De’s Story
I don’t remember much after the GP told me I had breast cancer. Just shock and denial. I prided myself on my health – I didn’t have cancer on my radar. I remember thinking ridiculously – breast cancer just isn’t very ‘me’. A busy working mum, I didn’t have time for scans. Getting that lump checked was very far down on my to-do list.
At my first appointment at BCRC-WA’s Perth Breast Cancer Institute, Breast Surgeon Dr Kallyani Ponniah gave me the facts of my diagnosis even as she could see I was falling to pieces. She assured me – You’re in the right place. We can beat this. The next six months are going to be hard – but one year from today you’ll be surprised how you managed to get through it.
Careful and honest words that gave me great solace. And lo and behold she was right because here I am, a year on and life is going back to a new kind of normal.
I had confidence in Dr Kallyani- and also knowing she would be bringing my case to the infamous ‘Thursday morning meeting’ with the rest of the BCRC specialists to determine next steps gave me assurance I was in the care of a whole team.
Because of the very large size of my tumour, the team advised me to start chemo straight away to shrink it. I remember my first meeting with oncologist Dr Louisa Lo. Quietly spoken, confident, and an incredibly perceptive woman who sensed I needed assurance as soon as I walked through the door. “This type of breast cancer is very treatable” – she said as she read through my scan results and began to calmly outline my treatment plan.
The plan was six months of chemo, mastectomy and auxiliary clearance, radiation, Herceptin and ongoing hormone therapy. It was a lot, but it felt good to have a plan.
Chemo was rough. Stanley Tucci (actor and cancer survivor) described chemo as being ‘a living ghost of yourself’ which articulates it perfectly for me. I got every symptom possible; I was so sick some days that all I could do was stare out the window.
On my first chemo day, my breast care nurse Cath organised my million prescriptions for me by writing out by hand what to take when and why. Such a valuable thought when I could hardly remember my own name. Cath would become a steady person to talk to whenever I needed to sound out my options or just to check in with.
Even though I was on very heavy chemo, the tumour didn’t budge in size for a long time. I was terrified about it spreading to my lungs and other organs. Dr Lo talked to me about the clinical trials available at the Breast Cancer Research Centre – WA and knowing that was available gave me and my family incredible hope. Luckily for me, I haven’t had to, as the tumour finally started to shrink.
Another struggle was acute anxiety and depression. My day would often start by waking up crying and unable to speak. I was referred to Dr Francoise Ballantyne (psychologist). I can’t describe enough how much Francoise helped me. She was a safe place to vent my greatest fears, gave me the tools to help myself, told me what I could expect emotionally, and better still, gave me incredible book and podcast recommendations that I could lose myself in.
I also had genetic testing done with Bhavya Vora, a genetic counselor at BCRC-WA. It was based on a simple blood test on my part and a very complex analysis by Bhavya – but he explained my risks in simple language which helped to inform my decision for surgery. I had a unilateral mastectomy and auxiliary clearance with no complications about seven months after diagnosis.
Cath my breast care nurse was the first to help me get into a bra after my mastectomy and to position the fake ‘boob’. I was ready to walk out of the hospital lopsided but Cath stopped me and helped me appear a little more symmetrical – bless you Cath.
Miraculously a week or so after surgery Dr Kallyani rang me personally to tell me that I’d had a complete response to chemo and a follow-up with Dr Lo confirmed I was officially cancer free. So many happy tears, and such massive thanks to my team. I needed to see the PET scan to believe it, then I think I ran around telling anyone who’d listen that I was cancer-free.
After surgery, I got through 25 rounds of radiation under radiation oncologist Dr Yvonne Zissiadis at Genesis Care which is in the same building as BCRC-WA. I was very lucky to have minimal symptoms beyond fatigue, which I counteracted with an exercise regime at Ramsay Health (also at Hollywood Hospital), where I could do a workout with other cancer patients. I also had lymphoedema massage at Ramsay Health.
There were so many people involved in my treatment and I think what really helped me was all these specialists being connected, and only having to go to one place. I didn’t have to figure out how to get to a new clinic for each phase of my treatment or repeat my situation every time. The administration done by Sheena at the front desk in Suite 405 meant that anything I urgently needed direction on was followed up quickly, I always felt supported.
I saw incredible growth in my little family. My eldest daughter (10yrs) made me a cup of tea every day, and my five year old brazenly asked about my bald head and asked if it would grow back my usual shade of pink.
I was so sick that my husband was basically a single parent and a carer for six months, all the while in his own terrified turmoil but relentlessly helming our family. My sister would take over on ‘chemo day’ organising everything so we could collapse once we got home. We felt overwhelmed at the incredible support at BCRC, as well as from family and community. I’ve never felt so loved.
I’ve just started back at work and hilariously my work mates gave me a ‘work in progress’ badge which is so apt. I’m definitely a work in progress right now – I’m scheduled to have my other breast removed by Dr Kallyani and have a double ‘DIEP’ breast reconstruction in December.
To anyone reading this in the middle of the night, as I did, pouring over survivor stories hoping to see myself reflected in them – know that your body is a miracle and it is capable of healing from so much. As Francoise told me “Learn to hold hands with your fear” and seek out little rays of hope, they are everywhere once you start to look.
We are capable of incredible mental resilience. Everybody’s cancer journey is different, be determined in your own survival. Walk on the beach and swim. There is nothing more delicious than the feeling of salt water on a bald chemo head.
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