Cancer survivors create social group to help support those slipping through the cracks

Cancer survivors in the Illawarra are helping combat the isolation of battling the disease by creating an inclusive space for those undergoing treatment to seek support, have a chat or engage in fun activities with others who understand the experience.

Erin Chester was three months postpartum when she suffered an unexpected seizure which turned into a shock diagnosis.

“We had a biopsy to figure out why I was having seizures and it found I had a tumour in my brain,” she said.

“I went straight into surgery in December, just before Christmas and was diagnosed with an astrocytoma grade two brain cancer.”

She then underwent radiation and a regime of chemotherapy, which is ongoing.

And although she maintains a positive outlook, the whole experience has taken a toll.

“I lost my eyesight a bit during surgery so I lost my licence. I’m a mechanic, so I lost my job and with two toddlers I was looking for all the support I could get,” she said.

Despite having a very supportive family, Erin found connecting with other cancer fighters difficult, and there were not many groups that were suitable for her age.

“I live in Wollongong where there’s a cancer centre so I was looking for that ‘I know what you’re going through’ kind of support.”

“We found a lot of help for kids which is great and their carers and then the elderly, but in the middle is kind of left out.”

And support networks that seemed more appropriate were targeted towards people with specific types of cancer.

“There’s too many people with breast cancer out there particularly around our ages, so you see a lot of support for them,” Erin said. “Even on the walls at the hospital there’s a lot for flyers and different groups for breast cancer fighters and survivors which is absolutely fantastic, but when you have a diagnosis that you don’t see on the wall you go, ‘Where do I go.’

“I’d love to do that; I’d love to see those people, but I don’t have breast cancer, I have brain cancer.”

Through a mutual friend, she was introduced to Angie Howes, who has endured unbelievable adversity since she was diagnosed with stage three bowel cancer in 2019.

“I did 12 rounds of chemotherapy after the surgery and was hoping that was the end of my journey,” Angie said.

“Unfortunately in the March of 2020 I found out that I had two 10-centimetre tumours growing on both of my ovaries and the chemotherapy had been masking them and they were getting bigger to the point that when I went to see a couple of surgeons in Sydney they could actually feel them by pressing down on my stomach.

“If I hadn’t have gotten those out in time they would’ve burst and I would’ve died.”

She underwent a complicated surgery including a radical hysterectomy, but surgeons also discovered tumours in her stomach lining.

“So whilst I was getting the hysterectomy, they also gave me what was called a peritonectomy where they cut me all the way down and then they pour hot chemotherapy into me,” Angie said.

“It’s a very very dangerous procedure and there’s only a couple of surgeons and oncologists that will actually do it.”

But that was not the final blow for Angie.

After another 12 rounds of chemotherapy, doctors found two spots on her liver.

“Back in again to the same surgeon again and I ended up getting half of my liver cut out,” she said.

“And he also took out any other organs which he didn’t feel I needed.”

“He basically said to me, ‘I’m leaving you with what you basically need because I don’t want the cancer to attach itself to anything else.’

“Just over 12 months later now I’m starting to feel a lot better and it’s never going to happen again.”

Erin and Angie’s journeys may be different, but the pair have bonded and found comfort in their common experiences around fighting cancer.

Wanting more people to be able to access the same support and understanding that they’ve found with each other, they started the Illawarra Cancer Social Group for anyone with any type of cancer.

“It’s about meeting people that are our age and saying, ‘We’re going to go bowling’ or ‘We’re going to go for coffee,'” Erin said. “We’re going to do things that make us feel good.”

“We’ve got to remember that it’s not an old person’s disease anymore, so having these support groups is important,” Angie said.

Eventually they hope to create a website with a directory to local businesses, like cancer-friendly hairdressers, to take the guesswork out of finding a service at an already vulnerable time.

But for now they are just wanting to connect with the community and get the word out there to people who need it.

“If they want to join they can join, if they don’t, they don’t, just as long as they know that we’re here,” Angie said.

“They don’t even have to turn up to things; it can just be a message to talk to someone on days when they’re not feeling great, because there’s plenty of those.

“And it might help them see that there’s light at the end of the tunnel.”

To connect with the Illawarra Cancer Social Group visit the private Facebook group.