http://www.curetoday.com/community/kim-johnson/2018/02/the-importance-of-sharing-our-caregiver-stories
The Importance of Sharing Our Caregiver Stories

Kim Johnson

Cancer is something that permeates many parts of society, but those who suffer from cancer still face being stigmatized. And those of us who don't have cancer but are still affected by the disease often feel alone. We silently struggle with watching somebody we love go through cancer, unable to change the situation set before us.

When my sister was diagnosed, we, as a family, faced the reality head-on. All of sudden, nothing else mattered, and treatment started faster than we had a chance to grasp the full scope of the situation. She had been sick for a while, but nobody expected to hear the word “cancer.” There simply aren't adequate words to describe how that moment actually feels.

What followed her diagnosis was a seemingly endless maze of chaos, confusion and many unknowns. Just as my sister had her own battle, as her caregiver, so did I. Like a Venn diagram, we met in the middle, but each traveled a path that was uniquely our own. I spent copious amounts of time just trying to search for the instructions on how to survive cancer. After all, everything was on the Internet, so of course this had to be there too. Sad to say, I never found it.

What I did find was knowledge that helped to carry me through – a wealth of information that was both helpful and unhelpful. And nearly a year later, when she had hit another roadblock in her treatment, I found something else. I found a remarkable young man who changed my perception of caregiving. Several months after our online meeting in a chat room hosted for caregivers by the Leukemia and Lymphoma Society, we agreed to meet for coffee.

Through talking to him, I realized that although what I was doing for my sister maybe wasn't the norm, it was my normal and that was OK. Because as stated above, there is no road map for how to navigate cancer. And for those of us who are caregivers, I think it is most important that we have compassion with ourselves as we try to figure it all out. We sat face-to-face for the first time that afternoon and shared our respective stories. It was truly the first time that I hadn't felt entirely alone as a caregiver.

From night one in her hospital room, I had put pen to paper in an effort to simply get the thoughts out of my own head. In the time that followed, I never stopped. But it had never crossed my mind that my story could help others going through cancer, either as a patient or a caregiver.

It was after meeting him that day that I chose to begin volunteering with Rocky Mountain Chapter of LLS and sharing with CURE my words that have hopefully helped others. I know for certain that having those unique creative outlets helped me to process both during and after cancer. Sitting with him, I came to better understand that no matter how different each individual experience with cancer may be, in the end, you can find commonality in most everything in life. Even when it comes to cancer.
 

 
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