As an intensive-care nurse, Marie Sams is often around people when they receive heartbreaking news about their loved ones.
But nothing could prepare her for being on the receiving end of that news last September.
"Mum had developed severe abdominal pain and started vomiting," Ms Sams said.
"We took her to the emergency department and they scanned her. The first thing Mum said was 'I hope it's not pancreatic cancer' and the doctor said 'No, no surely it isn't'."
The scans revealed Ms Sams' mother Lucia McQuade's worst fears. She had a tumour on her pancreas and three weeks later was diagnosed with stage-three pancreatic cancer.
"I always knew pancreatic cancer wasn't good news but it wasn't until Mum got it that I did some research - it was really shocking to find out the statistics," said Ms Sams, an ICU nurse at Newcastle's John Hunter Hospital.
"Only three in 10 survive the first year. It has been a year and mum's still with us so that's a blessing."
That year was certainly a tough one for the family.
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Ms McQuade, of Wallsend, has had two surgeries, one which left her in hospital for five weeks, and has also been going through chemotherapy, while Ms Sams and her sister, who both live in the Maitland area, have been sharing the load to look after their mother.
"Seeing your parent go through that, it's like roles are reversed," Ms Sams said. "It's heartbreaking.
"I can see her wasting away before my eyes. It's just really difficult."
A team of researchers are hoping to assist with some of that burden through a new trial providing psychological support to carers of pancreatic cancer patients.
In an Australian first, the national foundation for pancreatic cancer, PanKind is partnering with QIMR Berghofer Medical Research Institute to conduct the PRoCESS (Pancreatic cancer Relatives Counselling and Education Support Service) Trial.
The trial aims to determine whether having a nurse provide structured counselling and education to carers of people with pancreatic cancer helps them cope with the challenges they are facing. It will also look at whether such a service is cost-effective for the health system.
It's something Ms Sams welcomes wholeheartedly.
"Even though I'm a nurse I've found a lot of the events of the past year very confronting and upsetting," she said.
"My dad died seven years ago so Mum's on her own.
"I get really consumed by the idea of researching every little thing that could help, and reading about how bad a cancer that it is.
"I can't help but think if I'm a nurse and I'm going through this, how other patients of pancreatic cancer might have loved ones who don't have the support.
"I think having someone independent from the situation would be really good, because it's so different to other types of cancers."
QIMR Berghofer Medical Research Institute behavioural scientist (psycho-oncology) Associate Professor Vanessa Beesley said the trial came about due to the substantial impact that pancreatic cancer has on patients and those who care for them. Symptoms of the disease include severe pain, weight loss, jaundice and nausea.
"We've done a lot of research and we know that caring for someone with pancreatic cancer is really tough," Dr Beesley said. "This is a rare disease and it's also a really deadly disease. The average time from diagnosis to death is just five months.
"From previous research we know carers of people with pancreatic cancer are twice as likely to experience clinical anxiety compared with the people they're caring for so that's really, really outstanding.
"They're confronted with the need to assist with those physical symptoms and also in such a short time-frame they're looking at helping them emotionally, financially, legally and spiritually at the end of their life. That's a really big burden to bare for them when they've also got the loss of their loved one."
PanKind CEO Michelle Stewart said most research trials were focused on patients, but those caring for people going through this tough disease needed their own support.
"Due to the quick time from diagnosis to death, the carers are just left almost not knowing what's hit them," Ms Stewart said.
"By the time people are coming to terms with the diagnosis it's getting to the really tough stage of the disease.
"So a carer can't really get out and live their normal life ... maybe the next time they see people they've already lost their partner. It is so quick and so tragic."
The project will assess the impact of counselling intervention on various outcomes, including carers' belief in their capacity to provide appropriate support, mental health, fatigue, supportive care needs and quality of life.
All participants are provided with general information support, but half are also offered counselling and education sessions with a nurse via video conferencing or phone calls to measure their effectiveness.
The counselling is conducted weekly for four weeks and then fortnightly for three months. Monthly sessions are then available until the end of the study if desired.
Dr Beesley said the support would begin from diagnosis, and assist through treatment options and side effects to helping plan for end of life and bereavement support as well.
"We expect that the service will help reduce carers' anxiety and also increase their confidence to adequately manage those physical symptoms and then through that it would be expected to reduce hospital admissions of patients as they can be cared for at home," she said.
"When people feel more confident, anxiety levels go down so we would hope both the pharmaceutical costs and the psychology costs might be reduced across the health system."
A pilot trial at Royal Brisbane and Women's Hospital attracted about half of the carers approached over an 18-month period, which Dr Beesley said they hoped to emulate in the national trial.
Seeing your parent go through that, it's like roles are reversed. It's heartbreaking.Marie Sams
It is hoped that PanKind would take over the service if it is successful beyond the research phase.
"From our perspective once the evidence is there to show that it works it becomes much easier to fundraise for," Ms Stewart said.
"We really hope we can prove that helping carers helps both the patients and the carers and that all the people are affected by this disease have got somewhere to turn to have their issues resolved."
The trial is open to the primary carer for a person diagnosed with pancreatic cancer within the last three months.
People can register their interest in the study and find out more information by visiting www.qimrberghofer.edu.au/process-trial/
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