Metastatic Breast Cancer Awareness Day

Today, 13th October is Metastatic Breast Cancer Awareness Day. It’s a day that strikes a chord in particular for me because I have metastatic breast cancer. I have been living with it since my original diagnosis, nearly 6 years ago. Metastatic breast cancer is breast cancer that has spread beyond the breast and nearby lymph nodes to other parts of the body (most often the bones, lungs, liver, or brain). Although metastatic breast cancer has spread to another part of the body, it's still breast cancer and treated as breast cancer.

Being diagnosed with cancer is an awful experience. My life flashed before my eyes in the couple of seconds it took the doctor to tell me, “You have breast cancer”. Although I was expecting it after the reactions of doctors at the initial biopsy and MRI, it still floored me. What I certainly wasn’t expecting was the confirmation that the cancer had spread into my lymph nodes and beyond into my bones. The bone scan I had been sent for was clear and since I had no experience of the types of scans used to detect active cancer cells, I didn’t know the subsequent PET scan would show even more detail. So there I was, at the age of 39, about to be married, with children very much a plan, (I like to think that I wasn’t already too old for all that jazz) being told that the cancer had indeed spread into my bones. I went from being told my cancer was curable to only treatable and that now I would have to fight.

My entire life plan changed right there in that second. The cancer was aggressive and advanced enough that time was of the essence and chemotherapy needed to start immediately. I was seen by a fertility expert to see if it was possible to harvest my eggs, however, the process needed longer than I had and required the use of hormones that my cancer likes to feast on. From there, I had everything thrown at me in terms of treatment, treatments that most people are aware of, chemo, mastectomy, radiotherapy, and hormone treatment. A structure to follow is helpful and I was consumed by the immediate requirements.

On my wedding day. There isn’t a life event that hasn’t been impacted since diagnosis.

On my wedding day. There isn’t a life event that hasn’t been impacted since diagnosis.

But there comes a time when those treatments are completed and I wasn’t prepared for what came next. Unless that holy grail of a cancer cure is found, I will live with cancer for the rest of my life. It is mentally and physically exhausting. I live with the fear that my life will be cut prematurely short, I live with the fear that I will know I am dying and that it will be painful. I live with the pain that I wasn’t able to realise my desire to be a mother, watching friends with children experiencing milestones that I will never have. Knowing I will never be a mother or a grandmother, knowing that because of my husband’s very brave and selfless decision to marry and support me knowing that he would also lose his chance to be a father or a grandfather, carries a very heavyweight of grief all of its own.

My life now consists of frequent scans, which usually show some kind of progression and medication has to be adjusted in order to manage the illness. Just as I relax into some kind of a rhythm, a new scan looms and with it the scanxiety of waiting for the results, though we are very lucky with Swiss healthcare and it’s a matter of days only. My illness is a dark cloud that looms over my husband and me, it’s always lurking close to the surface and never lets us get too comfortable. What we would give for the freedom to live without such stress and worry.

Before my diagnosis, I knew very little about breast cancer. The little that I did know, or thought that I knew, was that once it had spread, it was game over, and probably once upon a time, it was game over. But medicine advances all the time. Some of the medication that I have been prescribed in the last 18 months wasn’t even on the market at the time of my diagnosis. It’s why I am so passionately committed to raising funds to support cancer research and raise awareness where I can. While I live with such uncertainty, following a path I would never have chosen, I also wouldn’t be in a position to give back in the way that I am able to if I wasn’t on that path and just as importantly, working on Simply Zoë, trying to make a difference is a positive and energising experience for me. Having cancer is like being in a club that nobody wants to be in with you and you can feel very isolated as there are few people that can relate to what you are going through. Creating Fearless. provided a way for all women to come together as one because what being fearless means to me might mean something very different to someone else and is a fantastic way for all women to support and raise awareness together as one.

I am starting to understand that I can live with this illness, that it’s a chronic illness that can be managed. But it’s not enough. We need to find a cure. And I intend to do as much as I can to help.

Zoe Zenklusen Payne