It was the decision to take up jogging that did it…..

It was this decision, that upon reflection, I wish I had made earlier but I have since learned that you can’t change the past, you just have to try your best and move forwards. 

Towards the end of 2014, with my daughter’s encouragement, I decided to try jogging. It was the process of trying to get the ‘girls’ comfortable and the after-effects of a chaffing sports bra that led me to discover a lump in my breast. From there, it was a very rapid trip through ultrasounds, needle biopsies, a core biopsy, a CT scan and a bone scan. I still have clear memories of a 4.30pm rush to get across the city to a last-minute Breast Surgeon appointment on a Friday afternoon. ‘Bless his cotton socks’ for waiting.

It wasn’t in that particular appointment, but at another that soon followed, when the poor surgeon had the difficult job of telling me that, not only did I have a breast primary, but the cancer had spread to multiple locations in my liver, lungs and bone. It had metastasized.  I had advanced breast cancer and there would be no cure for me.  I held it together long enough to leave the room but didn’t make it past an empty hallway office before I lost the plot. As a science teacher, I knew enough to understand the implications of the diagnosis. As a single parent, my overwhelming fears were centred around what and how to share with my children.

At this point, it was very close to Christmas. I had been fortunate enough to start treatment with my wonderful medical oncologist, but my mind was in a whirl and I did not know anybody in the same situation as me.  I reached out online and found out the Google is not always your friend – surprise! Also, I found that there are online peer support communities through organisations such as Breast Cancer Network Australia (BCNA,) who, in addition, provide excellent information about all things breast cancer. Finally, I discovered that Breast Cancer Care WA.

Two of the most important Breast Cancer Care WA services that I have used are counselling and peer support groups.  Counselling helped me work through difficult periods such as my reaction to my diagnosis, my children’s reaction to my diagnosis and navigating from working full time to my eventual decision to pause. The support group has been a lifeline! I remember feeling ecstatic after joining. I met other women who had been living with metastatic cancer for a considerable period and I began to hope, or even believe, that might be possible for me too. Upon arriving home, the music was turned up loud and there was grooving around the lounge! It felt like such a big weight had been lifted because I actually had people who understood how I felt.

That was seven years ago and there has been plenty of milestones in that time.  Around four months after I began treatment, an opportunity arose to take part in the Monarch II clinical trial. I was very eager to take part and am so glad that I did. I was fortunate to be in the group taking the trial medication as well as the best practice treatment. The side effects were rocky at times, but the treatment resolved the tumours in my liver and lungs and stabilised the tumours in my bones.  I was able to continue working and start on my wish list – which included as much travel as I could squeeze in!

The main bump in the road was the discovery of a metastatic tumour in my brain on New Year’s Eve 2018 – what is it with me and the holidays! Luckily, it was found to be operable and after another quick bit of travel, I was admitted into hospital on Valentine’s Day, 2019 – see what I mean! The operation went smoothly and after recovery, the tumour vault and the surgical path were treated with stereotactic radiotherapy.  At this point, my cancer was considered to have progressed and I had to leave the clinical trial.  The good news was, that during the time I was on the trial, similar new drugs had progressed and were available, so it was a relatively smooth swap to a new regime.

The discovery and treatment of my brain secondary did really bring home to me one of the hardest issues faced by all metastatic cancer patients – the lack of a ‘life crystal ball’.  You are very aware that bad things do happen, but they can still take you by surprise. I was virtually symptom-free prior to my diagnosis and the discovery of the brain tumour.  Planning for the future takes on a whole new level of difficulty.  In my case, after six years of treatment, I was finding work increasingly challenging. I thought long and hard and did a considerable amount of planning (and finger crossing) before making the choice to leave my job. With that decision comes the dilemma; I hope to stay well long enough to enjoy my ‘retirement’, but I also hope that I have budgeted carefully enough to have the means to do so.

And so, to words of ‘wisdom’… (insert silly face emoji)

To family, friends and colleagues, some breast cancer treatments don’t involve being bald. For metastatic patients, treatment is a marathon that often changes route but never ends – not a sprint. Some of us make it further down the road than others and it is hard to predict or plan your race. While we can look fine ‘on the outside,” it can still be tough.  We are unlikely to want to live in the ‘cancer space’ all the time but the occasional check-in is nice. Sometimes our response is to smile and move on and sometimes we want to share all the gory details – hang in there!

To those people who have had their world rocked by a diagnosis of metastatic breast cancer. I can no more tell you what it is going to be like than I can convey to you exactly what it is like to give birth – it is a unique experience for all of us.  But I can tell you a few things that I found to be true:

  • Google should be used with utmost care,
  • Keep an open mind about possible treatments,
  • Listen carefully to your oncologist and ask questions when you need and lastly,
  • Seek out both professional support and the support of your peers – the benefit is immeasurable.

Finally, moments are for both seizing and living. From the beauty of a flower, the comfort of a hug, the wonder of travel/art/food/nature (insert your passion here) and time with those we love and enjoy. Pause and savour whatever pleases you.

To learn more about metastatic breast cancer click here.