around half of people with pancreatic cancer in the UK are prescribed them. The charity's own research links these digestive symptoms to a worse quality of life, and through its Clinical Pioneer Awards it funds practical ways to improve quality of life as well as survival.

Within five weeks of his diagnosis, Fred was bedbound and had lost control of his bowels. Zoe's mum, Ruth, became his carer overnight, changing and cleaning him around the clock. The only option available to help was an adult nappy. For a man who weeks earlier had been lifting weights, the loss of dignity was profound. His skin broke down quickly, and he died with sores that never healed.

"Dad was completely aware of what was happening to him, and he hated that nappy," said Zoe. "Early one morning he tried to get to the commode, rather than soil himself, and fell. We couldn't lift him, so he lay on the floor covered in his own waste for 40 minutes, while we waited for nurses to come with a machine to get him back into bed. As I cleaned him, he looked away from me in shame. I was horrified. This can't be what end-of-life care looks like. I resolved to fix it."

Zoe, a product designer, set out to do exactly that. Her company, Joyvié Health, is now developing Joyvié, underwear that contains stool and keeps it off the skin. It is designed to restore dignity, maintain skin integrity and free up more time for care.

"Joyvié was born out of grief and chaos," said Zoe. "Nothing I build will bring Dad back, but it might help the next person, and the family caring for them, so they don't go through what we did. That's Dad's legacy. And if one person reads this, recognises the symptoms and sees their GP sooner, that's his legacy too."

Pancreatic Cancer Awareness Month runs throughout November. 

For information and support, visit www.pancreaticcancer.org.uk or call Pancreatic Cancer UK's free specialist nurse Support Line on 0808 801 0707.