“My stories are my trail of crumbs leading back to my heart and my innermost thoughts,” writes a woman living with metastatic breast cancer.
For the first six months or so after my diagnosis of metastatic breast cancer, I had the hardest time talking about my cancer with anyone. Even just the thought of knowing I have cancer was enough to bring me to tears, let alone having to talk about it without tearing up. My emotions were all over the place at the beginning, partly from being forced suddenly into menopause and becoming estrogen deprived. Between starting chemo and losing my hair to all of the appointments and questions I had, it was a lot to process. Friends and family always wanted to know how things were going and how they could support me, but some people were just downright nosy, for lack of a better term. I often would be asked, “How are you doing?” To which I’d reply, “I’m doing well.” This usually was followed up with a head tilt, a not-so-subtle leaning in closer, and in a much quieter voice they’d ask, “How are you really doing?” Some days I just “really” didn’t want to talk about it.
One of my favorite nurses guided me to CaringBridge early on in that first week after being diagnosed. She was a breast cancer survivor herself and knew exactly what I would be dealing with as far as sharing updates and all the emotions that come with a cancer diagnosis. CaringBridge is similar to a blog in many ways, yet it can be more private if you want it to be. You decide what and how much you want to share. There is also the option to add a planner for help with rides or other needs you may have. You can add a GoFundMe or even meal trains. CaringBridge’s mission is “to build bridges of care and communication providing love and support on a health journey.”
My sister was the one who started my CaringBridge page for me when I was too overwhelmed with the way my life had changed and all the appointments at the time. I would give my sister the details of my update and she would post something for me. About six months or so into my treatment, I finally was emotionally ready to share my updates in my own words. CaringBridge is a safe space to share updates without the trauma of having to repeat yourself over and over again. There is something I find so healing in writing and letting out those words that need to come out.
Once I started writing about my experiences, I also found that I wanted to read more about others with a similar story to mine. I discovered and followed many personal blogs, Facebook pages and Instagram accounts of people all over the world who shared my diagnosis and challenges. Reading stories of their good news filled me with inspiration and hope, while reading stories of their bad news gave me compassion and empathy. Over these past seven years a number of the people I had followed from the start of my diagnosis have died of metastatic breast cancer. According to METAvivor, more than 41,000 people die of metastatic breast cancer each year. A few of those bloggers are still out there writing and advocating today. As time has gone by, I am continuing to discover new people to follow as well. And although there are those who have not survived this disease, their stories remain.
I never imagined seven years ago when I could barely say the words “I have cancer,” that I’d be one of the many patients with cancer out there sharing my story. I also never thought I’d have metastatic breast cancer either. I encourage all patients with cancer to build those bridges of care and communication not only with loved ones but with others with a similar diagnosis. And please know that sharing your story does get easier with time. It makes my heart happy to know I am connecting with people all over the world and hopefully making a difference in the lives of others, as those who have gone before me have helped to pave my way by sharing their stories.
The stories I share with you are my legacy, in my own words, destined to survive long after I am gone to give inspiration to someone somewhere out there. My stories are my trail of crumbs leading back to my heart and my innermost thoughts. Let my words be your guide to help you navigate this life with cancer and fill you with hope.
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