The second installment of a six-part series on cancer care in the region looks at the room for improvement in palliative care for patients.
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When a clinician asked Barbara Forbes’ husband, “Tell me about yourself, John”, she prepared to get comfortable.
It was a simple question, but the root of the most empowering experience for the Wahgunyah couple in the lead-up to Mr Forbes’ death.
In the past six months without her soulmate, Mrs Forbes has been writing accounts of the treatment he received for fourth-stage head and neck cancer.
“My intention is giving a voice to help others in a similar journey,” she said.
“One of the major things I wanted to reiterate is the importance of being listened to and being heard – our challenge all the way along.
“Doctors and oncologists have a difficult job.
“They’re time poor – I believe the patients and families really suffer, and we did.
“They need to treat the disease, but they also need to treat and listen to the patient and look after the human element.”
To aid this, Mrs Forbes imagines a hub-type space with counsellors and palliative care staff solely tasked with answering questions and developing care plans.
It would come into play from the very first appointment and extend past the end of care.
“As a survivor of somebody who has died, the system dies after they die,” Mrs Forbes said.
“You’re committed for that six months, everyday, and from the moment John died, there was nothing.
“I envisage a process where the oncologist says, you have an appointment here you have to take – which takes the pressure off them.”
Mrs Forbes hoped the Albury-Wodonga Regional Cancer Centre would offer that space.
“We should have been in palliative care the moment they knew John was in stage-four cancer,” she said.
“We never had the dying conversation.
“The patient doesn’t know when to have that, the family doesn’t know, only the social worker or palliative care nurse knows how to have it.”
Mr Forbes was first diagnosed with neck and throat cancer in 2013.
A year following, chemotherapy and radiotherapy was tracking well, until a lesion in his lungs was confirmed as cancer in 2014.
Mr Forbes died in May.
“I cannot explain this loss, it’s too great,” Mrs Forbes said.
“We loved each other so deeply and words mean nothing.
“This has not been an easy thing to do, but John would have expected nothing less of me and I honour him by sharing our journey.”
