Sue has been a nurse for as long as she can remember. She has two grown-up children and one grandchild, who all live in Christchurch. Sue moved from Christchurch to Auckland following the earthquakes and eventually settled in Whanganui, where she now lives with her wife, Jo.
Sue has had a successful career, rising through the ranks in the healthcare sector. She’s managed three retirement villages, worked as a regional manager for a home care company, and now works in a senior nursing leadership role. For all intents and purposes, she is active, fit and well – except that Sue has also been living with myeloma for the past 17 years.
“It was an absolutely accidental finding,” she says. It was 2007, and Sue had been to the doctor because she was feeling tired. She thought she might be iron-deficient, but to make sure nothing else was going on, her GP decided to run some other tests as well.
“I had a whole myriad of tests done. With one of them, the lab came back and said, ‘Actually, we think with this reading, you should probably have this new test for serum free light chains.’ And just like that, they found it.”
Even with her nursing experience, Sue found it difficult to come to terms with a myeloma diagnosis. “I think there’s this thing when you’re told you’ve got cancer – and especially 17 years ago – where you do sort of immediately start sizing yourself up for a box.”
One thing she found particularly difficult was telling her friends and family the news. “It was devastating for them,” she says. “I just felt for them, because I couldn’t make them feel any better about it.”
It was February when Sue was first diagnosed, and she was initially told that because her myeloma had been caught early, she might not even need to start treatment that year.
“But by the middle of the year, I was on oral chemo and dexamethasone. That didn’t work, so in September I was having my first transplant at the Bone Marrow Transplant Unit in Christchurch.”
After three weeks of strict isolation and a period of recovery, Sue was able to return to work and get on with life as usual. “I got a fiveyear remission out of my first transplant, and then we had to start treating again. That was sort of year-on, year-off treatment, until my second transplant in 2018.”
Sue had three years in remission following her second transplant, and then had to look at what options were available to her. “We tried chemo again, but my body doesn’t seem to respond very well to boring old chemo! So they suggested a third transplant, which I’ve since learned is quite unusual.”
In the midst of preparing for her third transplant last year, Sue and her partner finally got married. “We eloped to Coromandel and then came back to Whanganui. We had a family and friends party here – that was on the Saturday night – and on the Monday I started the transplant process. It was the big high before the impending low, but it was lovely to have that time.”
And she’s not taking the time they’ve had for granted. “We snuck off to the Coromandel again to celebrate our first anniversary. It was lovely and much more relaxed, as last time we weren’t sure there would even be an anniversary.”
Throughout Sue’s 17-year myeloma journey, she’s been incredibly well supported by her loved ones. “I’ve got amazing friends and family – they’ve all been there when I’ve needed them… And sometimes just being there is the best thing they can do.”
Sue is also grateful for the support she’s received from LBC. She attends her local support group and has had one-to-one support from Sally, an LBC Support Services Coordinator. “Sally has been amazing. Particularly for my wife – just being around for Jo whenever she needed support.”
Sue has prepared herself for the likelihood of another relapse. “This is the cancer that keeps on giving,” she says. “So it will come back. But at the moment it’s behaving itself, and that’s good.”
“Certainly a fourth transplant is not going to be an option, I don’t think. So we’ll just have to keep an eye on what else is out there. But I’m absolutely positive there’ll be something.”