Allisons story:
“Fighting for timely treatment had a huge impact on me”
Allison was just 34 years old when she found a breast lump in March 2022. She faced a two month wait to get a diagnosis. Then, after chemotherapy and a lumpectomy, Allison was told it would be more than three months before she could start radiation treatment. Unsatisfied with the delay, Allison and her husband Paul sacrificed their house deposit savings to pay for treatment privately.
Ahead of the general election last October, Allison shared her story as she joined us to call on all political parties to take action on breast cancer. Advocating for change isn’t always visible in the public eye as it can range from meetings with Ministers and officials, making submissions and providing evidence and advice. But the election gave us an opportunity to generate attention through the media on what politicians can do to tackle breast cancer.
After finding my lump, I saw a GP and was referred to the breast clinic. I didn’t hear from anyone for six weeks and the wait was excruciating. I was anxious, as the lump wasn’t going away, and my skin had started dimpling around the lump. I was Googling every day with a massive fear of the unknown. I know breast cancer can be very survivable, but cancer is a scary word and it’s too easy to jump to the worst possible conclusions.
I kept calling the hospital, only to be told I wasn’t showing up in the system yet and had to keep waiting. I spent some time trying to find a phone number to call and finally got through to the hospital scheduler. They said they could see my referral and could get me in next week. I don’t know if it was only because I was proactively calling about my appointment, but it pains me to think how much longer I would’ve waited had I not kept chasing it.
My treatment started with chemotherapy, in the hopes that it would shrink the tumour. Then after a lumpectomy in October, I found out the cancer had spread to my lymph nodes. I required radiation treatment, but I wouldn’t be able to start until February. I asked if it was possible to go to another hospital if there was a shorter wait time in other areas, but was told that’s not how it works.
My oncologist said that if it were him, he’d look into having radiation privately. It’d cost up to $30,000, and up to $500 per consultation. Walking out of that appointment, I called a private clinic and was instantly given an appointment for an initial consult two days later.
Delaying treatment doesn’t make sense from a financial point of view, you’ll have more people back in the health system and the problems will keep compounding. It wasn’t a risk I was willing to take, so I paid for the private treatment so I could get started right away. My husband and I used our savings for a house deposit, and my parents helped us out. I feel so fortunate to be in that position and to have those savings in the first place – I know not everyone is the same.
Having to fight for timely treatment, on top of a frightening diagnosis, had a huge impact on my wellbeing. I lost sleep because I didn’t have a plan for how I was going to get better. Needing to constantly fight for myself was such an unnecessary extra hurdle to jump through when I was already sick.
Getting involved with Breast Cancer Foundation NZ’s advocacy work was my way of paying it forward so others don’t have to go through what I did. I’m two years post-treatment and feel so lucky to be here, but I don’t know if I could say that if I didn’t fight as hard as I did for my treatment. I came face to face with death in a way I’d never experienced before and now I have true empathy with that. I want it to mean something, for there to be a reason, so being involved in what little way I can is my way of turning my diagnosis into something positive.
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Have you been touched by breast cancer and would like to share your story? We’d love to hear more about it.
