I always try to find an analogy to help people understand what it’s like to experience a loved one having cancer. It’s one of those things that would have been impossible for me to understand until I heard the words, “Mom, it’s cancer” and spent a year going through the experience with my daughter.
That experience showed me that a cancer diagnosis places the person with cancer at the center of a bullseye. Caregivers will find themselves placed on one of rings outside of the bullseye depending on the needs of the patient, the intimacy of the relationship, and availability to provide support.
When I was a caregiver to my adult daughter as she went through cancer treatment, I even found that based on her needs I would be very close to the bullseye some weeks and then find myself pushed outward as side effects allowed her to live more of her life independently. I didn’t walk on eggshells, but I did constantly watch for signs that what would be sees as an act of caring one day would be perceived as me being intrusive the next day.
That degree of hypervigilance is exhausting. As the year progressed, I found myself at the center of my own bullseye. Because my family and friends were not there, they had no frame of reference to understand what I was going through. When they reached out in a caring gesture offering words of concern, their comments would make me feel more isolated and I slowly but surely found myself standing alone.
Once I was able to go back home and resume my own life, it became very clear to me that it was going to be a challenge to help others understand what I would need as I worked myself outward from the bullseye in my recovery from the experience. Because what happened to her also happened to me.
While I was with my daughter, both of our lives were full of trauma. Hers was related to having cancer and what that meant for her. Mine was standing by helplessly as her body was poked and prodded and poisons were pumped into her and once we got home doing all I could to help her manage some very challenging side effects. When I was in the moments of trauma, the emotional reactions had to be pushed away so that I could deal with the practical aspects of taking care of my daughter.
Active treatment is long over, yet I find myself frozen when I see someone with a pink ribbon keychain or see a television program where a woman was injecting herself during fertility treatment. I feel tears streaming down my cheeks as I hold a pudding in my hand.I find myself trying to explain why there are certain foods I can’t eat anymore because my mind associates them with chemotherapy. And I see my family and friends look at me as if I am crazy.
It’s over, isn’t it?Why are you still feeling this way?
I still feel this way because it’s the first time I’ve had the space to feel those feelings. I am just as surprised as they are when I burst into ugly sobs when something pulls me back into the experience. I spent a year doing all I could to not react because both my daughter and I were so afraid that we were standing on the edge of terror all … the … time.
My daughter told me before I left to go back home that I would have to be selfish for a little while to give myself time to process things. I’m not one to put myself first. But she was right.
The trauma of being a caregiver to someone I would give my life for left me with a gaping wound in my soul that needs time to heal. I’m crossing my fingers that the people who love me can have the patience to let me do what I need to so that I can step out of the bullseye. So far, so good.
For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.