A group of people having coffee with coffee mug labels that say survivor and caregiver

Cancer Labels: What Does It Mean to be a Survivor? A Caregiver?

I recently participated in a wonderful celebration of cancer survivorship at the medical center where I receive treatment, University of Chicago. It was the first of what will hopefully become an annual event called Survive.Thrive.Celebrate and included refreshments, panel speakers, and exhibits by providers of supportive services.

Eye-opening conversations

Before it started, I had an eye-opening conversation with a young woman near the coffee table. Did I mention that I left my house at 7:30am on a Saturday to get to this celebration? I was definitely hanging out at the coffee table!

This woman had stage 4 colorectal cancer and she told me she wasn’t completely sure if she should attend this celebration since she was in treatment and therefore wasn’t truly a survivor. Of course, I immediately reassured her that I was in treatment as well and being a survivor starts the moment you are diagnosed with cancer. I spoke on the survivorship panel at the event and made sure that every cancer patient in the room knew they were survivors, whether they had finished treatment or were in active treatment.

The significance of labels

This made me think about the power of cancer labels, however. There are so many people out there now who are living with cancer in a way similar to a chronic disease. It breaks my heart to think that some of these people do not believe they are survivors because they are surviving with cancer, but not “cured.” In the lung cancer community, there are many who dislike the label “survivor” for that very reason. I don’t think I truly realized the significance of the difference between being a survivor and surviving with cancer until this event and conversation.

Another interesting thing happened at the University of Chicago event. When the moderator of the survivorship panel asked how many people in the room were caregivers, my husband didn’t raise his hand! I even gave him the evil eye from the stage, but he still wouldn’t raise his hand! Later on, I asked him why and he explained that he doesn’t really think about himself as a “caregiver” because I don’t need daily assistance from him to manage my everyday life. He says that he thinks of himself more as a “caretaker” than a “caregiver” because he feels that he doesn’t really do anything unless he is needed for something specific, such as accompanying me to a doctor’s appointment.

Do these labels work for you?

So, this was a major revelation to me that labels don’t work for everyone connected to a cancer diagnosis! I already knew that not everyone likes the term “survivor” and maybe there are others out there similar to my husband who don’t like the “caregiver” label. By the way, I informed him that as a result of being married to me, he is my caregiver; it isn’t necessary for him to be on a particular schedule for giving care!

So what did I learn from these exchanges? I don’t think it is necessary to stop using the terms “survivor” or “caregiver.” I just think we need to be a little more conscious of how these labels can make people feel. When using these words myself in the future, I plan to publicly acknowledge, whenever possible, what I believe defines a survivor and a caregiver in the broadest sense of the terms.

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