My Cancer Passion: Writing It Down

When my daughter was diagnosed with breast cancer at 27, I moved across the country to support her through three surgeries, twenty weeks of chemotherapy, and six weeks of radiation. There was so much to manage both practically and emotionally, and while she never saw it… except maybe once… the helplessness and despair I felt was overwhelming most of the time. I had limited options to work through it all, and to my surprise, because I had never done anything like it before, being intimately involved in my daughter’s cancer experience triggered a passion and a need to write it all down.

When I went looking for information directed at people like me when my daughter was diagnosed, there was almost nothing out there. I found lots of blogs and support groups for spouses, and young children, and the parents of young children whose loved ones had been visited by cancer, but no one sharing what life was like as the mother of a twenty-something. The few things I did find really didn’t resonate with me. They didn’t reflect the reality we were living, and I couldn’t reconcile what I saw as the false positivity in the few things I was able to hunt down. In my world, there was nothing good about standing by my child’s side as she was poked and prodded, and drugs so toxic they can burn the skin were injected into her veins. Nothing warm and fuzzy about massaging her feet and hands to try to push back the numbness and pain of neuropathy. No epiphanies about life that couldn’t have been learned without her body being cut into multiple times.

I started to write about my truth, and my daughter’s truth, and I was amazed at the reaction. While I have had some mothers reach out to me to ask me questions or thank me for giving them something to find when they went looking when their twenty- or thirty-something children were diagnosed with cancer, my larger audience has turned out to not be the mothers of young women diagnosed with breast cancer at all. My biggest audience is the young women themselves.

When I write about how the diagnosis, treatment and living in the aftermath of cancer survivorship impacts my daughter’s life and mine, I do not pull any punches. Life for my child will never be “normal” again. The trust she had in her young body to carry her through was wiped out when she heard the words “It’s cancer.” We are six years out from when she sat in a doctor’s chair and found out the lump was definitely not nothing, and it still informs her life completely.

People look at her now and say, “You’re good… right?” She isn’t. She’s okay and has good days, but she will never be able to go back to who she was before because that person got left on the cutting room floor. She has long-term side effects from treatment that she has to manage every day. She takes medication that keeps her in chemically induced menopause to prevent recurrence, and more medication to help her deal with the impact of that, and yet more medication to help her deal with the impact of the second one. She still has appointments with oncologists, dermatologists, and cardiologists, all to do with her cancer treatment. She sees a counsellor regularly to help her deal with the emotional fallout that can drop her to her knees in a heartbeat. Because it still can, when she least expects it.

It can do it to me, too.

There is laughter, there is love, there is light. I am not saying that our lives are misery 24/7 because that would be a lie. But mixed in with the moments of joy is the grief of a young woman’s future interrupted and the understanding that she will be living a life adjusted until it (hopefully a long time from now) ends.

When I write about our story, other young women will tell me they feel seen for the first time in a long time. They will share what I write with their loved ones because the words they can’t seem to find to explain what’s going on for them are there on the screen. They will tell me they thought there was something wrong with them because they couldn’t meet expectations to be “all good now,” and having someone say that it’s the expectation that needs to change, not them, makes them weep.

I am eternally grateful to my child for giving me permission to share her story from her perspective and mine, and that Cure has given me a voice. It helps me manage my helplessness in the face of this dread disease to know that our experience speaks to others and eases some of their minds. It helps my girl to know that when others read about her, it gives them the space to normalize their own existence, even though there is nothing normal about it.

And never will be. Because cancer sucks.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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