When Emma Steven felt a little off she put it down to the stress of motherhood combined with an injury.
The 37-year-old former vet nurse from Timaru went to gut health seminars and tried to maintain a healthy lifestyle.
There had been bloating, a change in her stools and, once, she saw blood in the toilet water.
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But pain under her ribs was the last straw. She went to her GP in February and a series of tests including scans and a colonoscopy revealed stage 4 bowel cancer that had spread to her liver and lungs.
"They can't cure it, but ... I don't want a prognosis."
The secondary tumour in Steven's liver was 9.5cm long by the time she was diagnosed.
As well as the bowel tumour, there were a number of spots on her lungs. Doctors told Steven they would not operate.
Instead, she started chemotherapy and an unfunded drug called Cetuximab, which is mostly being paid for by Steven's health insurance while she pays the rest.
Her goal is to live as long as she can for her family, daughter Kaylani, 3 and a half, son Andre, 18 months, and husband Conrad.
So far the results of her treatment are positive - the tumours are shrinking and the spots are dying.
Since being diagnosed Steven said she had met or spoken to at least five other women of a similar age to her who had bowel cancer.
"They say we're not in the risk category but it's everywhere. It's not just an older person's disease."
Now, in the middle of her chemotherapy, Steven is raising money for Bowel Cancer NZ as part of the Move your Butt challenge in June, to raise awareness of the disease which claims 1200 lives each year in New Zealand.
The challenge, fronted by former Black Caps fast bowler Simon Doull and his wife, Liana, aims to get Kiwis off the couch and exercising for at least 10 minutes a day to help prevent the disease.
Both of Doull's parents died of bowel cancer, and Liana was just 36 when she was diagnosed with it in 2014.
"Bowel cancer takes such a back seat here in New Zealand," Liana Doull said.
"There's so much information about other types of cancer, but people don't like talking about bowel cancer.
"If there's something I can do that helps another young person get their symptoms checked earlier, then I'll be happy."
Bowel Cancer NZ spokeswoman and University of Otago professor Sarah Derrett criticised the Government's bowel cancer screening programme for not screening those aged between 50 and 59.
She said 12 per cent of New Zealanders diagnosed with bowel cancer every year were in this age bracket.
"That's 360 New Zealanders in the prime of their working and family lives denied a timely diagnosis via screening which could make the difference between life and death".
Bowel cancer is one of the easiest cancers to beat if detected early.
"The justification the Ministry used, then and now, is that this 'hard call' was necessary because our district health board's don't have the workforce capacity to deal with the extra cases that screening New Zealanders from age 50 would require" Derrett said.
After a six-year trial at Waitematā District Health Board - including this age group - the country's screening programme for those aged 60 to 74 is still not operating at some DHBs, including Waikato, Auckland and Northland.
Bowel Cancer NZ has two key demands:
• For all New Zealanders in their 50s to be screened for bowel cancer by 2025;
• And for Māori in this age group to be screened immediately.
Compared to 12 per cent of all Kiwis, 22 per cent of Māori are diagnosed with bowel cancer in their 50s.
The National Bowel Cancer Screening Review released in 2018 showed initiatives to address the workforce shortfall had repeatedly stalled.
"That represents six years of inaction while hundreds of New Zealanders in this age group were effectively given a death sentence," Derrett said.
"It beggars belief the Ministry has dropped the ball on this because we know screening is not only life-saving but it saves health system and taxpayer dollars."
No decision had been made on whether to start screening younger for Māori and Pacific people.
Ministry deputy director of general population health and prevention, Deborah Woodley, said it was important to get the foundation right.
The ministry aimed to establish the programme within system capacity first, before parameters were reviewed and any changes considered, which could increase demand, particularly on colonoscopy services, she said.
As of last Monday, the National Bowel Screening Programme had sent out almost 430,000 test kits and detected more than 600 cancers, as well as removing thousands of pre-cancerous polyps, Woodley said.
Before Covid-19 the screening programme for 60 to 74 year-olds was supposed to be fully rolled out by June next year but Woodley said it was paused during the lockdown and this was expected to push out implementation timelines.