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His death should have been a lot easier

Tuesday 28 January, 2020

Jake pancreatic cancer

Photo caption: Jake was diagnosed with pancreatic cancer at just 35 years of age.

Two cancer experiences in the one family couldn’t have been more different. Jake was diagnosed with pancreatic cancer in 2014 when he was only 35 years old. Jill cared for her son until sadly he died just three months later.

“The lead up to his death was a nightmare with no communication between doctors and specialists,” Jill said.

“I know his life couldn’t be saved, but his death should have been a lot easier.”

For Jill and Jake, the nearest treatment centre was in Traralgon, 80kms away. Support services weren’t offered, and she expressed feeling alone and isolated.

“It was just him and me at the time. You know I've got friends and family and everything but Jake sort of preferred that I did everything anyway.

“I took him to radiation, and they said he was far too sick to have it - it was too late in the whole thing. Then he had chemo booked, but by the time that I saw the oncologist – the first oncologist we'd seen, and he booked him in for chemo - he died before the chemo appointment came around.”

Palliative care services to help people like Jake live as comfortably as possible, were not provided.

“We didn't get any,” said Jill. “It's not as if we were miles away from them or anything but we just couldn't get it together and it all just happened so quickly he never actually saw them. They were as frustrated as I was, every time I spoke to them on the phone. 

“I kept saying to Jake don't worry now they've got people to look after you - you won't be in pain and everything… and he was, it was just awful.”

Jake at beach

Photo caption: “Jake was famous for his spectacular backflips, his skills on his skateboard and the beautiful music he made.”

Jill and Jake also had a difficult time accessing financial support through Centrelink.

“He was getting Newstart, but you know every two weeks, he had to turn up at Centrelink. It was just ridiculous. In the end, he just didn’t bother because he was too sick.”

Because Jake was too sick to report to Centrelink, his payments were stopped.

Patients will often be placed on Newstart as they will not meet the severe impairment criteria of the Disability Support Pension. Newstart is an allowance designed to provide support to unemployed people whilst they look for work. People with cancer are often too sick to look for work and can find the process of meeting eligibility for continuation of Newstart burdensome due to treatment schedules and illness. 

ACTION: Cancer Council has made a submission to the Victorian Cancer Plan to improve access to palliative care. We also recommend improving acess to financial counselling services for those affected by cancer. Learn more.

  Jill has melanoma

Photo caption: Jill’s been diagnosed with melanoma and is undergoing treatment.

Jill’s experience caring for her son was so traumatic she was ready to refuse treatment when she was diagnosed with melanoma two and a half years ago.

“When I was diagnosed with melanoma, I was ready to refuse any medical intervention because of the awful experience we had with my son,” Jill said.

“Fortunately, somebody talked me into it, and my experience has been totally different to his.

“I had a melanoma removed two and a half years ago and I was going for three monthly check ups for the following two years and on the very last one they found out it'd spread to the lymph nodes,” she said. “I had to go in and have three of them removed and since then I've been on the immunotherapy and I'm very happy.

“I've got no complaints about my treatment, it's been excellent. But at first after what I went through with my son, I thought, why do they care about me so much. It was like nobody cared about him.”

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If you’ve been affected by cancer and would like to use your experience to help others, please register your interest. 

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