Bathurst residents talk about pancreatic cancer experiences

SUPPORT CARERS: Diana Agland, Krissy Christian and Georgie Manders cared for their grandmother after her diagnosis. Photo: CHRIS SEABROOK
SUPPORT CARERS: Diana Agland, Krissy Christian and Georgie Manders cared for their grandmother after her diagnosis. Photo: CHRIS SEABROOK

WHEN someone is diagnosed with pancreatic cancer, their whole life changes in an instant. But so does the life of the people closest to them, the people who will drop everything to care for them. So it raises the question: who cares for the carers?

Three weeks, that's all it took; 21 days between living life and losing life.

The average time between being diagnosed with pancreatic cancer and losing the battle is a mere five months.

That's an already short timeframe that was even shorter for Diana Agland and her sisters when their grandmother found out she had one of Australia's deadliest diseases.

After being told that their grandmother most likely had stomach ulcers, the family were shocked when the official diagnosis came back as pancreatic cancer.

They were not prepared for the turmoil that would become their life for the next few weeks and it's this uncertainty that PanKind (the Australian Pancreatic Cancer Foundation) is hoping to change through its new study that aims to support the carers of pancreatic cancer patients.

IN OTHER NEWS:

PanKind has teamed up with QIMR Berghofer Medical Research Institute for the PRoCESS Trial (Pancreatic Cancer Relatives Counselling and Education Support Service).

The trial focuses on the impact of having a nurse provide structured counselling and education to those caring for a pancreatic cancer sufferer and how this helps them cope with the challenges they face.

Ms Agland and her sisters took their grandmother to Nepean Hospital because there was no local hospital that could perform the surgery that was required.

Back then it was taking people from regional areas where they live and [where] they've got their support network and dropping them down in the middle of metropolitan areas.

They did not know the roads or what public transport to take and they did not have any family in Sydney with whom they could stay.

The women stayed in a caravan park for more than two weeks only to be told by the end of their stay that the surgery was unsuccessful and the cancer could not be removed from their grandmother.

From there, the ladies were told they would probably have a year or two left with their grandmother, however, things went downhill quickly after they returned to Bathurst.

"I think it's important to empower carers and give them the resources they need and support networks they need," Ms Agland said.

"It might be different now that they have Orange Hospital, but back then it was taking people from regional areas where they live and [where] they've got their support network and dropping them down in the middle of metropolitan areas where they don't know anybody, they don't know how to get around - things like that are very challenging."

Ms Agland is a nurse and has worked in palliative and oncology settings.

From a health care perspective, she said supporting carers in a home setting is a crucial part of the health system as it provides relief for the hospitals.

The more support and resources that can be made available to people caring for their loved ones at home, the more weight will be taken off the health care workers.

"It's something that needs to be better supported because as our population grows and ages, it's only going to become more of a stress on our health network," Ms Agland said.

PanKind is the only foundation in Australia dedicated to pancreatic cancer. It has organised Remember September, where people walk 63 kilometres to help raise funds and awareness.

Ms Agland and her sisters are participating in the initiative and have already raised more than $3000 between them.

They hope PanKind will grow to the point where pancreatic cancer initiatives are just as prominent as other organisations such as breast cancer foundations and Camp Quality.

"Anything that can get pancreatic cancer out there, because when you're front and centre, that's when you start getting the dollars for research," Ms Agland said.

"The more research you can get, the more likely you are to have cures, the more likely you are to have really effective treatments and support the carers too."

SURVIVOR: Braden and Melissa Sullivan defeated the odds. Photo: CHRIS SEABROOK

SURVIVOR: Braden and Melissa Sullivan defeated the odds. Photo: CHRIS SEABROOK

Meanwhile, one local lady who defeated the massive odds stacked against her was Melissa Sullivan, a pancreatic cancer survivor who was diagnosed 10 years ago.

Ms Sullivan was told she would have an eight per cent chance of surviving over five years and, if she did, she would never be able to have more children.

A decade and two children later, she is sharing her story with anyone who wants to listen, trying to push pancreatic cancer into the spotlight.

Similarly to Ms Agland's grandmother, Ms Sullivan and her husband Braden had no warning that their lives were about to change drastically.

Initially, Ms Sullivan believed she had a gastro bug, but after being sent for an ultrasound and CT scan, she was told she had a mass.

Even then, cancer wasn't mentioned. The assumption was gallstones and Ms Sullivan thought she was going into surgery to have her gallbladder removed.

Only then did she find out the grapefruit-sized mass was on her pancreas.

"It was within two weeks that we found out what kind of tumour I had," Ms Sullivan said.

"At that point, I was sent for tests to see if it was a benign tumour and if there were any other masses in my body at the time.

"We went home for two weeks, then were sent back down to have what was called a whipple procedure, which was a 10-hour operation to remove the tumour, the head of my pancreas, half my stomach, duodenum, part of my bowel and then use my bowel to put everything back together."

With two kids, a full-time job and a partner recovering from a major surgery, Mr Sullivan had a lot on his plate.

He was lucky in that his wife's parents were a massive support and there was always someone with her. But not everyone is afforded that help.

With very little knowledge about pancreatic cancer, the recovery and what help was actually available to them, Mr Sullivan said "it's about time" that an initiative to support the support crew was created.

During Ms Sullivan's time in hospital, they say they were never told what financial help was available to them and what counselling was available. They say they had to go looking for answers.

"I had a good support network with her mum and dad, so that helped a lot," Mr Sullivan said.

"There was a lot of stuff that we didn't know that we could actually get help with until after it was all done - like the accommodation, the rebate on fuel, stuff like that; we didn't know any of that."

Throughout the whole process, Ms Sullivan was happy to help further educate people on pancreatic cancer.

She allowed medical students to be present during procedures and she donated everything that was removed from her to research.

Ms Sullivan is one of the lucky ones in more ways than one: she not only survived pancreatic cancer, but had two children after her surgery.

She is more than happy to speak with people going through the same situation and thinks the PanKind initiative is a great idea.

QIMR Berghofer Medical Research Institute is currently asking people who are the primary carers of a pancreatic cancer patient to take part in the PRoCESS study.

Anyone caring for a loved one who has been diagnosed in the past three months can register their interest or find out more by visiting www.pankind.org.au.

This story 'We found out what kind of tumour I had': Who cares for carers when lives change? first appeared on Western Advocate.