The Impact of Sharing Your Cancer Story

December 3, 2020
Kim Johnson
Kim Johnson

Kim was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. She turned her experience into change and has since become an activist in finding a cure for cancer. Kim has worked in politics and assisted in the passing of numerous legislative pieces impacting patients with cancer and their families. She is an activist in the field of oncology, nursing and beyond. Additionally, she is a volunteer and champion for a cure with the Leukemia and Lymphoma Society's Light the Night Campaign. Kim has shared her experiences with cancer as a contributor with Cure and through public speaking engagements throughout the United States.

Heal, Heal Winter 2021,

Your cancer story is unique to you, but sometimes the impact of sharing it can change your own perspective on the cancer journey.

When people ask me why I am going to become a nurse, I tell them that it was partly because my sister had cancer. Some give me sad eyes, and others do not speak until I follow-up with the news that she is in remission now. This used to bother me, until two years ago when I was at a conference and a gentleman approached me.

He introduced himself as Patrick and asked if I had some time to talk. We found a quiet place to talk, and he told me that he knew who I was because he had read my articles for CURE®. About an hour into us speaking, I asked him what his role was at the conference and he told me that he was a nurse— and a patient. He had been battling brain cancer for the last four months. I was speechless, as I would never have guessed had he not shared.

Without missing a beat, he saw my face and said, “Incurable cancer never looked so unassuming, right?” I began to apologize but he stopped me, “It is okay. Nothing to apologize for." Initially, he had thought that I was going to apologize for not being able to hide my disbelief that he had cancer. And I was, but I was also wanting to apologize for having shared my sister's story- because she gained remission and I knew he never would. Before me sat an otherwise healthy twenty-nine-year-old nurse who was battling brain cancer, and the guilt of talking about my sister's miraculous recovery filled me with guilt. He thought that apology was even less needed than the first.

That afternoon, I learned a lot from Patrick. He shared lessons on being a new-grad and starting in the field with the right balance of both confidence and humility. We talked about remembering to laugh through the hardships that life presents, the strange trajectory of life and the guilt that comes with it. I chose to share my journey as a caregiver for many reasons, not one of which includes flaunting the good fortune of modern medicine that led to my sister's remission.

Sometimes, that sharing has led to guilt, even before speaking with Patrick, because I know that cancer steals away so many, and I know that not everybody is as lucky as my sister has been in gaining remission. Spending that afternoon sharing our individual stories reminded me that it is not a game of comparisons when we share. That my experience with cancer had a happy ending does not mean that I am required to feel guilt for those whose stories ended differently than mine.

Sadly, a few weeks ago, Patrick succumbed to his battle with cancer. After that afternoon, we struck up a friendship, and he would text me after reading my posts to talk. As I listened to happenings in his life and he shared updates on his battle with cancer, I was often reminded of his advice. "Do not feel guilty for sharing your journey with cancer. You are helping so many others in ways you do not even know”.

Patrick's advice has stayed with me since we met, and it is advice that I hope helps others who are debating or struggling to share their own cancer journeys. Your story, just like mine, is unique to you. You get to share and write about what you want regarding cancer, you did not get to decide that cancer became a part of your story. Do not feel guilty or afraid, every story that is written has its place.

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