Caregivers Can Experience Survivor’s Guilt, Too

Survivor’s guilt is not just felt by individuals who overcome a deadly disease like cancer, writes a cancer caregiver. She explains how she has experienced it too but knows that not all caregivers are as lucky as her.

When my daughter was diagnosed with breast cancer, I did as much research as I could to find out about types of cancer, stages and the often-scary look at survival rates. My daughter was very lucky because although her cancer was extremely aggressive, she pushed to have the lump looked at even though everyone said she was “too young.”

The cancer was caught early and had barely spread to her lymph nodes when the process to kill it began.And she was also very lucky that the powerhouse chemotherapy regimen they chose was exactly what was needed to kill the body-snatching invader trying to take her over. After 20 weeks of chemo, three surgeries, six weeks of five-day-a-week radiation she is … as of now … in remission. Although you can never really “unhave” cancer, with the exception of targeted hormonal therapy to help prevent recurrence, she is for the moment walking through life with her cancer diagnosis and treatment behind her.

Along the path I walked as a caregiver, I began to engage with individuals and organizations who were having similar experiences to me and my child. I would read articles and tweets and see my daughter or I in them and respond based on our experience. As I followed more of these women and they followed me back, more and more of my feed became filled with their comments about what their lives are like and for the most part, they are living with metastatic breast cancer.

Recently, one of them spoke about how much her mother was struggling with what was going on with her and I wanted to offer words of support because I know what it feels like to have a daughter with cancer, but my hands hovered over the keyboard and I couldn’t bring them to hit the keys.

While I know what it’s like to have a child experience breast cancer, my daughter’s cancer responded to treatment. I may one day know what it’s like to wait for scan results and have it come back with bad news, but for today I get to live in a world where my child’s last scans were good ones. I get to look at her in this moment and not look at a calendar to see how much longer she has, to not wonder if she’ll make it to another Christmas.

I can recall us having a discussion early on when she was trying to make a decision about something and I tearfully said to her, “All I need you to do is live. I don’t care how you get there.” She did, and the fact that she is still here fills me with such gratitude.

But when I read those posts from young women or their families who were not so lucky, I am filled with monumental guilt because she survived when others won’t. That I get to keep my baby and others will have to say goodbye.

I am also filled with guilt because I am glad it isn’t me who has to contemplate losing my heart. I don’t think I could look someone in the eye whose child’s treatment did not work and not have them see that while I am so profoundly sad for them, that I am also profoundly grateful that my child’s treatment did.

I’d like to say I wouldn’t wish what she went through on my worst enemy, but I’d be lying, and realizing that about myself makes me feel like a bug under someone’s shoe. Cancer is simply AWFUL, and when you watch someone who has worked hard, given up much, done all the right things be slammed into the ground by cancer and its treatment, there’s a lot about your value system that can be rocked.

I even feel guilty when I hit a cancer memory trigger and it stops me in my tracks. The trauma is so real, but I still have her, so it feels like I have stopped having the right to feel how I do. I’m not a pessimist by nature, but hearing the news the first time almost ended me because I was so unprepared and I can’t allow that to happen again, so while others in our lives can fully embrace where we are now, I feel guilty when I can’t fully share their joy because I have to be ready for that bad news scan to put her back on the cancer express.

One thing for sure is that the roller coaster I climbed on two years ago is still in motion, it has just moved onto a different track. Not sure I like this one very much, either. I know the ride will stop eventually and I hope it does long enough for me to reconcile all the stuff I’ve been carrying along the way. In my daughter’s words, it’s just a lot.

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