This one is breast cancer...

I was 37 years old when I was diagnosed with grade 3 triple negative breast cancer. I am a third-generation breast cancer “recipient” - not that anyone wants to be diagnosed with breast cancer.

My earliest memory of breast cancer was when I was six years old. My grandmother was diagnosed with breast cancer in 1984 and while visiting us from Fiji in 1988, she lost her breast prosthesis in a car accident where I remember my parents desperately trying to find her a new one afterwards. I also remember seeing the mastectomy scar on her chest when she was dressing but I never really thought much about it as it always seemed like a part of her. She died when she was 62 years old from breast cancer. I was 12 years old at the time and managed to convince my mum to let us visit my grandmother in Fiji before she passed. I remember saying to mum “what if this is the last time we see her?” not realising it would actually be the last time we saw her. Fast forward a few years between 2003 and 2013 where all three of my mum’s sisters were diagnosed with breast cancer, the second youngest being diagnosed a second time in 2013. Come 2019, I was diagnosed.

My story began on my daughter Annika’s fifth birthday when visiting my breast surgeon for a follow up appointment after my annual MRI revealed a growth. I had been visiting my surgeon every six months since I was 27 years old for an MRI or ultrasound because I was BRAC1 positive. Usually, my scans would show some sort of anomaly where a biopsy would reveal it to be a fibroadenoma. On this day I brought my three and five-year-old to my appointment – they were drawing on their pieces of paper on the floor of his office when my surgeon broke the news to me. After ten years of hearing “it’s just a fibroadenoma” I heard “this one is breast cancer”. The diagnosis didn’t sink in at first and I remember my breast surgeon telling me to take a breath before I asked, “what do we do next?”

I rang my husband when I left the appointment, then rang my mother in New Zealand and told her “I need you to come and look after my kids.” I messaged my close friends saying I would need some sort of sounding board as things were about to become very difficult.

I had a holiday booked in Singapore in two weeks and I was determined to go. Running away was the first thing I thought of as well as “how do I make this go away?”. I opted for a bilateral mastectomy (prophylactic on the left) and told myself “no chemo. No radiation” despite triple negative breast cancer usually requiring chemo.

I had my bilateral mastectomy on 17 July 2019, which was 25 years to the day that my Grandmother passed from breast cancer. A week later I was called back in to have a full axillary clearance as it had spread to other lymph nodes. My tumour was 8mm. I would never have found it on my own. Routine scanning found an aggressive cancer and from there I had five months of chemo, 28 cycles of radiation therapy, portacath in and out, a full hysterectomy with ovaries out (thrust into menopause at 38), and then COVID hit, leaving me to have the last part of my reconstruction at the end of August 2020. I wasn’t allowed anyone at hospital with me – COVID in Victoria had kicked off, and there were heavy restrictions in Brisbane too.

Pre-COVID, my mother flew in and out of New Zealand every 2-3 weeks and would stay when I had chemo or surgery, and my aunts would fly in and out of Melbourne when my mum or sister couldn’t visit. My husband still had work commitments to tend to as I had completely given up work because I was physically and mentally unable.

While working as a physiotherapist I treated women post breast cancer surgery. For me the transition from health professional to patient was terrifying. I had seen what happens through my work and family. But it’s like that saying, “You don’t know until you know”.  I didn’t understand how it physically and emotionally felt to be the woman who was diagnosed and treated with breast cancer. I do now. I understand how you are given so much information that you don’t know where to start and your brain starts to pick and choose information to accept. I remember one of my patients giving me a card that said "take one step at a time and make decisions along the way” which has always stuck with me. I understand now what it is to physically drag yourself out of bed just to walk 50m up the block because “it will help you feel better”.

My daughter who is now six years old, has asked several times “when I’m big will I have to go and see the doctor and have my boo boos cut out like yours?” and “I’m not going to get that candy thing, you know the boo boo candy thing you had”. She struggled with my diagnosis at five years old and for some time she thought it was her fault I got cancer. We told her and her brother, my boobs were making me sick and that’s why I had the surgery. We never really mentioned the word “cancer”. Losing my hair was a big thing for my children, but we explained to them the medicine was making me better and was making mummy’s hair fall out, but it would grow again. My three-year-old boy would say he liked my long hair and would regularly run his hands down the sides of my face, over my ears and to my shoulders to show me how long it should be.

Throughout my breast cancer journey I came to appreciate the small things which ultimately made a big difference. Whether it was cards from my patients, messages from friends in the middle of the night saying, “just thinking of you”, or mums offering to take my daughter to school and bring food home, it all meant a whole lot to me. The support from my family and the strength of my mother to step in made the hard times more bearable, and their support through each chemo session spurred me on. I had always referred my patients to the Breast Cancer Network Australia (BCNA) resources while working in health care but while going through my own breast cancer journey the sense of community I felt from the BCNA resources like the “my journey” pack helped me to process that everything I was feeling was “normal”. Even the seemingly small things such as my eyebrows and eyelashes growing back, or walking around the block without stopping were my biggest rewards! It really is the small things that make a big difference.