Not Finding a Community as a Caregiver

When I Google “Adult Children with Cancer,” the fourth result on the list is an article I wrote for CURE® in September 2020.While I acknowledge that it is kind of cool to see something I created in the first few search results, the bigger part of that picture for me is that if my essay is that high up on the list, that tells me that there simply aren’t a lot of resources out there for people like me – mothers of young women with cancer.

Just like there weren’t a lot of resources for me two years ago when my 27-year-old daughter told me the news of her diagnosis.

I was recently contacted by a mother whose 20-something son had been diagnosed with cancer and she was having the same challenges finding material related to her situation.She found my article on Google, too, and based on my essay, she reached out to ask me if I had any tips to help her be who her son needed her to be as he went through treatment.

I read the same helplessness in her words, the same disbelief, the same shock I felt when I was trying to process what had just happened in my child’s life and mine.My heart went out to her because I had a pretty good idea of how she was going to feel watching her son experience cancer treatment, how she would wish she could somehow wave a magic wand and make it all go away for both of them.

A few months ago, I got a message from a young woman telling me that the book I wrote talking about my experience had been of great help to her mother in understanding not only her own raw emotions but also some hard truths about cancer treatment and the moments of hilarity that aren’t really part of the public perception. I answered back that the reason I wrote about my time supporting my daughter through cancer treatment was that I wanted one mother, just one, to look for a resource out there that was specific to her situation and find one. Mission accomplished, I guess.

I don’t know why we are so invisible. Perhaps it’s because there is the expectation that we will pull ourselves up by our bootstraps and move on despite the despair. Or maybe it’s because we are so used to mothers holding barf buckets and wiping brows without flinching that we just assume that watching a child go through cancer treatment is just one step along the same path.

Let me tell you, it’s not. It’s more like Godzilla swung his tail and knocked you clear into an abyss and you’re dangling there, your nails digging into the cliff, holding on for dear life, trying very hard not to look down at what might be below.

I wish I could have found a community in the cancer world that made sense for me, but I didn’t. Even now the people I interact with as I continue to write about my experience are not like me. Most of them have had cancer or lost someone to this terrible disease and so while I am welcome on the periphery, I am still an outsider.

I have been told that I really understand what it’s like for young adults to go through cancer and that my daughter is lucky to have me in her corner. I am grateful for those words. What is missing in this equation for me is that I don’t seem to have anyone who understands what it is like to be a mother of a 27-year-old woman with cancer. Not a young child. Not a teenager. Those experiences have their own pain that I would never presume to understand.

Rather, I watched a young woman that I gave love, roots and wings to joyously spread her wings to fly only to have them cruelly clipped as she was soaring into her future.

I don’t think I have ever been so lonely in my entire life. And as I sit here the survivor’s guilt has climbed onto my shoulder and whispered in my ear “Well at least she’s still here.”

Cancer sucks.

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