Killer cancer we know almost nothing about
AT 45, worn out from chasing after two small children and sometimes neglecting to take care of herself, Kristin Washbourne didn't even think to question her GP when he told her the abdominal pain she had been experiencing was probably indigestion.
She accepted the diagnosis, went to the chemist for some antacids, and promised to take better care of herself.
It wasn't until loading up on yet more packs of the indigestion tablets, that a very insistent young pharmacist warned her that if she's been taking the treatment for more than 10 days she had to see her doctor about it.
She'd been popping the over-the-counter pills daily for almost a full year.
"Over that year I had been mentioning the pain to my doctor, but also blowing it off a bit and blaming myself," she told news.com.au.
"I was a bit overweight, not exercising as much as I should, but I sort of kept downplaying it, but after that I asked him to send me off and get tests for ulcers and bacterins that caused ulcers."
The tests didn't eventuate, instead Kristin made another promise to take better care of herself.
But a little while later, after a week of extreme fatigue during the summer holidays - barely being able to move for the pain, and feeling like she could only feel OK if she didn't eat - Kristin began taking the symptoms a bit more seriously and had her husband rush her to the emergency room.
A lick of fake tan had concealed her yellowing skin, and through her tiredness she didn't notice her eyes had gone a creamy colour.
This extreme jaundice, combined with the stomach pains, the fatigue, and some strange bowel movements, all pointed to one thing: pancreatic cancer.
"It was something that I had never even thought of, and looking back now, even when I got the diagnosis, it makes me realise how much I didn't know," she said.
Instead of freezing at the word cancer, Kristin said she felt strangely relieved. She thought: "They cure cancer these days, I guess I'll be fine."
But what Kristin didn't know then, and what most Australians aren't aware of, is that when it comes to pancreatic cancer, there's no such thing as an easy fix.
It is one of the most aggressive cancers with one of the lowest survival rates.
Of the nine people diagnosed in Australia every day, only one is likely to survive.
When Kristin was diagnosed, just five years ago, she was give a two per cent chance at survival.
On average, when an Australian is diagnosed with the disease, they'll only have six months to live.
It was the terrifyingly low instances of survival from pancreatic cancer that make Kristin not only lucky to be alive, but also made her journey so difficult.
Even though she was given such a dark prognosis, her treatment was successful and she never felt as sick as she thought she should.
After a gamut of tests and surgery that left her with a scar from her pubic bone to her sternum that made Kristin look "all zipped up", she cried for 48 hours, didn't sleep for days, and stayed in hospital for weeks.
Eight rounds of chemo and radiation left her "knocked out" for months, but every step of the way she was just thinking, it could be a lot worse.
As she went through her recovery, Kristin's understanding of the seriousness of the disease continued to develop, and she realised how lucky she was.
"The pain (from the surgery) was incredible, the recovery from that was just unbearable, but it eventually was over and I felt pretty much OK," she said.
"In my recovery, I had a really bad feeling of survivor guilt. I lost 30kg, There were months when I was basically bedridden, completely knocked out by steroids, but every step of the way I knew most other people didn't make it to that stage."
When Kristin started to feel better, things began to get even more uncertain.
"The trouble is for me, once I started getting better, it gave me a boost when the oncologist was pretty happy that I was still around so I thought maybe I was here for good," she said.
"So what I wanted to know was, what happens next? But I couldn't find any survivors to talk to. No one could tell me what was going to happen, how my life would change, if I would carry on as normal.
"It was a really hard time. I was so desperate to talk to someone to find out what happens next, but the survival rates are even lower than the awareness rates when it comes to this disease."
Five years on from her diagnosis and fighting fit, Kristin has accepted that she is a survivor, and feels the responsibility to use her experience to help people who have been diagnosed, and those who may be delaying diagnosis like she did for so long.
"The thing about this disease, is there is no reason for it. There's not like a family history as with breast cancer so you know to get checked, there's no really obvious or specific symptoms like with bowel cancer or prostate cancer," she said.
"The only hope now is to know the symptoms, and know if someone's telling you they've got indigestion, if it persists, then go and do something. That's the only way we're going to catch it."
St Vincent's Hospital pancreatic cancer specialist Dr Lorraine Chantrill says the reason pancreatic cancer doesn't get the same level of awareness as some others with lower death rates, is the same reason Kristin found it difficult to find answers about her recovery.
"The main reason it doesn't get that recognition is because people die from it," she said.
"There are very few people who survive who can go on to campaign for it. The other cancers that have got a lot of visibility are cancers that people survive."
Dr Chantrill says recognition and awareness around the disease are "getting better", and it's rising in line with survival rates.
Having the unenviable badge of one of the worst cancers is getting it noticed as well.
But while recognition is increasing, the symptoms are still vague and hard to pin down.
"It's a cancer that generally presents in people who are older than 60, it often presents with some vague symptoms like upper abdominal pain, but in people who develop diabetes without being overweight, people who have change in their bowel habits of suddenly lose weight for no reason, we want those people to keep persisting with their doctor and to go and get tests," she said.
"I think we can start to end the nihilism around pancreas cancer and start actually making a difference and it's thanks to some really brave people who have participated in research."
This coming Wednesday is world pancreatic cancer day. The Sydney Opera House will be lit up in purple lights and landmarks across the world will follow.
Kristin's daughter, Marla, has died her hair purple ahead of the day, and Kristin will wear purple clothing.
Whenever anyone asks them why, they'll start the conversation Kristin, Dr Chantrill and others affected by pancreatic want Australians to start having.
"If people start talking about it, and people start being aware of it, that's going to lead to more awareness, more fundraising, more research, and more survivors," Kristin says.