Where is the bright side of metastatic disease? | PERSONAL STORY

I wish this was a story about how cancer changed my life for the better, or of being a survivor, but alas, this is not one of those stories. This is my story, a story about being in the 5 per cent who won’t survive, and the even smaller percentage of those who are young.

I was originally diagnosed with early breast cancer two weeks after my 36th birthday in 2013. Caught early, the tumour was only 1.5 cm, and no lymph nodes were involved. A lumpectomy, radiation, and hormone therapy ensued, and after 12 months life went back to being relatively normal, although my awareness was much greater.

My circumstances convinced me to share my story, and soon after my treatment I volunteered my time as a support group facilitator for young women with breast cancer.

Then came 2016. It was always going to be a different year – an emerging relationship and an awesome skiing trip to Aspen – I was on cloud nine.

I had always had back and neck pain, and the pain in early 2016 didn’t seem any different. By July, soon after my 39th birthday and a quick trip to Thredbo, I was unusually tired, had developed shortness of breath and my neck pain had extended down my arm.

September brought the news that I didn’t want to hear. The cancer had spread to my spine. My T1 vertebra had been decimated by a tumour, which was pressing on my nerve. My whole world as I knew it quickly turned upside down.

Emotions ran high, but my being here before got me ready for what needed to be done.
I was quickly given two weeks of radiation treatment and referred to a neurosurgeon in case I needed emergency surgery on my spine.

What a lot of people do not know is that the most effective treatment for estrogen positive breast cancer is to remove the estrogen from the body. For those of us who are not post‐ menopausal, we are very quickly thrown into that state. After a short course of Zoladex, a more permanent solution was taken, and in November I had my ovaries removed.

For me, this was one of the most challenging and difficult decisions of my life, but I kept telling myself it was needed to be able to live with metastatic breast cancer Post treatment,
I have difficulty sleeping. Sleeping through the night without being woken by a hot flush seems a distant memory, one that I dearly miss.

I want to say that I am brave, that I took all this in my stride. In part, I am brave, it’s hard, and difficult, and I do what I need to do to survive. The beast that is cancer doesn’t play by the rules, so drastic action is often required, sometimes before I can fully come to terms with the challenges.

After the operation, I began taking an aromatase inhibitor. It makes my joints ache, so I feel like I have arthritis when I rise in the morning. As the tumour is in my spine, I have a monthly injection of Xgeva, which strengthens the bones, but this too causes further bone pain.

I am lucky enough to be on an efficacy trial of the drug palbociclib. This drug will hopefully give me increased progression‐free time and increased quality of life, but it won’t lengthen my lifespan. I often ponder what that will be, and look down at my bucket list and think.

While I am so very grateful to be on this drug, it also comes with significant side effects.
The combination of all these drugs makes me so tired I can hardly get out of bed in the morning and is playing havoc with my memory. The biggest thing I am currently struggling with is adjusting to the new way I need to live.

While side effects are one thing, it’s difficult to understand the impact it can have on your life in general. I used to be an energetic and active person. My favourite hobby is skiing, I like to ride my mountain bike, play tennis, do yoga, swim, and go to the gym. I have a senior role in a large organisation. I love travelling and going out for dinner and drinks with my partner and friends.

Coming to terms with not being able to do some of these things makes me sad. However, against doctors’ advice, I did go skiing last February in Aspen. While it was awesome to go back and hike the bowl with my boyfriend, I realised I am no longer able to do as much as I used to. Coming to grips with the fact that this is permanent scares me. It’s not going to pass like a cold or flu, it’s going to continue to get worse. I know once I accept this I can learn to be happy, and I understand that I am still able to do a fair bit.

I am grateful for all the people out there who have been a lifeline and support to me, and all those I have met who want to help. It gives me faith in society and makes me smile.
The impact this has had on my relationship with my partner has been challenging. I keep
asking myself why anyone would want to be in a relationship with someone like me. Sometimes I think it would be best to be alone, so that others don’t need to watch me go through this, but I know that those who matter love me and will be there for me until the very end.

I don’t think there will be a cure in my short lifetime, but it makes me glad to know that those impacted by this awful disease in the future may benefit from all that is being done now by organisations such as BCNA.

In the meantime, I’ll enjoy the time I have left. I’m looking forward to a girls’ trip to Europe with Mum, and a skiing trip to Aspen next year. Although there is no cure for metastatic disease, it will have to hunt me down and knock me off my skis before it gets me.

Belinda, NSW

Woman standing on top of snow-capped mountain

Belinda

Issue 79
Winter 2017