FOR Megan Barnes and her family, the last 120 days of her father's life were filled with uncertainty and confusion.
Super-fit Brian Jones, 77, still swam regularly and sported a six-pack at the start of last year.
But by May 2012 his distended stomach had to be drained of fluid every few days.
Yet even at the end, doctors could not confirm he had pancreatic cancer, such is the insidious nature of the disease that kills almost everyone unlucky enough to get it.
It was only after his death that the cause was identified as "metastasised pancreatic cancer" and his family were finally able to name the disease that killed him.
Mr Jones had countless blood tests, 17 biopsies and even whipple surgery, in which a section of the pancreas is removed and dissected, but everything was inconclusive.
Mrs Barnes, of Caringbah South, said she had never heard of pancreatic cancer before her father became ill and was shocked to find how little was known about it.
A photocopied handout was all the hospital could provide.
She later learned 2500 Australians are diagnosed with pancreatic cancer each year and 95 per cent die within five years — the worst survival rate of any cancer.
In desperation, she contacted the Garvan Institute, initially hoping it could help her father.
Now she is helping the institute raise awareness about pancreatic cancer and to fund vital research, such as the Australian Pancreatic Cancer Genome Initiative. See her petition: http://www.gopetition.com/petitions/obtain-more-funding-for-pancreatic-cancer-research.html
"What we need urgently is funding," said Mrs Barnes.
Project manager Amber Johns said the high death rate meant there were often few left to rally for the cause.
Mrs Barnes went to Parliament House, Sydney, recently for the launch of the first Pancreatic Cancer Awareness Month in November.
"Every day is a step closer to a cure," she said. "I will fight in memory of my beautiful Dad."
WARNING SIGNS
Early stages of pancreatic cancer cause few symptoms, which can go unnoticed until the cancer starts to affect nearby organs, but they can include:
indigestion and/or feeling sick (nausea), vomiting. appetite and weight loss, pain in upper abdomen, side or back, which may keep you awake at night.
Source: Cancer Council NSW
Details: 92958110 or http://www.pancreaticcancer.net.au/
