Living with cancer, not dying from it
Debbie lives in Upper Hutt with her husband, Greg. She’s a mum to two adult children and a proud Nan to three grandkids. She’s had a busy career – spending more than 30 years working at TVNZ before taking up a job at a GP clinic closer to home.
For many years, Debbie always began her day with a swim or a gym session. So when she noticed some pain in her ribs in 2019, she assumed it was nothing major. When the pain worsened, her doctor suggested she might have sprained her intercostal muscles.
But months later, the pain still hadn’t gone away. In fact, it was getting worse, and it seemed to shift from one side to the other. With an overseas holiday coming up, Debbie realised she was in too much pain to travel. She went to see a GP at work, hoping for some clarity.
When the first test results came back, the GP told her to go straight home. “She said she didn’t even know how I’d made it in!”
The next day, Debbie was sent to the emergency department. Her kidneys were failing – and that was only the start of it. “It turned out I had eight broken ribs, a fracture in my spine and lesions in my pelvis,” she recalls.
A haematologist explained to Debbie that she had lambda light chain myeloma. Shocked, she asked him whether it was going to kill her. “He said, ‘Well, it’s quite serious – I think I could maybe get you a year from the start of treatment.’”
Debbie couldn’t believe what she was hearing. She told the doctor he must have her confused with someone else. But he didn’t. “He said, ‘Your myeloma is going to be difficult to treat.’ On diagnosis, my light chains were over 148,000 – unreadable.”
While still trying to take it all in, Debbie began high-dose chemotherapy and treatment to support her kidneys. Thankfully, her kidney function improved, and the chemo showed promising results.
Next came a stem cell transplant. “They actually had to bring that forward,” she says, “because my light chains had started to move again.” In March 2020, just days before the first Covid lockdown, Debbie was admitted to hospital.
“I spent nearly a month in hospital,” she says. “I got really sick from the melphalan they gave me. I was supposed to have a tandem transplant, but my haematologist said I was just too sick from the first one, and we wouldn’t do it again.”
Throughout this period, Debbie had support from Melody at Blood Cancer NZ, who checked in regularly and organised a TV for her hospital room. It was a small gesture that made a big difference during long, lonely days in lockdown.
After her transplant, Debbie completed another eight months of chemotherapy before moving on to lenalidomide once it became funded.
Unfortunately, in late 2022, Debbie relapsed. “Luckily they picked it up early – and lucky for me, there was a clinical trial going, the MagnetisMM-5 trial being run by Pfizer out of Singapore.”
After extensive testing, Debbie was accepted into the trial and began treatment in January 2023.
“The arm I got randomised to was daratumumab, pomalidomide and dexamethasone,” she explains. “I’d only been on the treatment maybe two months, and I had a stringent complete response – so, in effect, a remission. And I’m still on it now – in January it will be three years on this regime.”
Debbie is aware of how fortunate she is. “I’m very grateful, because so many people could have quality of life with daratumumab, but it’s not funded. I know how lucky I am… It’s hundreds of thousands of dollars.”
Although she’s in remission, Debbie still lives with lingering symptoms. “I’ve always got sore bones, and I’ve broken my ribs again several times – it doesn’t take a lot to do it. Some days I feel really crappy, but then other times I’m like my old self – although I will say I don’t have the same energy that I used to.”
Despite these challenges, Debbie and Greg are determined to keep living fully. They continue to travel when they can, and Debbie stays active in ways that feel manageable. She also attends her local Blood Cancer NZ support group, run by Nicki, which she finds invaluable – both for connection and for practical guidance.
“Nicki’s a really lovely person. She pops into the hospital on chemo days, just to have a chat. I can also ring her if I want to – at different times I’ve contacted her for resources and information. That’s been really great.”
It has now been six years since Debbie was told she might only have one year left to live. The significance of this isn’t lost on her.
“It’s amazing,” she says. “For me, I had to get in the mindset of, ‘I’m living with cancer, I’m not dying from cancer.’ The mental battle is a huge part of it.”
“And I don’t want to be dying yet,” she says with a smile. “I’ve got lots of things I want to do!”
