At 28, Catherine 'Riney' Ross was too young to be diagnosed with bowel cancer - at least that's what the statistics say.

Riney was doing all the right things, she was fit, healthy and ate right.

So when doctors delivered the news in October 2014, it came as a shock.

What followed was a four-and-a-half year journey of surgeries, treatments and clinical trials which ended in January this year when Riney lost her battle.

Riney was a tireless campaigner, raising awareness of the disease which is increasingly being diagnosed in younger people.

She and husband Jamie Bell started the Research4Riney foundation which has raised more than $250,000 for research and to raise awareness.

Next month the Jodie Lee Foundation's trek in Daylesford will be held in her honour, and 100 people will participate under the Research4Riney banner on September 6 and 7.

Among them will be Riney's parents Russell and Judy, Jamie and his mum, Peterborough's Cath Bell, along with other family and friends from across the south-west, many of whom have been meeting up at The Shed for a cuppa every week before walking up Mount Noorat as training for the Daylesford trek.

This weekend, Cath and her daughter Rosie Fitzclarence will travel to Brisbane for the city's inaugural Jodie Lee event and trek up to 83 kilometres. Cath became teary when she talked about how inspirational her daughter-in-law was to those around her. "When Riney was diagnosed with bowel cancer she felt like she wanted to do something that was proactive," she said.

That's why she started Research4Riney, and money raised has gone to Bowel Cancer Australia, the Peter MacCallum Foundation and the Jodie Lee Foundation.

Despite the past few years being filled with heartbreaking doctors' appointments for Riney, Jamie described them as some of the best of their lives - they got engage, married and brought their dream property near Birregurra.

Jamie said that when Riney was diagnosed it came as "somewhat of a surprise" because she was just 28. Riney had had abdominal pains for a while, but they had been dismissed as gluten intolerance or inflammation.

Jamie said her earlier issues were probably unrelated, but could be one of the reasons why she did end up with bowel cancer. "It was pretty obvious she had something going on there which may or may not be linked to the actual cancer," he said.

"It just goes to show that it can be really difficult to pick up the symptoms of bowel cancer. It was even more tricky in her case. It may have masked the bowel cancer symptoms when they did come along."

Mrs Bell said she had known Riney since she was 18 and she had sometimes mentioned that her tummy wasn't "quite right". "The doctors always thought she was too young for colonoscopy," she said. "They fobbed her off almost until two trips to emergency and they finally did a colonoscopy."

Jamie said his wife probably developed bowel cancer in her early 20s given that it was quite advanced by the time she was diagnosed.

Surgery soon after she was diagnosed found the bowel cancer had spread to the lymph nodes. That first surgery to remove part of her colon was followed by six months of chemotherapy - the first of three rounds and then another two attempts.

By the end of 2014 the couple were engaged, but three weeks before their New Year's Eve wedding in 2015, Riney was back in hospital for another operation - this time to remove part of the liver, ovaries and tumours from the peritoneum.

"She was in intensive care two weeks prior to the wedding and made it out and walked down the aisle," Jamie said. She walked down the aisle on her father Russell's arm to The Beatles song Here Comes the Sun, a song that summed up Riney, who Jamie described as "the best person he'd ever met".

"She was just a happy, passionate, caring person who just wanted to help others and have a good time and live life to the fullest," he said. "She was always conscious about not wanting to waste time and she'd always do everything to the best of her ability and leave no stone unturned. She would always put other people before herself."

After spending two years working in the UK, Riney had just started her dream job as a primary school teacher in Melbourne when she was diagnosed. "We didn't know how serious it was at that point," Jamie said. "She was worried about letting people down at work and she'd just got this great job.

"She tried to push through and kept working through chemo for a period of time and it was just too much. The next four years were just about fighting it and trying to find a cure."

Riney participated in two clinical trials - both of which were in their early phases - but they were unsuccessful. "We were hopeful but there was nothing there to suggest it was going to help her directly," Jamie said. "But as a result of that trial they've been able to understand and develop a pretty promising treatment for blood cancer specifically, not so much bowel cancers."

Jamie and his family want people to know just how easy it is to take a test for bowel cancer. "You can get tests from chemists. It's just so easy. The idea of people thinking they have to do a poo test puts them off," Mrs Bell said.

"You don't have to do a colonoscopy, it's just making people aware that if something's not right they need to have it checked out. Early diagnosis is the key to bowel cancer. If it's caught soon enough, it's treatable."

Mrs Bell said while traditionally bowel cancer affected older people, more and more young people were now being diagnosed with the disease.

Jamie said no one really knew why it was becoming more common among younger people. "There's definitely a link between bowel cancer and age or diet," Jamie said.

However, Riney had always put a lot of emphasis on being healthy and eating the right thing. "Sometimes it just doesn't discriminate for whatever reason," he said.

While the four-and-a-half years Riney battled bowel cancer weren't easy, Jamie said they were also the happiest. "They were definitely the hardest but the best years of our lives as well, which seems a bit ridiculous but it's true," he said.

They'd bought their dream property - 25 acres near Birregurra which they put their hearts and souls into - in early 2016 around the time Riney was rediagnosed with stage four bowel cancer. He said that stage four "generally means it's incurable", but they held on to the knowledge that there had been people cured from the disease that had progressed that far.

"We always managed to pick ourselves up and look forward to something else that we'd try and do, which we did literally right to the last week," Jamie said.

"The day she got really, really sick, and it happened on a Tuesday, that night we were meant to have an appointment with an oncology trial doctor in Melbourne about something we could become involved in through Peter Mac hospital, and then two days later she passed away. She fought right to the very last breath."

Cath said that, as a family, they never accepted that she couldn't be cured. "I know I always thought there would be a cure. She would be OK," she said.

Jamie said that as time went on, "we knew it was getting worse and worse and we knew time was running out but we just always thought there was no way we could possibly lose her".

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