A caregiver discusses the challenges of always waiting to hear "the cancer is back."
I love receiving video chat requests from my children. All of them moved away from home at a young age to attend college, so it’s been a joy that technology has advanced to the point that I can see them as we chat. As a mother, being able to see their faces as we talk gives me a touch of feeling that is almost like actually being there. We all do it fairly often, but most often it’s calls between me and Adrienne.
Sometimes when I answer it’s a smiling, joyful face. Those are the conversations that brighten up my day or lately even my week. I hear stories of lovely 29-year-old woman things like dating, the new recipe that’s the bomb, or amazing clothing find at a secondhand store. Sometimes it’s a frustrated face because something is going on in her life that is driving her nuts and she’s looking for advice on how to manage her end of things and she trusts that I will ask just the right questions so she can find the answers she’s looking for. Sometimes, it’s a face crumpled by tears because something in her life has just jumped out at her to say “Hey, remember you had cancer?”
The most recent example happened last month. The weather was supposed to be cool and my daughter thought to herself “I’ll pull out my chemo socks to keep my feet warm." She hasn’t worn the socks since treatment ended, but they were put back in her drawer when she unpacked her chemo bag for the last time.
They are cheerful yellow reading socks that her sister bought her that came with my daughter every single time she was hooked up to an IV on a chemotherapy ward. She pulled them out of the drawer, looked at them, and collapsed on the floor in tears as the memory of how she felt both physically and emotionally undergoing the life-saving treatment washed over her. She couldn’t catch her breath, and when she called, I sat there reassuring her that I was there whenever she was ready while she slowly pulled back enough that she could tell me between sobs what was going on. As we talked through it a plan was put in place for the socks to end up in a firepit in a symbolic show of force to the universe that she will not be defeated.
Since the phone call that changed my life in March of 2019 when I heard my daughter say “Mom, it’s cancer” I still light up when I see it’s her on the other end of a request, and there are times now, for which I am unbelievably grateful when cancer is not front and center in both of our lives. But there has been one big change in how I respond when I see her name on the screen. There is now a self-preservation mechanism that I have consciously put in place because I have to be prepared for anything because if it’s a tearful face in those moments when she is so upset that she can’t speak I have to steel myself to hear “Mom, it’s back."
The steps I take are very similar to the actions that people take when they are having a panic attack, and it helps me immensely to calm my being so that I am ready. The first thing I do is check my surroundings to see that I am in a safe place. If I’m driving or out shopping somewhere, I need to break away from those activities by pulling over or leaving the store. If that is the case, I will message her that I need a few minutes and I’ll call her back. If I am in a safe place, I close my eyes and take a few deep breaths to center myself and to make sure that I am actually breathing, because I noticed in the beginning that I would hold my breath. And once I answer the call, I allow myself the time, in my head, to push back the fear. If that means taking a quick bathroom break and coming back to the conversation so that I can truly enjoy hearing about her latest funny story I do exactly that.
Recovery for a caregiver can be a very long road, and when it’s your child that road is a very bumpy one. Thankfully I can hold Adrienne’s hand as I keep on walking down the path. She is a part of my heart walking around outside of my body, and the helplessness of watching her go through what she did has left me a little bruised and battered. Perhaps a day will come that fear will not be one of the first emotions I feel when she calls, but for now, the experience is much too close for me to let it go. That’s another one of those things I just let be OK.