After experiencing cancer, Ian Martin is keen to use his lived experience to set up a support group for head and neck cancer survivors living regionally.
A lump on the neck just below the ear was Ian’s only indication that he had stage three oropharyngeal cancer.
“It was a week from wondering what they were to seeing my GP, he said it’s definitely something in the lymph nodes … but after a couple of weeks they hadn’t gone anywhere,” he said.
“We got recommended to have an ultrasound and a biopsy … a week later we got the results back and it was squamous cell carcinoma.”
From his home in Katandra, he was quickly referred to the Peter MacCallum Cancer Centre in Melbourne for further tests and treatment, where he found out the main cancer was a 10cm tumour in his throat behind his tonsils.
There, he received radiation treatment five days a week for seven weeks, with his wife, Karen, by his side to support him, even as he dealt with throat ulcers that ended up with him needing a feeding tube. He also underwent two rounds of chemotherapy.
“The mental health part of this cancer is difficult. On the outside you’re fine but on the inside it’s not, so it knocks you around a bit,” he said, adding he found the counsellors who visited him and his wife during treatment were very helpful.
“Once we went back home then you had the distance from that support … From my side Karen probably needed support too; the carer does what they can, but they can kind of feel helpless.”
Ian is now keen to organise a head and neck cancer support group for people with cancer and their loved ones in the Goulburn Valley and beyond.
“I’m not sure there’s a support group for people who’ve been affected in a regional area … I want to gauge interest and see if we can get something nearby,” he said.
GV Health cancer care co-ordinator Catherine Pool said as nursing staff, they could provide the clinical care but were limited in that they didn’t have the lived experience of having cancer.
“Support groups provide that for people who really understand what it’s like to live with something,” she said, adding groups are also invaluable to carers and their support people.
“Sometimes you don’t need to speak to a counsellor or you don’t need funding for home help, sometimes it’s good to just speak to someone who has been in a really similar place as you have.”
“Support groups are important in providing support to patients and carers following cancer diagnosis and treatment. Having a relaxed environment to meet up for a chat and cuppa is beneficial to all,” day oncology nurse unit manager Linley Smith said.
“One thing we would aim for is to have more support groups, for all cancer groups. Going forward, we are looking to establishing a survivorship clinic for our oncology patients. A survivorship clinic would enable us to do a needs assessment and enhance communication and co-ordination of care between the oncology team and the local doctor, as well as services that may be of benefit after completion of treatment, like support groups. This will ensure you’ve still got that ongoing support after you finished.”
If you have recently been diagnosed with cancer and require advice or assistance with treatment, contact the GV Health oncology unit on 5832 3777. You can also contact the Cancer Council on 13 11 20.