Living in the After: A Mom's View of Breast Cancer Survivorship

My experience with cancer is that there is a Before and an After. The line between the two is the moment you sit in the doctor’s office or pick up the phone and hear the words that will close book one of your life and open the first page of the sequel.

In The Before, I knew cancer existed. I would watch television shows and see depictions of cancer patients sitting in a chemo chair with their heads wrapped in colorful scarves or covered in a beanie. Most of them would die in the end. That’s just how the stories would go. For the ones who lived, the story would end as they sat in the doctor’s office hearing that they were now cancer free, and they and their loved ones would hug and maybe weep with joy.

What TV Doesn’t Show About Life After Cancer

But no one followed them home once they left the doctor’s office. No story depicted what it was like for them living in The After. And living in The After is very hard.

You don’t really ever walk away from cancer the way the stories show. Cancer too often recurs, and for patients like my girl who walk away with no evidence of disease status, it means exactly that: not that the cancer isn’t still hiding somewhere, just that the latest scans they have run don’t see any evidence that it’s there. Because there is no guarantee, they need to repeat scans on a regular basis to check.

Living Between Breast Cancer Surveillance Scans

My daughter is seven years out from finishing chemotherapy, and she still goes back for regular MRIs to check for recurrence. While the period in between those scans has gotten longer the further away she gets, she still lives her life in the increments between them. Like Schrödinger’s cat, it’s always possible that she does or doesn’t have a cancer recurrence, but no one knows until they take the lid off the box and look at the scan results.

There is a huge emotional toll to living your life in increments. I can see it come over her as the date for the scan comes closer. She gets a little more guarded, a little more incapable of not being in control of all the nuances of her existence. Things like how the dishwasher is loaded, how long it takes for co-workers to respond to requests and how the butter is cut gain a greater significance, and the anxiety when it’s not done just so invades her being. The day before the scan she closes in completely, going through the motions of her personal and professional roles, seemingly outwardly cheerful if the situation calls for it, but she is not really there. The day of the scan the brittleness is there, and it typically ends with takeout food and a couple of glasses of wine to hush the noise.

Then comes the waiting, which is almost the cruelest part.

There is a lot of waiting in The After.

Feeling Scan Anxiety as a Caregiver From a Distance

We don’t live together. Other than when I moved into her apartment for a year to support her when she was going through treatment, she has been on her own or living with her spouse since she left home to go to university at 18. But we are very connected, and I will be going through my day and feel anxiety wash over me when there is no immediate reason for it, and I will look at the calendar and go, “Ahh … of course.” Often during the week before the appointment her spouse will message me and say, “I think she needs to talk to her Mom,” and I will stop whatever I am doing and call her, and typically as soon as she sees my face the tears start.

They are often tears of anger. Anger at how this disease still has so much control over her emotions, over her life. Anger at how she is still so unprepared for how this feels … she should be prepared … she’s been through it enough times she should be prepared … right? Anger that the fear can overwhelm all the joy in her life that the last seven years have brought, that it can darken her days so that it becomes difficult to deeply feel the warmth flood into your spirit that little 3-year-old arms around your neck should bring.

How I Help My Daughter Through the Fear

In those moments I do what I have always done. I go into a calm place in my head and we talk through it. I validate her emotions and we explore options to bring them down a notch. I remind her that she has been here before and successfully used all the tools in her toolkit to let her take a breath. Usually, when we get to the end of the call things have settled a bit and she can re-engage with her family, hug her little girl and feel it deep inside.

When we hang up, the calm place I have been in gives way and I scream at the universe: ENOUGH. She has been through enough already. I rage at the unfairness of it all, that her life is still so informed by this awful disease invading her body, that my body can still vibrate with so much anger after all this time. Then I shake my head because I have shared these calls enough times that I should be prepared for how this feels … right?

And then I go rearrange the dishwasher.

Living in The After is hard.

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