- Diagnosed with myelodysplastic syndrome

Bryan's story

Day 97

Christchurch resident Bryan is 63 and lives with his partner Ruth. He has two grown-up children and has recently retired from running his own company in the spatial mapping industry. He’s always enjoyed an active lifestyle, getting around on his bike and going for bush walks whenever possible.

A few years ago, Bryan began to notice he was slowing down a bit on his bike but didn’t think anything of it. “I just put it down to age.”

Shortly after celebrating his 60th birthday, Bryan went to his GP for a check-up. “The doctor did a routine blood test, and something was a bit low.” This abnormal result was the first real sign that anything was wrong. After 18 months of repeated blood tests and ruling out other causes, Bryan finally received a diagnosis: myelodysplastic syndrome (MDS).

He started on a chemotherapy drug called azacitidine, which worked well at getting things under control. The next stage of treatment was an allogeneic stem cell transplant. In May 2022 Bryan received the transplant, which used stem cells collected from his son. In the period that followed, everything seemed to be going smoothly – until day 97. Just three days short of the 100-day mark, Bryan’s stem cell graft failed.

“On day 100 you’re normally safe.”

Bryan was due to receive a second transplant at the end of 2022, but devastatingly, he relapsed in November and was no longer well enough to go ahead with it. “The offer of a second transplant was taken off the table.”

In August 2023, Bryan received the life-changing news that his diagnosis had progressed from MDS to acute myeloid leukaemia (AML). “That was when it started to take off, full steam ahead.”

He receives weekly blood transfusions to top up the blood components that his body can’t produce enough of on its own. After being declined funding through Pharmac, Bryan is now self-funding a new drug called enasidenib to treat the AML. While the medication is working at the moment, Bryan is realistic about what the future holds. “This is certainly not a cure. It’s just prolonging the inevitable.”

“The leukaemia is just really racing to go, and this drug’s holding it back. It sort of reminds me of the All Blacks versus South African scrum,” Bryan says. “Eventually, I guess the enasidenib will be the first to move, but at the moment it’s extending my life.”

“If things go wrong, I might only have two or three weeks. You know, they thought I might have three months, and that was probably a month ago.”

Bryan’s biggest supporter through all the challenges has been his partner, Ruth. “She’s been an absolute rock,” he says. “I think sometimes the journey is harder for the partner than for the patient.”

“Things like when you get chemo brain and they tell you something, and it doesn’t stick, and you have to ask again and again. And with the fatigue, you know, she’s just having to get up and do everything around the house.”

LBC has also been there for Bryan throughout his journey. He’s had one-on-one support from Helen, one of LBC’s Christchurch-based Support Services Coordinators, and he attends the Blokes with Blood Cancer group, as well as an online support group for patients receiving allogeneic stem cell transplants.

He’s enjoyed attending LBC events in Christchurch. “They’ll have a morning tea event and have a speaker – it might be a pharmacist, a nurse, or a psychologist. They’ve been good.”

Ruth has also found support through the LBC Support Person Connect Facebook page.

Throughout the difficulties of the past several years, one constant in Bryan’s life has been art. “I’ve been an artist since about the year 2000, mainly working with pastels.”

Over the years Bryan has entered art competitions and had his work exhibited in galleries. Following one exhibition, he had some unsold artworks sitting in his studio. Instead of letting them sit there and collect dust, Bryan had the idea of donating them to the haematology ward. He suggested it to the hospital staff. “I said, ‘Don’t feel like you have to take any of them, and don’t be embarrassed by taking all of them.’ And they took all of them.”

Bryan’s art now takes pride of place on the hospital walls. “They hung them really nicely around the ward. They seem to be universally liked by staff and patients.” It’s a powerful way for Bryan to give back and show his appreciation for the healthcare workers who have looked after him during his journey. “I’m always very grateful for the care that I’ve received,” Bryan says.

Now that he’s retired, Bryan has had more time to spend on his art. At the moment he’s doing some paintings for his son. “It’s reasonably sedentary and I can do it in small goes.”

His focus now is on tying up loose ends and making things easier for his family once he’s gone. He’s planned and paid for his funeral and is sorting through all his belongings. Bryan laughs, “Your kids don’t want your s**t, basically!”

Despite the enormity of what lies ahead, Bryan has held on to his sense of humour and maintains an optimistic attitude. “I’m sort of philosophical and positive in my outlook.”

He’s intent on giving back and supporting other patients who are on a similar journey. “It’s what you put into it that matters. I always support what I can – even if it just makes a difference to one person.”

When talking to Bryan for this story, it was clear he was a man passionate about life and with a deep love for his family. It’s with heavy hearts we share the news that Bryan passed away on February 2, 2024, just before his 64th birthday. Our thoughts are with his partner Ruth, his whānau, and everyone who had the privilege of knowing Bryan.