“I’m not dead till I’m gone,” says Barry, with a trademark twinkle in his eye.

Barry has inoperable brain cancer. Today he is sitting in the chair in his room at Uniting AgeWell Manor Lakes Community, sipping a glass of wine and watching a movie. It’s a golden-oldie and he’s enjoying it.

A steady stream of friends and family have been popping in to see him over the past six weeks, especially his wife Lynne.

There has even been a thoroughly festive cheese and wine picnic in the garden one evening. Everyone laughing uproariously and sharing funny memories.

That’s just how Barry and Lynne roll. Their roots in Werribee go back five generations. They have been married nearly 51 years. They are full of humour, positivity and a determination to make the time they have left together count.

Barry, 76, had been experiencing headaches before he was diagnosed with an aggressive brain tumour in November 2024. The retired sales manager underwent radiation and a gruelling round of chemotherapy but opted not to have further treatment after he was told it would only buy him a few extra weeks.

Lynne explains: “We decided to enjoy what time we had left together with each other and our children and grandchildren, as well of course as our wider family and friends.”

One Sunday the couple was attending the service at St Thomas Anglican Church in Werribee when Barry felt a wave of calm wash over him. “It was this overwhelming feeling of acceptance and peace,” he explains. “The feeling has remained. I don’t feel angry or bitter, I’ve had a good life. It is what it is.”

The following 12 months went by quickly, with Barry doing better than expected, until he had a fall at home. Barry was treated in hospital and discharged to hospice for palliative care.

“He’s tough and he rallied round,” says Lynne, who shares Barry’s dry humour. “He wasn’t actively dying. He was just dying to get out and have a bit of fun and lead as normal a life as possible.”

Nursing Barry at home wasn’t possible. The house is not designed for wheelchairs and Lynne does not have the physical strength to lift him. Knowing a friend of theirs had come to Manor Lakes for palliative care, they investigated.
“The atmosphere felt warm and homey, definitely not clinical, so we thought ‘let’s give it a go” says Lynne. She also loved the bustle of activity and joy in the facility. It was full of life. This meant Barry could opt to do art if he wanted to, take part in trivia nights and enjoy the host of activities on offer.

In February, Barry moved into Manor Lakes for several weeks of respite care and has decided to stay on.

Barry receives holistic care that encompasses physical, emotional and spiritual wellbeing. But he remains firmly in the driver’s seat. He and Lynne prepared an Advanced Care Plan that reflects his wishes both now and into the future. It’s his life – and his dignity and his autonomy that are paramount.

Preparing Barry and his family for what is to come, is one of the ways the staff assist in delivering the end of life care he has chosen. They respect his wishes regarding intervention and pain management and they also take care of his family.

“Everyone is so wonderful here,” says Lynne. “The staff are all incredibly kind and caring. Nothing is too much trouble for them. We live six minutes away, so I’m here from early in the morning until 8pm, and everyone chats to us and makes us feel so at home.”

She’s also grateful that the time spent with Barry is quality time. She’s not exhausted from nursing him and just going through the motions each day. While Lynne misses lying next to him at night, going home to read in bed or do a bit of sewing gives her time to recharge her batteries and collect her thoughts.

The staff, along with Chaplain Vic Pitman-Jones and registered nurse Vinnie Kaur, who is involved in the Dignified and Respectful Decisions (DARD) project by Palliative Care Victoria, are on hand to provide comfort and support. Not only for Barry but also for Lynne. They walk alongside her as she rides a rollercoaster of emotions.

“They totally get it,” says Lynne. “Sometimes I get weepy, sometimes I say ‘why me?’ Sometimes I think ‘why not me?’ and accept things for what they are.”

Living in the moment is bittersweet, laughing and joking with Barry, while constantly aware that the end is close. “It’s comforting to know that I am surrounded by people who know what I’m going through without me even needing to tell them in words.”

Lynne is a retired integration aide, formerly working with children with disabilities. She and Barry have always been community minded. They’re generously sharing their story in the hopes that it will show others walking the same journey the options and support available to them.