Invercargill hairdresser Diane is the type of person who just gets on with things. She’s a mum of three and a grandmother to six, and for 30 years she ran her own hairdressing business. “I’m one of those people that’s never had a sick day,” she laughs.
But last year, at the age of 62, Diane was floored by something completely beyond her control.
“There was one day last year – June 15th, to be exact – where it took me three goes to make the bed. And I thought, honestly, I’m getting old, but not this bloody old!”
“I had noticed beforehand that I was bruising very easily, and I’d had bad fatigue. I would often come home from work and pretty much do dinner and go straight to bed – a late night for me would have been 8 o’clock.”
Diane called her GP and was sent off for urgent blood tests. She didn’t have to wait long for the results. “My doctor rang me about 6.00pm that night. We’d just finished dinner, and she said, ‘I want you to put some comfy clothes on and get down to Southland Hospital ASAP. They’re waiting for you.’”
Diane and her husband rushed to the hospital, where she received an urgent blood transfusion and some more tests. “They pretty much decided then and there that I had acute myeloid leukaemia (AML). All my markers were at zero, everything was just depleted.”
“One doctor told me that if I hadn’t gone to get sorted when I did, I may have only had another fortnight, if I was lucky. That was a wake-up call.”
The next morning, Diane was in an ambulance heading up to Dunedin Hospital. She was immediately started on intensive chemotherapy – every 12 hours for the first 10 days.
Diane spent the next four months receiving treatment in Dunedin – her husband stayed in a local motel and her kids drove up from Invercargill to visit her on the weekends. “When I was allowed out during the day, all I wanted to do was sleep – so often we went to the motel, and I just slept. But I tried to do things with my husband, like we’d go out for lunch. It was just to be somewhere else, to try and be a bit normal.”
During her time at Dunedin Hospital, Diane was visited by Deb from LBC and was thankful to have that extra support. “She immediately gave us a supermarket voucher and a petrol voucher.”
Diane’s healthcare team told her that in the long term, she would need a stem cell transplant. “They basically said, ‘Without that, the AML is going to come back, and you’ll die.’ So that was just a given.”
In October, Diane was allowed home for three weeks before heading up to Christchurch to start the transplant process. “So, we had an early family Christmas. We had fish and chips, and later we toasted marshmallows.”
Her kids had given her a voucher for a family photoshoot earlier in the year, so while she was back at home, they took the opportunity to use that too. “I felt so good about that – in case things didn’t pan out, I thought at least the kids would have those memories.”
Diane received her transplant on November 24th. It was initially supposed to go ahead a week earlier, but an infection delayed things. In a stroke of luck, during the delay, a better donor match was found.
Following the transplant, Diane struggled with terrible side effects, including mucositis in her mouth and swelling from excess fluid. She developed diabetes from taking steroids and was dealing with a persistent fungal infection in her lungs. “It was just one thing after the other,” she says. She’s relieved that most of these issues have improved or resolved completely over time.
Diane attends LBC support groups in Invercargill, and although everyone has different types of blood cancer, she finds them a great way to connect with others – which is especially important now that she’s closed her hairdressing business and doesn’t get to spend her days chatting to clients. “It was such a hard decision to stop working. When they told me it would be at least 12 months of treatment, and being the age I was, everyone said, ‘Why don’t you just live life?’ And I thought, yeah, you’re right.”
Although she still gets quite tired, Diane is feeling well and has been spending lots of time with her grandkids. She’s looking forward to a family holiday on the Gold Coast later in the year – something that her children have been planning since she was in Dunedin Hospital. “It was pretty smart of them really. Going through the journey, on days when I wasn’t good, it would suddenly pop up in our family messages: ‘We’re just booking the theme parks, or we’re just sorting the rental cars.’ Things like that really kept me motivated.”
As well as preparing for her family holiday, Diane is also writing a book about her experience with leukaemia for patients and their support people to read. “When I was first diagnosed, I tried to download or find a book at the library, and I found very little. It wasn’t until I was actually in the leukaemia circle that I had access to more of those stories.”
Her advice for others facing leukaemia is to take each moment as it comes. “Just get through this day – or this hour. When you’re having those tough times, it’s just about getting through the next hour.”