Write, talk, laugh, repeat: One caregiver’s guide to coping

It isn’t supposed to be the way of things, that you’re the one sitting in a chair beside your child as chemotherapy drugs flow into her veins. Or sitting in a surgical waiting room setting a timer on your phone so that you can stop yourself from looking up every few seconds to see if your daughter has been moved to the recovery room. Or sitting in a radiation clinic seeing everyone’s shock when a name is called and it’s your girl, not you, who gets up and walks back into the treatment area.

It has never been my way to put my needs ahead of my child’s. During her cancer experience one of the most difficult things for me to do was push past the guilt of that to do what was necessary in order to be there for her for one more hour, one more day, one more week.

Everyone’s experience is different. And, there is no rulebook that offers the right way to manage the deep emotions that come from watching your child go through the physical and emotional devastation that followed my daughter’s breast cancer diagnosis. On the physical side, there were three surgeries, an egg retrieval procedure, 20 weeks of chemotherapy (and with it some side effects that still make me weep at the memory), and 6 weeks of daily radiation. On the emotional side, the sense of betrayal and total loss of control over a life that was just beginning to blossom on top of managing the shock of the physical trauma that impacted her then and continues to inform her life to this day. I have never in my life experienced the degree of soul-sucking helplessness I did while I held her hand both literally and figuratively every step of the way. While I needed to be there like I need air, the emotions I felt were all so big that I did not have a chance to process them at the time and I tucked most of them away so I could be who we both needed me to be. My life now consists of learning ways to let it go.

What I’d like to share with you, though, are a few things that worked for me when I was in the thick of it.

Write it down

My despair was so huge, my fear so all-encompassing, that I knew if I actually spoke the words aloud to anyone the protective wall I had built to enable me to get through the day-to-day would come crumbling down, and I wasn’t sure I’d be able to rebuild it. I knew I needed to get it out somehow, needed other people in my life to know what was happening, and so I started to write it down and share it with them. In the dark, when my girl was tucked into her bed and I was alone in the living room I slept in for almost a year, I would open my laptop and the words would flow like a river; sometimes tumbling in terrifying rapids, sometimes slowly twisting and turning with the terrain, and sometimes, believe it or not, easing along like a bubbling, playful current. And in writing it down, all of it somehow became more manageable. I have no idea why, but it did.

Find your person

There were times when it got so big that I needed more than just writing it down.  At the very beginning I knew that I would need to have that one place that I could be completely honest about what was going on with me. There were so many people I felt I needed to protect from the reality that my list of potential candidates was very short, and in that short list I also knew I needed it to be someone who wouldn’t try to fix me. I asked a special someone in my life if she could be that for me, fully acknowledging that I knew it was a lot to ask and that it wouldn’t change my feelings for her if she needed to say ‘no’. Thankfully, she said ‘yes’. The truth is, I couldn’t talk to her either. But at three in the morning when I couldn’t sleep, I could text her and she would just … listen. Having that in my back pocket meant more to me than she will ever know.

Bask in the light of laughter

Thanks to streaming services, my daughter and I discovered opportunities to laugh at a time when I didn’t think it would be possible. We watched TV series, stand-up comedy specials, movies  anything that looked like it might strike our funny bones. Sometimes we laughed so hard that we had to hit pause and go back and watch something again only to find ourselves once more dissolved in helpless giggles. Cancer treatment is like one hit in the face after another with a frying pan, and when reality was a very dark place it was lovely to have times when, just for a second, we could escape the gloom and bask in the light of laughter.

Understand, it’s not about you

No matter how much I wanted to be able to make it go away, to relieve the pain and rescue my child from the emotional whirlwind that went with her breast cancer diagnosis, I couldn’t. Nor could I say I understood because I have never had cancer, let alone at a time when my world of possibilities was beginning to open up. Sometimes my daughter would be so angry and occasionally it would feel as if I had a target on my back, and my front, and my sides. She needed somewhere to put the anger and since I was right in front of her much of the time it ended up on me. At those times I would take a deep breath and, inside my head, repeat the following mantra: “This is not about you.”  She just needed that safe place, like I had, to let it all out. If I couldn’t make it go away, at least I could be that place. It helped me immensely to know that I could.

Prepare everyone for re-entry

Supporting someone though cancer treatment is like living in an alien world. Your life is controlled by appointments and treatments and waiting for test results. You learn to be hypervigilant about the smallest signs of infection and adopt habits that ensure you’re not bringing danger into the environment. You learn to change bandages, measure the fluid in drains, and help with exercises to maintain movement. And then, active treatment ends. Everyone around you thinks it’s over, but then you go into orbit around Planet Cancer because cancer doesn’t have an end date. In the never-ending story of post-cancer life there are still test results to wait for. There is still fear that every itch, every ache, every foggy day means that it is back. There are still triggers that will drop you to your knees because now you have the space to feel all the feelings you couldn’t, or wouldn’t, allow yourself to feel when cancer was in your face.

Cancer changes people, and it also changes the people who support them. It’s very important that your loved ones are made aware that you are not the same, that you are going to need time to work your way back to calm. The hypervigilance can show up in unexpected places, like being afraid in traffic. When someone complains about a small thing, you can flash to anger in a heartbeat wanting to tell them you wish that was all your child had to deal with. Your body has been on the edge of a precipice for a long, long time, and it will take a while to ease your way back. If your loved ones are prepared, they will also be able to repeat the mantra “This is not about you,” and offer compassion and love instead of anger and hurt in those times when your behavior confuses them as you recover.

Because that’s what you’re doing. You’re recovering.

My last piece of advice is to honor your recovery; to give yourself time to figure out how you are going to navigate through the memories and learn to let go. For some people that will mean meditation. For others that will mean faith. For a few it will mean throwing dishes at a brick wall. For me, it means continuing to do what I have done from the beginning: I write it down.