Carolynanha’s story

Carolynanha’s story Carolynanha Johnston is an Adnyamathanha Elder and Quitskills Aboriginal Torres Strait Islander Educator.

This is her story…

My parents both smoked and all my brothers and sisters took up smoking. For some reason I chose not to. I guess I made a decision back then that it was something that wasn’t natural and was harmful. Somehow, I must have got that information from somewhere, and I chose not to do it.

With all the information out there now, I can be 100 per cent sure that both my parents had smoking-related illnesses.

My dad had emphysema, diabetes, high blood pressure. My mum had high blood pressure and diabetes. So I was adamant that I wasn’t going to do it in front of my children or my grandchildren.

My family’s experience made me passionate about working in Aboriginal Health and led me to work at Cancer Council SA as an Aboriginal and Torres Strait Island Educator, connecting with members of my community and sharing the importance of taking care of your health. I was passionate about what I did, but never in my wildest dreams did I think cancer would impact my own life like it has.

I returned home from a trip to New Zealand and couldn’t shake a feeling of tiredness. Then one night I kept waking up with reflux, vomiting and a fever. My throat was terribly sore and I could hardly breathe. I called the ambulance which took me to the Royal Adelaide Hospital where I had a chest x-ray and CT scan. I was told that I had a really bad case of pneumonia, but that there was also cancer there. Not long after, it was confirmed that I had ovarian cancer.

My people don’t use the word cancer, they use another word Ngarlakan Minga, or ‘the big sore’. You have to say it really quietly, you’re not allowed to say it out loud because it might give it life.

I think culturally, Aboriginal people don’t want to talk about cancer. That’s the biggest thing I’ve found, first through my work and then through my own experience. I honestly believe that if people talked about it more, we’d be able to share information and break down some of the stigma.

If people are willing to talk about cancer, then they’re more likely to see a doctor when they experience symptoms. Cancer can be incredibly lonely, which is why it’s so important to share your experiences and reach out for help.

I underwent chemotherapy and am now on the other side of my treatment. Now I want to share my experience to help others in my community.

Whether it’s reaching out to Quitline for support to give up smoking, going to a doctor if you experience symptoms, or just sharing your experience through yarning circles, talking is an incredibly powerful thing. The more we talk, and the more information we share, the more we can help each other.