When Ernie Oxwell was diagnosed with cancer for the second time in 2015, he and his wife Jan thought it was just a sore throat.
A routine scan showed only a small swelling – nothing to be concerned about – but to be safe, their GP ordered more tests. The results weren’t good. It was a complex head and neck cancer that required a total laryngectomy.
For Ernie, who’d worked as a camera man, voiceover artist, and audio archivist at the National Film and Sound Archives, voice was a big part of his life. With the surgery, he lost that voice, but not the ability to express himself.
“Even when he couldn’t speak, he always had these twinkling eyes. His face would show you exactly how he was feeling,” says Jan.
On that first trip to Lifehouse, arriving with her husband for surgery, Jan had no idea what the hospital would come to mean for her and her family.
Over the next few months, while Ernie recovered on the ward, Jan took on the role of carer. For patients, a cancer diagnosis can be a harrowing time, but for carers – driving to appointments, reading up on treatment options, giving up time and commitments to be there for their loved ones – it can sometimes be even more lonely and confusing.
“It was difficult being a carer but I never felt alone. Never,” says Jan. “I dealt with whatever happened each day as best I could and found that if I got through one day, I could face the next one. There was no point wasting time or energy worrying about things that might not happen and most certainly would change – often within the day.”
During their stay, Chris O’Brien Lifehouse’s Country Club became a home away from home for Jan. Run by volunteers, Country Club invites patients and their families from rural and regional areas to meet on Tuesdays and share stories, tips, and experiences on getting around in Sydney.
“That couple of hours every week was really a special time for me, because I felt like I belonged there,” she says. “Everyone was from the country and out of town, and I just felt at home amongst them.”
So too did Chris O’Brien Lifehouse’s art engagement program Arterie provide a welcome respite from the daily challenges of caring.
“That was the other place I found friendship and support, especially during trying times. It took me out of the seriousness of where I was, and more than anything gave me a chance to relax,” she says.
Soon, Ernie was well enough to return home. When his strength returned, the couple headed off on a cruise around Indonesia to celebrate. It was through their love of travel that Jan and Ernie had met – Ernie having travelled during his time in the tourism industry, and Jan having spent time in Indonesia as a student. In almost every port they visited they came across friends, “and they made a wonderful fuss of Ernie,” says Jan. It was a welcome change from a difficult few months.
When they returned to Chris O’Brien Lifehouse for Ernie’s twelve-month scan, they discovered that the cancer had recurred and metastasized. After an unsuccessful trial on a new immunotherapy drug, Ernie chose to return home for the time he had left.
“When the doctors told him that we were going back to Canberra, he just clapped his hands so hard,” says Jan. “I think he wanted to get himself home, and to get me home too, so that when he did pass away, everybody would be there.”
Friends and family from all around came to say goodbye to Ernie, and after ten days he passed away peacefully at home.
A few months later, Jan returned to Lifehouse to become an official volunteer. For two days every month she heads up to Sydney, where she shares her experiences with new families at Country Club, and volunteers with the team at Arterie.
“I’m very honoured to call myself a volunteer at Chris O’Brien Lifehouse,” says Jan. “During my stay at Lifehouse, I felt safe, happy, and cared for, and volunteering is my way of giving back, a very little bit, of what I received.”
It’s also a way of catching up with the staff and volunteers, who have now become her friends. “There aren’t words to explain how much they’ve meant to me,” she says. “All I can say is that it feels like family. We’ve been through the ups and downs together, and we’re all still here.”
On the first anniversary of his death, Jan and her friends got together to remember Ernie. He was a keen Aussie Rules fan, and a supporter of the Western Bulldogs. “Ernie passed away in mid-April, and in September was the AFL grand final. I suddenly realised that I hadn’t heard one football match all winter – not that I minded!”
For her friends too, the hospital has made an impact. Down in Canberra, they donate their time to knit squares and make rainbow rugs, sew quilt patches, and contribute to the latest Arterie project. Currently, a friend is embroidering a giant number 5 for Lifehouse’s anniversary celebrations.
“Lifehouse has been a short part of my life, but a big one,” says Jan. “It feels strange to say it, but if we had to be anywhere, I’m glad it was here – there really is nowhere else like it.”