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 recognize that it’s pretty cool to see something I’ve made in the first few search results, bigger part of that image to me is that if my essay is that high on the list, that tells me there’s just not a lot of resources are for people like me – mothers of young women with cancer.

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

I was recently approached by a mother whose 20-year-old son had been diagnosed with cancer and she had the same challenges of finding material related to her situation. She also found my article on Google and based on my essay, she contacted me asking if I had any tips to help her be who her son needed while he was going through treatment.

I read the same helplessness in her words, the same disbelief, the same shock I felt 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 ​​what she would feel like watching her son undergo cancer treatment, how she wished she could somehow wave a magic wand and do it all for them would make both disappear.

A few months ago I got a message from a young woman who told me that the book I wrote about my experience had helped her mother immensely to understand not only her own raw emotions, but some hard truths about cancer treatment. and the hilarious moments that aren’t really part of the public perception. I replied back that the reason I wrote about my time supporting my daughter in cancer treatment was that I wanted one mother, just one, to seek out a resource specific to her situation and find one. Mission accomplished, I think.

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

Let me tell you, it is not. It’s more like Godzilla swung his tail and slammed you into an abyss and you dangle there, digging your nails into the cliff, holding on for life, trying really hard not to look down on what might be below.

I wish I could have found a community in the cancer world that made sense to me, but I didn’t. Even now, the people I associate 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’ve been told that I really understand what it’s like for young adults to get cancer and that my daughter is lucky enough to have me in her corner. I am grateful for those words. What’s missing from this equation for me is that I don’t seem to have anyone who understands what it’s 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.

Instead, I watched a young woman I gave love, roots, and wings to joyfully spread her wings to fly, only to have them cruelly cut as she flew into her future.

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

Cancer sucks.

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