Dealing with the Loss of Control that Comes with a Breast Cancer Diagnosis

Living with a breast cancer diagnosis is complex, and surreal. With it comes an inevitable loss of control. The experience, as I’ve discovered, can feel like navigating through unknown territory without a map. You suddenly find yourself in the driver’s seat of a confusing medical journey and you’re asked to make crucial decisions in a whirlwind of emotional turmoil.

I remember vividly when I first received the news. The flood of emotions I felt was unrelenting, and the despair was immense. But then, something curious happened–I began to confront that loss of control. Now, I am not one to pray regularly, but I did embrace the concept of Stoicism, and the principle of Amor Fati, which is the Latin phrase for “love your fate.” I carried a token with me through my treatments that reminded me that every day we have is vital, everything has a meaning and we must embrace every moment we are given.

I wasn’t able to control the fact that I had cancer. I also wasn’t able to control the decisions of my healthcare team – specifically my surgeon’s decision to perform a mastectomy. But I could manage how I reacted to it, how I handled my fears, and how I prepared for what was to come.

Initially, I found solace, and distraction even, in physical activity. I committed to keeping fit throughout my diagnosis as if I was training for a marathon. Embodying the spirit of an athlete didn’t just soothe my body but also my mind. It gave me something potent to control, but more importantly, it was a powerful metaphor. Like in a marathon, I reminded myself that I could only run the mile I was in, not the miles that lay ahead or those I had left behind.

Sharing my journey made a profound difference too. Admittedly, speaking about my feelings and fears openly was new terrain, but it became a way of reclaiming my agency. Sharing my journey through various mediums became my outlet, I felt a sense of control in reaching out to fellow women, spreading awareness, and normalizing the conversation about our bodies and breast cancer.

And then one day, I found myself resigned to the uncertainty. This sounds rather morose, but there was a peculiar kind of quiet strength in accepting that I could not control my cancer’s course. I started to focus more on what I could influence – my attitudes, my mental health, my response to changing circumstances and the way I communicated with my care team and loved ones.

Two things became clear: accepting the loss of control was key and extracting what little control I could claim from the process became instrumental. Today, I hope that this humble account could offer you some semblance of that – the reassurance that you’re not alone navigating through this disorienting labyrinth, that it’s okay to grieve, to feel lost but also remember there are parts of this journey you can retake into your own hands.

To any of you who find yourself walking this same exhausting path – remember, that it’s entirely okay and normal to feel like you’ve lost control. This is arguably one of the hardest aspects of living with breast cancer. However, it’s in these moments of vulnerability that we often discover reserves of strength we never knew existed. You don’t have to be the superhero in your story – you just have to be you, one day at a time.

For resources on emotional and mental health support during your journey, I found these links to be quite helpful: Breast Cancer and Stages of Grief, and Your New Favorite 10-minute Meditation. I also wrote my book Flat Please as a resource for other women to let them know that they are not alone on this journey.

Ellyn Winters Robinson

Ellyn Winters-Robinson is a breast cancer survivor, entrepreneur, author, in-demand speaker, women’s health advocate, professional communicator and a globally recognized health rebel. Ellyn's best-selling book "Flat Please Hold the Shame," is a girlfriend’s companion guide for those on the breast cancer journey. She is also the co-creator of AskEllyn.ai, the world’s first conversational AI companion for those on the breast cancer journey. With Dense Breasts Canada and award-winning photographer Hilary Gauld, Ellyn also co-produced I WANT YOU TO KNOW, a celebrated photo essay showing the diverse faces and stories of 31 individuals on the breast cancer journey. Ellyn’s story and AskEllyn.ai have been featured in People Magazine, Chatelaine Magazine, the Globe and Mail, CTV National News and Your Morning, and Fast Company.

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