Day 1 #HAWMC
I write and speak about many different aspects of health and in many different fora, but my blog goes right back to my first foray into health activism. Here’s the back-story to Journeying Beyond Breast Cancer, which continues to inspire and inform my role as a patient advocate.
Following my diagnosis of breast cancer, I underwent nine months of treatment – surgery, chemotherapy, radiotherapy and brachytherapy. I felt as if I had a new full-time job on my hands, a project which took up all my time. It was structured around appointments and moved through defined stages to a clear end goal. While I found the treatment gruelling at times, I had my family and medical team behind me. It was only when treatment ended and that structure fell apart, that the full impact of what had happened hit me. I felt cut adrift. There is an expectation that when you walk out of hospital on that final day of treatment, your cancer story has ended, but the reality is that in many ways you story is only just beginning.
The apparent randomness of a cancer diagnosis can shake your sense of identity to its very core and afterwards nothing will ever feel certain again. Facing your mortality at an early age changes you. In my search to make sense of the experience of cancer and integrate it into my life, I started Journeying Beyond Breast Cancer.
What began as a personal story has expanded over the years to encompass many different stories and I like to think of this online space as a mosaic of all our stories. Just as cancer is not one disease, our experience of cancer is not just one story. We need to give each other space to share those stories that don’t fit the conventional cancer narrative. In sharing more diverse stories, we build a richer community of storytellers.
Cancer strikes a severe blow at our sense of self and our sense of past, present and future. The apparent randomness of a cancer diagnosis shakes our very sense of identity to the very core and nothing will ever feel certain again. As we tell our story, we rebuild our wounded selves, learning to integrate our past, present and futures selves. Learning how others walked this path can enrich our own path of discovery.
Those who know me well, or who have heard me speak, will probably have heard me quote from one of my favorite books, The Wounded Storyteller. In it, the author Arthur Frank quotes something quite beautiful from nobel peace prize winner and theologian, Albert Schweitzer, and each time I read this quote it reminds me of why I became a patient advocate and health writer (I’ve swapped him for her when I quote this):
Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in … need obtain the same help that once came to her . She no longer belongs to herself alone; she has become the sister of all who suffer