The Complexities of Identifying as a Cancer Survivor

From diagnosis day in August of 2023 others around me have been calling me a survivor. I have mixed feelings about this. So far, I’ve been through two surgeries, chemotherapy, radiation, and now I’m on my second aromatase inhibitor with a plethora of side effects that I struggle to cope with in my current everyday life. I took leave from work through the worst part of chemo and radiation from November 2023 to April 2024. I’ve been back to work/life since, the best I can. People want to think that you’re magically better after chemo and radiation if you survive. They will tell you about people with super resilience who appear to have no struggles and sailed all through every treatment like it was nothing. I wonder about these super achievers… are they really so wonderful or are they just masking? Because my reality, and for those in the cancer groups I’m in, is not that.

I work full time with regular overtime and do other things as my energy allows. I’m living my life as it is now. I live with muscle, bone, and joint pain that has altered my mobility and stamina. I live with nausea, vomiting, constipation, and diarrhea. I live with brain fog and neuropathy in my hands and feet that have not gone away yet and may never go away. I go to work even when the insomnia caused by the AI only allows me three- or four-hours sleep. I get confused with words and thoughts sometimes. I get lost driving if Google is not guiding me. I’m still fatigued most of the time. When I sweat it still stings my skin all over my body from the healing poison that I’m still excreting.

But hey, my hair is back so I must be okay, right!?!

I generally don’t tell people outside of a close circle about how I’m feeling because people just don’t want to hear it. I just push through.

This is on my mind because a person who is close to me hears about how I’m really feeling on any given day when they ask me how I am. This person said to me recently that I should focus on getting back to life. Then a few days later the same person said that I should identify as a survivor, not a cancer patient. (I’m not referring to my husband who sees the nitty gritty.) Maybe their comments were meant to be supportive in some way, but it came off as dismissive and opened a conversation of definitions that caused me to feel less seen and wanting to retreat. It also elicited defensiveness and survivor guilt because my sister lasted just eight brutal weeks after her cancer diagnosis in March of 2023. Comparison to super achievers or the deceased does not feel great. That’s what’s going on in my head. I should be better, be more… or I should be dead.

Do I need to justify my existence, my journey, my suffering – the survival that I live with? Maybe I should be silenced. Maybe that would be easier – but for who? The power of positivism is sometimes real and sometimes it’s not. And it’s sometimes elusive.

This is why I have shared little and then less on my socials and with family and friends. I am surviving but I am also in recovery and I’m also still in treatment. This cancer/treatment is not who I am but it’s a constant companion for me. I don’t have much bandwidth for supporting others in how they think I should be.

Patient versus Survivor

The following is what I can tell you. The journey through cancer treatment is a deeply personal and unique experience for each individual. The term “cancer survivor” often evokes mixed emotions and differing interpretations, leading to important discussions about its true meaning and application.

For many, myself and others in cancer support groups, being labeled a cancer survivor from the moment of diagnosis can seem premature and, at times, even dismissive. The battle against cancer involves a series of grueling treatments, including surgeries, chemotherapy, and radiation, which do not end with the conclusion of these procedures. For those continuing their fight through medications such as aromatase inhibitors, the notion of being “in treatment” remains a daily reality.

The emotional weight carried by the term “survivor” is significant. It suggests a finality and a victory that some may not feel they have yet achieved. The desire to identify as a survivor only when a doctor can confirm with certainty that there is no longer any evidence of disease is a sentiment shared by many. This cautious approach recognized the ongoing nature of living with and managing cancer, acknowledging that the journey is far from over.

When loved ones and well-meaning individuals encourage patients to embrace the survivor label, it can sometimes feel dismissive of the continued struggles and uncertainties faced. This is especially true when the term does not resonate with the patient’s current reality. It’s important for family and friends to understand and respect the patient’s perspective, recognizing that each person’s path to healing and self-identification is different.

For those grappling with this terminology, it is essential to honor their feelings and choices. Whether identifying as a cancer patient or a survivor, the label should reflect their personal experience and comfort level. Words carry power, and the right to choose how one is identified in their cancer journey is a deeply personal decision.

Ultimately, the concept of survivorship in cancer is complex and multifaceted. If is not merely a milestone marked by the end of treatments but a continuum that encompasses the physical, emotional, and psychological aspects of living with and beyond cancer. The journey is ongoing, and each individual’s experience and choice of identity deserve to be acknowledged and respected.