“I went into shock after hearing ‘leukaemia’. It’s not something you ever think you’ll get.”
Tanya is speaking from the United States, where she’s currently staying with family. She’s recounting the day she was first diagnosed with acute lymphoblastic leukaemia.
It was 2013 when she realised something was going on. Tanya was just 23 at the time. She had a supportive partner and a job she found fulfilling, but she’d been feeling exhausted and seemed to be waking up with new bruises every day.
“I did a lot of Googling around then,” she says. “But your mind doesn’t automatically go to the worst-case scenario.” She’d had problems with anaemia in the past and thought her symptoms might be related to that.
Then the bleeding started – first from her nose and gums, and then from her legs after shaving them. “One day at work, my gums wouldn’t stop bleeding… My teeth were all red – I just felt horrible.”
She decided it was time to visit her GP. “I thought, my legs are bleeding, I’ve got bruises everywhere, my gums won’t stop bleeding – I think it’s about time that I actually go find out what’s happening. Because now it doesn’t feel like anaemia. It feels like something else.”
The GP ran some blood tests and sent Tanya home, telling her that if anything concerning came through, they’d call her to come back in.
“They called me back within two hours.”
Tanya was urged to go to the hospital that evening for further investigations. As it got late, she felt sorry for her aunt who was falling asleep on the chair next to her hospital bed. Tanya told her to go home. “My auntie went to leave, and then she came back. I asked, ‘What happened?’ She didn’t tell me until afterwards, but one of the nurses came after her and told her she needed to stay with me because this was something serious.”
Tanya was transferred to Auckland Hospital, where she had a bone marrow biopsy and was eventually given the news that changed everything. “They told me to pull in my support people first. I felt like I would be a burden on my partner and aunt who already had a lot on their plates and trying to put myself in front of their needs was difficult to consider. So I decided to go in on my own”.
“I went from being shocked I had leukaemia, to feeling overwhelmed by the information I was being given. That’s when I understood why it’s so important to take someone in with you.”
Tanya was told that she had 94% blast cells and needed to begin chemotherapy straight away. “I was in hospital for a month or two while we went through the induction phase. I was concerned about not being able to have kids after. That was a major thing for me. But it was quick – they said we had no time to freeze eggs before the first round.”
Her medical team advised her to stop working so she could focus on treatment. “I didn’t realise how intense the treatments were going to be. Throughout the whole thing, I just felt constantly sick. Nausea, vomiting – it was awful.”
Once she was in remission, Tanya returned to work. Maintenance treatment continued but life was getting back to normal.
“But then it came back in 2020. Again, I had fatigue, I had bleeding. And the constant headaches that just would not sort themselves out. I was also having infections – I felt very feverish and nothing was helping to sort the fever.” When her gums began bleeding again, Tanya went to her doctor for a blood test – and just like that, her fears were confirmed.
Tanya admits she questioned whether or not to go ahead with treatment the second time around. This time, she knew what was in store. “But after telling those closest to me that I had relapsed, they all wanted me to fight. A difficult choice to make, but I chose to do the treatment. It wasn’t for me, though – it was for them.”
The first time Tanya was diagnosed, she had been living with family and was grateful to have them take care of her while she took time off work. “The second time, I worked throughout the whole process. I felt as if I didn’t have much of a choice. My partner had just lost his job because of COVID. Getting a job proved to be difficult, so I made the choice to work. Thankfully, my boss was supportive of my request to continue working.”
Again, Tanya faced horrendous nausea during chemotherapy. “It was hard. Especially when you’re trying to manage to be online, do the work, as well as coping with the side effects of treatment.”
Realising she needed some extra support, Tanya’s nurse specialist told her about LBC and made a referral.
She was soon visited by LBC Support Services Coordinator Tim. Tanya was relieved to hear that LBC had a support group for young adults – something she felt like she’d been missing.
“It was really nice having LBC support groups the second time round. Because I just felt really lonely for such a long time, after losing the friends I made while in hospital. The people at those groups just understood me.”
LBC also provided Tanya with vouchers for petrol and groceries, which helped take off some of the financial pressure she was under.
“As soon as I finished treatment, I was discharged from hospital and then got straight on a plane to the United States to visit my family. I felt like I needed to do that – I think I earned a holiday after doing treatment and working full time.”
“I came here and got to hang out with my family, and it felt great. It reminded me of why I chose to stay alive – for my partner, family and friends I love dearly.”
Although she’s in remission now, Tanya struggles not to think about the possibility of her leukaemia coming back. The fear of relapse is something she’s been able to talk about with others at LBC support groups, and she knows she’s not alone in feeling like this. She’s doing her best, but admits it’s hard: “We can tend to focus on relapse rather than on living life.”