My Daughter’s Cancer Treatment Is Over, So Why Do I Keep Thinking About the Disease?

Watching my daughter’s life be interrupted by breast cancer made me want to help other parents who might find themselves in a similar situation.

It’s been more than three years since my daughter was diagnosed with breast cancer, and I had to try to make sense of how this could have happened to my child. Three years since I was stripped away from my position of blissful ignorance about the cancer experience.

My daughter is currently NED (no evidence of disease) because she was one of the lucky ones and her cancer was fully responsive to the chemo treatment plan, so we get to live in a bubble of being able to contemplate her having a future.

Yet, I have been asking myself recently why I keep writing about it, creating posts about it on social media, being a guest on podcasts telling our story. Why so many of my thoughts are about advocacy for this small group of women who are diagnosed with breast cancer when they are much too young.

And the answer is that when I picked up the phone and heard the words “Mom…it’s cancer.” I looked for the words of people like me out there in the world that might help guide me and I found so few. My child was an outlier, and that made me one, too, and I felt so alone. I do what I do because I need other mothers like me to find something that speaks to them when they go looking because being the mother of an adult child with cancer is a very complicated business.

If you have a child who is in their teens or younger, you still have a great deal of involvement in treatment decisions and a lot of control over how things go. Since the helplessness of having a child diagnosed with cancer is so overwhelming, the ability to do something, to make decisions, to be able to guide the trajectory of the path is a way to help manage the emotional whirlpool that tries to suck you in every day.

When your child is an adult, you don’t get to make those decisions and have little or no control. But because your baby is always your baby, and you hate to see them hurting, the struggle to stay in your lane is very hard.

I would have to check my intent each time before I spoke to see if it had the least hint of me judging her choices.She did some things that I did not think were wise, but I understood that her emotional state was sometimes the driving force and I learned to keep my opinion to myself.And I kept reminding myself that it wasn’t my arm hooked up to the IV.It wasn’t my eyebrows and eyelashes coming off on the washcloth. It wasn’t me who had to summon up the courage to walk onto the oncology ward every week knowing how lousy I would feel afterwards. I just had to watch that part of my heart go through all of it, trying to find a way to make it easier while at the same time trying to manage my own pain.

If your child has been living independently, cancer will most of the time take that independence away, because too much help is needed during treatment to do it on your own if you have the choice. When children have worked hard and long to be able to stand on their own two feet, it can be a crushing blow to be forced to give that up.

Cancer takes so much from them, and this is one that often doesn’t get spoken about. When a young woman like my daughter has her life so rudely interrupted just when she was reaching her stride, when she is put in the position of being the dependent child again just when she looked in the mirror and saw a badass-life-challenger looking back at her, it is one more thing to be very, very angry about.

When you are doing all you can to provide support, it can be difficult to acknowledge that your presence represents something your children can no longer do: take care of themselves. But on bad days, that’s what you can become — a living breathing example of what cancer has taken away.

It's hard to remember when your child lashes out that it isn’t about you. None of this is about you.It can feel that way when you’re struggling to breathe watching your child in such misery but when your child is an adult, their cancer diagnosis puts you in the passenger seat.Your control consists of taking a deep breath, fastening your seatbelt, and hanging on for dear life.And it’s a very bumpy ride.

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