There’s No Denying Cancer Survivorship Is Hard, But We Can Get Through It

As cancer thrivers and caregivers, we tend to know all too well the loaded emotions that come with significant milestones of one’s cancer journey.

But once patients ring that bell, stop taking the pills, or receive a certificate of completion, the next phase of this journey seems to unknowingly begin without notice. We call this survivorship.

Contrary to what people outside of the cancer world may think, survivorship is hard. It took some commitment to a new kind of growth, as well as letting go of commitments, but survivorship is manageable and conquerable, especially when you know you’re not alone.

Experience Changed My Views on Survivorship

Before I faced triple-negative breast cancer (TNBC) at 28, I regarded my friends’ and acquaintances' survivorship status as them having won their race. They faced their battles and came out on top; they could now live their life. Or maybe it was that I wanted to see them live their life once again without their world revolving around cancer. Regardless, from an inexperienced vantage point, their real struggle was in the past.

However, once it was time for me to look survivorship in the eye, my thoughts on this phase quickly evolved. For one, I don’t think I realized I was facing survivorship until I felt like I was completely lost and alone in the big blue ocean that Nemo’s dad warns him about in “Finding Nemo.” All of a sudden, I was in uncharted territory — and I was in deep.

I think this happens to many of us on this wild ride. As ideal as it would be to have all the cancer-related struggles behind us, that is just not the case for everyone. As survivors, upon completion of active treatment, we now need time to process all that just happened and space to heal physically, mentally and emotionally as we enter our next chapter.

Going From Active Treatment to Survivorship

During active treatment, I had each plan moving forward laid out and discussed at length with my incredible medical team. Not only did I feel prepared with my current plans of attack against TNBC, I felt prepared with the back-up plan if something didn’t work, and the back-up of that back-up plan if necessary.

My active treatment marathon went something like this: finding the lump in August of 2020, getting diagnosed in September, completing eight rounds of dose-dense AC/T chemotherapy from October through February, getting my bilateral mastectomy in March, attending fill appointments in April and having my final swap surgery in June.

I was so closely monitored for months while sporting a daily mindset to fight for my life, and then the cord was cut.

“We’ll see you in a month,” and “we can now move on to three-month follow-up appointments,” my doctors had said. That transition felt uncomfortably abrupt.

After months of being hyper in-tune with my body, it was hard for me to feel things happening without a need to report them to anyone in real time like I had just done nearly each week since the previous summer. As a TNBC survivor, we do not get many follow-up scans. From my experience and current knowledge, scans tend to happen if there is a symptom that warrants it. That was also difficult to accept.

It was clear that my cancer struggles were not in the past. In their place, new challenges came to light. On some days I felt great and did not think about cancer. On others, I would be out and receive a compliment on my chic “haircut” and get flooded with loaded thoughts and emotions. And then there were days that I would be completely consumed by anxiety that a recurrence was happening, and we were going to miss it because I wasn’t under the constant watchful eye of my medical team.

I said yes to a hiking trip in Utah two months after my last surgery knowing that I would do what I could.

“I feel my bones,” I said to my oncology nurse one day on the phone with tears in my eyes during one of these episodes. It felt like little pulses of my body waking back up. I questioned if it was OK that I was home by myself for longer periods of time without any appointments or people checking on me. After that call (and a pop-in visit to my oncology center where I full-on broke down) my nurse hugged me and suggested I consider therapy. It was always an option during treatment, but now it felt necessary. The survivorship phase was new, and I needed to add new tools to my toolbox to conquer it.

5 Things That Helped Me Transition in Survivorship

Here are a few things that helped me:

1. Asking for help to face what I was feeling head-on. I recognized that something was not right and called my team and fellow survivor friends to address these thoughts and feelings.
2. Starting therapy. My doctor listened to my thoughts and introduced me to new tools that helped me identify my worries and better regulate them.
3. Engaging in peer-to-peer communication. Communicating with others who have experienced a similar life event as you can be beneficial to your emotional and mental health. You are not alone, and we are better together. I participated in the Triple-Negative Breast Cancer Foundation’s Tuesdays with TNBC Friends. It’s a monthly Zoom call with fellow TNBC thrivers in different phases of treatment and survivorship. These women get it. And they get me. When I told them I could feel my bones, guess what happened? Laughter… with me. Because we’ve all been there.
4. Saying YES to new experiences without fear of failure. In time, I signed up for a nine-week inner-work course, committed to meaningful visits with friends and family, bought a dream car, said yes to a hiking trip in Utah two months after my last surgery knowing I would do what I could, started a new opportunity that challenged my brain and got me involved with our local community and joined a new gym to move my body. These small actions helped lift my spirits and get me back on my feet.
5. Advocacy. I continued to use my voice and experience to raise awareness for breast cancer in young women, the importance of being your own advocate and kindness.

Survivre

One of my favorite things I learned early in my journey was the concept of “survivre” — not just “survive.” Survivre, when broken down from French into its two root words, means on to live — opposed to the English version of “survive,” which can feel like you’ve made it while barely hanging on.

Today, I am proud to survivre and live onward. All days are not sunshine and blue skies, but I have built a solid foundation to face this next phase of the journey. If you or someone you know has struggled with survivorship, they are not alone. Survivorship can be hard, but it can be faced.

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