The Elephant in the Room is Cancer. Tea is the Relief Conversation Provides.

Scars and Souvenirs

by Brittany JohnstonSurvivor, Breast CancerApril 11, 2024View more posts from Brittany Johnston

“Your MRI result came back and it looks beautiful. We won’t know for sure until after surgery, but it appears you had a complete response to the chemotherapy.” As I heard my oncologist say these words, I could feel my heart start to beat a little faster, almost as if perking up at the idea of truly living again. Sure, I still had a lumpectomy, 20 rounds of radiation, and the rest of my immunotherapy to endure. But the cancer was gone and the worst part was over. I could breathe a sigh of relief as my life was finally mine again. Right?

I had my surgery in November of 2022 and it went well. Although, I did end up with lymphedema in my left arm, despite only having had one lymph node removed. When I have a flare-up, it has to be addressed right away, and over time it has grown a little burdensome. I also have to do daily exercises that are quite time-consuming in order to stay on top of it. So maybe my days weren’t going to be as free and flexible as I had assumed but dedicating a couple hours a day to preventing a flare-up was nothing compared to the constant anxiety I felt when I knew that cancer was still in my body. I had found a new appreciation for life that made the little inconveniences seem almost nonexistent. Until it didn’t.

As time went on after treatment, I started to realize that some of the side effects weren’t going to go away as quickly as I had hoped and that some may even be permanent. I was made aware of this going into treatment, but while I was riding the high of being NED after months of being keenly aware of every little change in my body and feeling like I was approaching each day white-knuckled and ready to fight, it was easy to forget that there were going to be lasting effects from treatment. The immediate physical dangers were less present. (During chemotherapy and immunotherapy, I was hospitalized three times.) But as time went on and I was further out from active treatment, I started to notice some of the lingering side effects a little more: achy joints and bone pain, hot flashes from the medically-induced menopause that appears to be permanent, fatigue, even the cognitive impairment that is chemo brain hasn’t fully lifted.

And though the lingering effects of treatment have started to weigh on me, it is the long-term emotional side effects that have truly thrown me. Before my breast cancer diagnosis, I was struggling severely with my mental health. Depression left me bedridden and on the sporadic occasions I was able to gather up the energy to get out of bed, my anxiety would taunt me until I ended up right back where I was. It was difficult watching my friends start their careers and families while I felt productive if I took a shower. As desperately as I wanted to, I couldn’t find a way out of the relentless waves of sadness that kept rolling over me. Because of this, I knew treatment would be an uphill battle if I couldn’t get out of that mindset, and I believe I was able to because I wanted to survive.

But now that I am out of survival mode, I am noticing the realizations of what I went through are manifesting as hypervigilance, anxiety, and depression. I feel like I’m supposed to only feel grateful because I am NED, and don’t get me wrong, I am extremely grateful. But I am also angry, resentful, and sad. I am celebrating the fact that I am NED, but I am also processing the traumas my body has been through, grieving the loss of carrying a child, and learning how to live in a body that has aged beyond its years.

Survivorship is not putting cancer behind you. I will never be able to put cancer behind me. I have permanent physical and emotional scars that I will carry with me throughout my life. I believe survivorship is learning how to create a life you love, even though it may not look how you always envisioned.

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