What I Wish I'd Done Differently After Being Diagnosed With Triple-Negative Breast Cancer

When I was diagnosed with triple-negative breast cancer in 2018, I didn’t want anything to do with it. I didn’t want to tell people, I didn't want to give it any air, I didn’t want it to change my life.

I had a plan of attack: I would have a double mastectomy followed by five months of chemotherapy. It was all very simple. Straightforward. Breast cancer, in my mind, would be gone in a few months and therefore didn’t deserve real estate in my brain.

I am often the one to prepare, plan, and process. But I didn’t do that in this case. Looking back, I didn’t really understand what I was about to embark on, because I obviously didn’t want to. As a result, I refused to look at what might help after surgery, what recovery would be like, or even if there were different surgical reconstruction options I could have considered. I kept my eyes closed to cancer.

That was a mistake.

In the vein of “I don’t know who needs to hear this,” here’s my short list of I-wish-I-hads, if you’re facing breast cancer treatment like I did.

1. I Wish I Had Taken Time to Understand What Mastectomy and Recovery Would Be Like

I went into my double-mastectomy with no idea what it was, what it would feel like post-surgery, or how long it would take to recover. Doctors said full recovery was six weeks, but I had told myself I’d be back to work in four. Four weeks after surgery, I found myself still sleeping uncomfortably on the couch, lacking arm mobility, and not yet recovered from a surgery that was far more intricate than I had expected.

Had I chosen to allow myself to give cancer the air that was warranted, I would have asked questions and prepared myself to undergo such a major surgery. After my mastectomy, I learned that there are pillows that could have helped me sleep more comfortably, and that physical therapy could have eased my pain and increased my mobility.

2. I Wish I Had Trusted My Gut More and Asked Questions

Even though I mostly buried my head in the sand, there were times when I did have questions … and I didn’t ask them. When I was told about my reconstruction, things were presented as a given, not an option. I was told not to worry, that “everything will be fine,” and that I’d be satisfied with my reconstruction. I felt my plastic surgeon wasn’t listening to me; I was leaving appointments with more unease than I’d come in with, but I told myself it would be okay. It had to be okay. I didn’t feel like I had time to find another plastic surgeon. Plus, everything being fine was a part of the plan. So, I ignored my gut and pushed forward. After all, doctors were the experts.

In the end, not surprisingly, I was not happy with my reconstruction. I wish I had listened to my gut and taken the time I needed to make an informed decision, rather than simply accepting what was put in front of me.

3. I Wish I Had Treated My Feelings as Valid

I remember being so frustrated, sad, and angry after my surgery. My mom brought up the possibility of a revision surgery, and at the time, I told her no, I didn’t want more surgeries. I hadn’t even begun chemotherapy, and I was sick of cancer. I felt like I was supposed to feel lucky that the surgery was deemed successful, and that the cancer didn’t seem to have spread to my lymph nodes.

I told myself now was not the time for vanity. What I couldn’t quite understand was that mixed emotions were normal and okay. I could feel both happy and dissatisfied at the same time. Similar dichotomous emotions came up when I froze my eggs. I felt lucky to be given the opportunity to freeze them, but also so mad that I was forced to make a decision about the chance of future children.

The truth is, there is no right way to feel, and I wish I had stopped fighting how I felt. Everyone has different experiences, desires, and feelings. Each experience is unique, and each experience is valid.

4. I Wish I Had Looked for a Community Sooner

I felt so alone after my surgery. I sat in an empty house all day, unable to do much independently. It wasn't until I was a week away from chemo and had started looking for how to style scarves and head wraps on Instagram that I ended up finding women who had just started treatment or were a few weeks or months ahead of me.

I didn’t know that this is what I needed, but it was. I wasn’t alone. I wasn’t the only one feeling this way about my diagnosis, surgery, and chemo. I spent hours reading their stories and looking at their photos. Their stories validated my own feelings. As a result, I began to feel less afraid. I saw that accepting and talking about cancer didn't mean that cancer became me. Instead, it showed me that owning my experience could be empowering. It was okay for cancer to be part of my story.

When I relinquished control over something that I never really had any control over, I felt more free to be able to feel what I was feeling about my diagnosis and treatment. Cancer did take air. It did change my life. Now, on the other side of treatment, I can see that it is — and always will be — a part of me. But it isn’t all of me.

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