Janine’s Story

I was initially diagnosed with Stage IIIC breast cancer in May 2013. I had noticed a change in my left breast for some time – it felt like a ridge along the outside wall. As I had been exercising a lot (training for a half-marathon), I dismissed it as just new muscle. One night I realised suddenly that the small ‘gland’ I could feel above my clavicle had been swollen for a few weeks now, and that left breast looked different in the mirror. I couldn’t believe I had ignored the signs.

At the time, we had 5 children aged 6-14 and my mother had recently died. Our lives had always been hectic and my husband travelled a lot for work, so we just got our heads down and dealt with the treatment (chemo, surgery, radiation, surgery again) and its fallout ‒ ‘Keep calm and Carry on’ is most definitely our household motto.

Fortunately, my cancer cells and my body both responded well to the treatment, and I had an amazing support group of friends and family. I took Tamoxifen for 4 years and barely thought about cancer.

Exactly five years after my initial diagnosis, my oncologist was concerned that my tumour markers were elevated. He sent me for CT and bone scans ‘just to be certain it’s nothing’, but it came back with some small metastases in my T10, C3 and a rib. 

It was a very strange week. We had only just returned from a fabulous holiday, I was about to start a demanding work contract which required my full attention, and I was organising my aunt’s funeral. I could not get a handle on the stage IV diagnosis at all. It simply would not fit in my head!

We stuck with the Tamoxifen until the Ribociclib became available on PBS a couple of months later, combined with Arimadex. Life carried on. The meds were kind to me, I got back to being busy and told few people of my diagnosis. I completed my Master’s thesis and began a full-time work contract. We travelled to Europe again.

Then, in Sept 2020, I experienced sudden back pain, which turned out to be a bulged tumour in my T10. It had fractured the vertebrae. Ouch. I had radiotherapy for 25 sessions and eventually regained full movement. I was running again, pain free, by December. Scans at this time showed more tiny lesions in my pelvis, but everything was stable.

At about this time, my father began to suffer small strokes. I was his primary carer, and it was an extremely stressful period from Nov through to Easter 2021, when he died. I was his POA and had to make some difficult medical decisions in his interest. I have never suffered such a level of stress and grief as then.

Not long after, my regular bone and CT scans showed my pesky T10 tumour growing perilously close to the spinal cord, although I had no symptoms. An MRI showed urgent surgery was required, and so I had a vertebrectomy at St V’s Private within a couple of days. The surgery was successful but my right lung was perforated during surgery, making it a long and very painful recovery.

Of course, when you poke the bear, it gets angry and by the end of the year I had some new spots down my spine and in my ribs, along with a two small spots in the liver. It was getting real.

At about this time, I joined Thursday Girls. I had developed anxiety and needed to talk but wasn’t interested in individual counselling. Chatting with a group of women with similar experiences really appealed and alleviated the need to share details with alarmed friends and family. The facilitators are wonderful and I have really appreciated the open and honest discussions with TGs, told with good humour and kindness. I feel honoured to listen to their stories too.

A PET scan last year showed that I had an active liver spot and my new, weight-bearing back pain was due to an active tumour on the T12. After unsuccessful turns with Faslodex and then Capecitabine, I reluctantly began monthly IV chemo and this has virtually eliminated my back pain. I’m also following a nutrition program with an integrative oncology group, learning to meditate and considering my commitment to work. It’s probably time to step away a bit and focus more on my health and life’s enjoyments.

My husband John really has been my rock; we have fun together and I could not be without him. I think we are both just coming to grips with the reality of cancer and its impact on our future. Our children are mostly grown with only the youngest left at school. The disease feels less like a mere inconvenience and more like a threat these days, but I refuse to accept that our hope of a normal, active life for many more years is not realistic. There are still a lot of treatment options available to me and anyway, I want to be a grandma!

 March 2023