Carla Janssen and her family
The start of my journey: a shocking diagnosis
Christmas Eve 2013, 2pm. I turn on the TV for my three little kids so I would have a quiet moment to call the breast surgeon I had first seen the day before. He would go on to tell me that I have breast cancer.
A few weeks prior to that moment, I had felt a lump the size of a large walnut or small lemon in my breast while in the shower. After waiting a few weeks to see if it would disappear, I made an appointment with my GP. She couldn’t feel the lump, but sent me through for a mammogram and ultrasound “just in case”. When the images looked suspicious, the radiography doctor performed a biopsy. He immediately booked me in to see a breast surgeon, who told me to call him the next day – Christmas Eve. Hearing the news by myself, with my children watching TV in the room next door, my husband at work, was shocking and devastating.
Further investigations showed that I had a tumour in my right breast and a lymph node that was filled with cancerous cells. A few weeks after diagnosis, I had a lumpectomy, followed by a mastectomy. After the surgeries came an intense and exhausting treatment period: 6 months of chemotherapy, followed by 25 radiation treatments. I also had a total of 17 Herceptin IV infusions. Every chemo appointment was preceded by a blood test. Every other week I saw the oncologist. I must have had 130 days with medical appointments in the 15 months following the diagnosis. There were many dark days, where I felt depressed and anxious.
Talking to my children about cancer
My children were 2, 3 and 5 when I was diagnosed. In the days following the diagnosis I told my children that I had breast cancer: I explained what cancer is and what my treatment would involve. I said cancer cells are sick cells that grow out of control, and that you have to remove or destroy them if you want to live a long and healthy life. I explained to them quite specifically how each step of treatment would work, and what the doctors hoped it would do – from surgery to chemotherapy, right through to post-treatment mediation. Ever since the intensive part of the treatment has been completed, I take a daily tablet to prevent recurrence. I call it my anti-cancer pill.
My children understood a lot of what I explained. I didn’t go into it all in one big conversation – I added information over the course of many short conversations, often at times when we were together as a family: in the car, walking to school or preschool, having dinner, playing in the garden. I wanted to make sure they were always informed, and would never have to overhear information that was new to them.
How I became a dragon fighting warrior princess
One day at lunchtime, soon after my mastectomy and my first chemo, I also made up an additional story for my kids. It was not something I had planned or thought through, it was just a story I started telling and made up as I went along. The story is about how one night, when everyone in my house was asleep, a bird pecked at my window. She asked for my help to fight a dangerous dragon. I got my sword and got ready to fight the dragon. While I was battling the dragon, it managed to scratch me with its big sharp claws, scratching my right breast off. It then started breathing flames, burning all the hair off my head. I finally managed to wound the dragon with my sword. It got scared and flew away, hopefully never to return. I told my kids that I might look like an ordinary mum, but my bald head and the scar where my breast used to be are proof that I am secretly a dragon fighting warrior princess.
Initially I made up the story just for my children. My then 3 and 5-year old boys both love dragons, swords and fighting. My little girl, who was just 2 at diagnosis, loves princesses and dresses. I knew the story would appeal to all three of them. It took me a while to realise how much comfort the story brought not just to my children, but also to myself. Sometimes I look in the mirror and see a woman scarred by breast cancer. Sometimes I look in the mirror and see a dragon fighting warrior princess.
The power of a 3-minute video
A few months after treatment, my family and I made a little video about our breast cancer experience. The video tells the story of my cancer diagnosis and treatment as well as the story of the dragon fighting warrior princess. Working on this family project with my husband and kids, looking back on the last two years and what we’d been through, has been cathartic. It was so great to put our story into drawings and paintings that the whole family contributed to, to find photos that tell our story, to pick the right song to go with it.
We recorded bits of the story on video, too – I bought a princess dress at the local charity shop, and we made and painted our own wooden swords. Then my husband recorded me and the kids at a little castle in a local park. Finally, I put it all together into a 3-minute video.
I’m now in remission, but my doctors won’t tell me that I am cured. We don’t know if the treatment removed and destroyed all the cancer cells. Maybe they are all gone now and I am cancer free. Or maybe a few cancer cells survived the treatment and might start growing and dividing soon. I will have to wait and see what happens. Living with the fear of the cancer spreading to other parts of the body has been overwhelming at times.
The video has been a great way to communicate to others the impact breast cancer has had and continues to have on our lives. My children showed the video and swords at school and preschool, and it’s been a great conversation starter to talk about our family experience with cancer. We also showed the video to our family and friends, who all loved it. Making and sharing our video has provided some closure – I feel so much more understood now. It has enabled me to start looking forward again without being overwhelmed by fear. It is good to know that something positive has come out of this terrible experience.
For tips on how to help children understand cancer download our book Talking to Kids About Cancer.
Find information about breast cancer.
Call 13 11 20 Information and Support to talk to a specialist health professional about anything to do with cancer.