Peeling the Onion: Unpacking the Complicated Emotions Experienced as a Cancer Caregiver

Do you ever have days when your emotions tell you something is going on, but you can’t quite pinpoint why you are feeling out of sorts? Days when you are less tolerant, constantly on the edge of tears, or feeling very tired even though you slept well?

I have always called those my onion peeling days, because sometimes the real cause has nothing to do with what may have set me off, like finding that the toilet paper has been hung backwards or the last muffin I was saving just for me was snagged by someone else in the house.

Now that we are living in the survivorship phase of my daughter’s cancer experience, there are a multitude of reasons that can tip me over that I was not aware would be part of my life when I began holding her hand through what I can only describe as an ordeal. These days when I begin looking beneath the layers, this is what I often find:

Scanxiety

“Scanxiety” is the emotional state that cancer survivors and their caregivers live in as the scan or other tests approach and then in the time between scan and results. Because people with cancer can no longer live in the bubble of “it can’t happen to me,” and their loved ones have been told the devastating news before, both sides of the equation know that it’s a 50-50 game at best. The beast is either still dead, or it’s not.

Cancerversaries

Cancerversaries are the annual recognition of important dates related to the cancer diagnosis and treatment. These dates can include the first time a survivor and caregiver heard the words “it’s cancer;” first and last days of chemotherapy, radiation or surgeries; or hearing whether or not the treatment was successful to name a few.

Cancer Awareness Month

For me, this is October, which has been designated as Breast Cancer Awareness month. Every corner I turn, there is a pink item that reminds me of my daughter’s breast cancer experience or some statistic that lets me know what the chances are that she will be alive five or 10 years from now. I can do my best to avoid it, but it’s simply everywhere.

Social Media Posts

A big part of being an author at this point in history is having a social media presence. I joined both Twitter and Instagram in 2020, and because of this I have become involved with many individuals and groups associated with the cancer experience. There are many upsides to that, including the unique shared sense of humor, but a downside is seeing expressions of sorrow when a member of the cancer community is lost, particularly because so many of them are my daughter’s peers. At those times I realize that regardless of scientific advances, my child is here because of the luck of the draw. That’s a hard reality to face, because luck can change.

Anticipatory grief

When I was living in the “before cancer” universe, like many parents, I viewed my daughter’s options as limitless. In the “after cancer” existence, I can hear wonderful news about another young woman and while I rejoice for them and their families, I can sometimes experience deep sorrow realizing that cancer may have taken that from my daughter and me. It’s not all the time, but when it strikes my world becomes a very small place.

Helplessness

Even though the above reasons are enough justification for my distress, I sometimes need to peel even those layers off and when I get to the core, I usually find the same thing: helplessness. Out of all the emotions I have experienced in the last three years, this one is the worst. I couldn’t protect her then and I can’t protect her now. That’s a difficult thing for a mother like me to acknowledge.

So when I get there, sometimes after a few tears, I take a deep breath and repeat my mantra. She doesn’t have cancer today, so that makes it a good one. And then I apologize about the muffin reaction.The toilet paper though ….

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