Rocking My Disease may seem like a slightly optimistic title but I'm sticking with it because that is my aim. I am very much realistic about this disease and not one for false optimism. Nevertheless, it was the first name I sent my friend and web designer Catherine as a suggested title. She liked it and so it was to be.

It gets a bit negative talking about this all the time and so by sharing information on this blog I hope that when we see each other or communicate, we can talk about other things. I am more than this cancer, it is just one part of me now.

Apologies for taking so long to activate this blog since I originally set it up back in October. Also a big thank you for all the well wishes and offers of support if I need it. There are a few tiny benefits to such a diagnosis - lovely friends drop off meals, I get flowers more often than I used to, and I do get good drugs for my pain relief.

There is a lot of head stuff to get around when you get a stage IV cancer diagnosis and I really needed to get through the first three months of treatment to see what I am dealing with and see how I respond to treatments. It’s been around six months now so here is what has been happening.

I do have some good news to share - I had scans in January and the tumours have reduced roughly to half their original size, so chemo is working and there have been no signs of progression. So I continued on with the chemo protocol as it is clearly working.

The cancer is in my lymphatics, bones and liver. I totally wasn’t expecting that. So given that it is fairly aggressive and had grown a lot in the past six months that I have been investigating this to get a diagnosis, (Covid really slows things down) I started on a targeted therapy that stops cancer cells from multiplying called a CDK3/4 inhibitor, and an aromatase inhibitor that blocks estrogen to my body because the cancer is thought to be estrogen positive as it was last time.

We did a biopsy and the results showed the cancer had changed from oestrogen positive to triple-negative breast cancer, which means that it became aggressive and found a way to have a better chance of survival. It does that in a small number of cases. Metastatic triple-negative breast cancer is a rare cancer with less than 13 people in 100,000 diagnosed worldwide each year, and only 13 per cent of early breast cancers are triple-negative.

So after a month of the estrogen-based treatment, I had to change to the dreaded chemotherapy. Chemo is the main treatment available for metastatic triple-negative breast cancer. I have undertaken some genomic metabolic testing and now have to interpret the results to work out if there are any immunotherapies, targeted or other therapies that may be suitable for me.

I also have to have monthly X-Geva injections for a while to help boost my bone health. It is an osteoporosis treatment given in high doses for bone metastasis and it has its own set of side effects. The main one to watch out for, and the most dangerous, is osteonecrosis, the death of bone cells in your jaw. I will try my best to avoid this one.

For the first little bit after I found out I was fairly ok with it. I thought if anyone had to go through this I was well equipped. I am in a good place energetically, feel strong and supported, and have worked in the field of grief and loss. No big deal.

Later I found it a little more confronting, but I am sure I can still do this.

It is April now and I have just had more scans. I will connect with my oncologist in a few days and will get a specialist opinion next week.

It does change your priorities though. I have three adult children and six grandchildren who I want to spend time with and create memories with. I don’t know how long I still have on this earth plane but I do intend to make the most of my life while I am here. While the official timeline is quite short, even with treatment, some people do live for 10 years or more with this disease.

I like that there are best practice guidelines for practitioners for metastatic breast cancer patients which says the patient is in charge. But in order to make treatment decisions, there is a lot of research involved in case managing yourself and knowing what is going on and what the next steps may be.

So this blog will contain reflections and updates perhaps a bit of philosophy, and maybe some thoughts. I am planning a trip to the Northern Territory, I would like to do the Great Ocean Road, and Tasmania needs a bit more attention. I particularly want to walk those wonderful ancient forests, swim in oceans everywhere, see more sunrises and sunsets, and connect with wonderful people, especially family and friends.

Subscribe below and you will get notified when I post something new.