“Before I even got diagnosed, 2023 was always going to be my year of gratitude.” Helen is sitting on the couch in her Auckland home where she lives with her husband and son, reflecting on the past couple of years. “Life was awesome. I’d just scored a job in population health at the University of Auckland, and we’d done some travelling as a family to Australia and the South Island.”
It was at her new job that Helen first noticed something wasn’t quite right. “I was typing at work and my left hand started not working properly,” she says. “I realised I was just typing with one hand and texting with one hand, and I thought, this could be a stroke or something… I went to A&E and they said, ‘Look, we think it’s just a pinched nerve.’ But I knew in my gut that something wasn’t right.”
Helen called her GP and managed to get an appointment the next day. Her doctor was concerned enough to send her to the hospital, where she was rushed through to be assessed. After both a CT scan and an MRI scan, she was taken to a ward to wait for the results.
“Eventually, a doctor came in and said, ‘You haven’t been told, have you?’ and I said, ‘What?’ She said, ‘You’ve got a brain tumour.’ My husband burst into tears. I just lost it.”
Helen was booked in for brain surgery the very next week. It was explained to her that there were two possibilities for the type of cancer she had, but that this would only be confirmed after surgery and further testing: “It could either be a glioblastoma cancer which would need to be removed, and it would be terminal because of the size of it. Or it could be lymphoma, which would be the better of the two because there were options to potentially cure it.”
When Helen woke up from her operation, she was told that the surgeon had decided not to remove the tumour because it was quite deep down in an important part of her brain. But they’d taken some samples and sent them off for testing. “He said to me, ‘I think this is lymphoma. I can’t tell you for sure. We’re going to have to wait three and a half weeks.’”
After an incredibly anxious few weeks, the results came back and Helen received an official diagnosis – she had non-Hodgkin large B-cell central nervous system (CNS) lymphoma.
“We found out that they wanted to treat to cure, and I can’t tell you how happy we were. The second part was, ‘However, it will be a gruelling year.’ And I was like, ‘Whatever. Hey, there’s a chance I can live and see my son grow up.’”
Helen was started on MATRix chemotherapy at Middlemore Hospital. “I did one week in hospital, two weeks at home, and that rotated five times without stopping.”
Helen stayed at her mum’s place between rounds of chemo so she could be looked after while her husband worked and took care of their son. She had a stem cell retrieval after the first round, and when her chemotherapy was finally finished, Helen had a month’s break from treatment before her stem cell transplant. Then it was off to Auckland Hospital.
Helen found the stem cell transplant extremely gruelling. “Your bloods go down, down, down. Your emotions go down, down, down. A lot of the time I just thought, ‘Who am I? What have I become? I had an awesome job, a faith I felt connected to, and now I just feel like I have nothing.’ It was really hard.”
Despite the immense challenges she faced, Helen can’t speak highly enough of the support she’s received throughout her journey – from her mum, her family and friends, her healthcare team, and LBC. She says that everyone who helped her along the way is part of her whānau. “Without those people around you, you can feel like you’re going to lose the battle. But I had these people telling me I could do it. I gained strength from people who cared, and it was so far-reaching.”
Natasha from LBC’s Support Services team gave Helen’s mum petrol vouchers to help cover the costs of driving her to appointments, and provided food vouchers for Helen and her family. “Money was so tight – it was really helpful.” Helen also felt relieved to have LBC at the other end of the phone whenever she or her mum needed help. “Just talking to LBC on the phone was really supportive – they were another part of the whānau.”
Helen is thrilled to now be in remission. “I’ve had four MRIs, and they’ve all been clear… Every single time that happens, I celebrate. It’s not just the physical healing, but the regaining of hope and faith, too.”
At this stage, Helen is taking time away from work to fully recover. But her experience of going through blood cancer has influenced her plans for the future. “I want to do something that’s really going to benefit people with disability.”
Although she’s looking forward to finishing her Public Health studies and getting back into work, she’s not in a rush. “I’m taking the time I need to heal, to understand the “why”, and to explore what might be. But also to just live and be grateful for today.”