So this April, we are asking cancer patients, carers and family who have experienced advanced or terminal cancer in the last five years, to call Cancer Council 13 11 20 Information and Support.
By sharing your experience you’ll help paint a picture of the difference that palliative care can make to people’s lives, as well as the impact of gaps in access to palliative care.
Your stories will also help inform and strengthen the services Cancer Council provide to people with advanced or terminal cancer across NSW.
When Mitch’s mum, Dianne, learned she would likely die as a result of metastasised breast cancer, her doctor told her she need not suffer pain. Dianne died in 2015 aged 69, six months after stopping active cancer treatment. In the end, her family says she was in dreadful pain that could have been prevented with better access to palliative care.
Dianne lived outside a large town in regional New South Wales. Her primary carer was her 72-year-old husband, Tony, assisted by family. At the time of her death, there was just one palliative care specialist nurse who doubled as a trainer for other nurses in the wider regional area.
The nurse, who was also responsible for coordinating training for other medical professionals wanting to deliver palliative care in the area, was “running pillar to post with his role”, says Mitch.
“It was very much management in crisis. Plus, he had to look after all the region. So, he was the lonesome bloke trying to cover all of that, which is an enormous job when you’ve got 65,000 people.”
Dianne was a former special education teacher who lived her life helping others and once she stopped treatment for the cancer, had expressed a desire to stay at home rather than die in hospital.
“Mum’s pain in her last month was atrocious,” says Mitch.
“Look, it was awful and the thing is you don’t want to see people in pain. One thing mum’s doctor in Sydney had said was “you do not have to be in pain” and he was very forthright in that,” says Mitch.
The system let Mum down. As a society we work hard on preventing cruelty to animals but the system allows our loved ones to suffer horrendously. It is not right. People living in regional areas deserve better.”