Patient – Frantic Shanti

^{(Photo by Joshua Hoehne on Unsplash)}

The first devastating realization I had following my breast cancer diagnosis was that I was now a cancer patient. In my mind I immediately went from “happy-go-lucky, fitter-than-average” to “sick beyond belief”.

Except that nothing physical had changed. But my mindset had. And when I found out that my triple-positive tumor was going to require chemo, I knew that everyone else was going to be aware of my hairless, frail status.

Cancer. Patient. I imagined myself pathetic and scrawny, walking around hunched over in a hospital gown with light shining off my bald scalp. Sounds dramatic, huh?

How do your labels affect you?
(Photo by engin akyurt on Unsplash)

Recently, however, I learned that there’s been a change in the language surrounding those individuals who have been diagnosed, are undergoing treatment for or have finished cancer treatment. The word “patient” as it relates to someone’s status has been supplanted by “survivor” much earlier in their cancer experience.

This is curious to me because I went through a mini identity crisis after I was done with chemo and radiation–I thought that only then could I start calling myself a (hopeful) cancer survivor. But I was a bit anxious about doing so, because I didn’t know whether I truly deserved that title. I thought that I needed to have some special designation before I qualified as a survivor.

These days, the survivor label is given when you receive a diagnosis. The idea is that while initially we didn’t know your status, now that we’ve confirmed your tumor, you are going through the experience of surviving the disease. As stated on the Cancer.net site, “When people talk about ‘survivorship,’ they are usually referring to navigating their life experiences and challenges resulting from their cancer diagnosis.” Read more about how ‘survivor’ is used here.

This sounds a lot better to me than using the term “patient”. By referring to myself as a patient when I didn’t have any reason to–meaning no physical symptoms–I was imagining myself sicker than I really was, which increased my anxiety levels. That made my entire experience worse and it didn’t have to. I did that to myself (‘cept that I was only using the common labels of the time).

How are you choosing to define yourself?
(Photo by Brett Jordan on Unsplash)

Instead of putting my energies into dealing with the side effects of treatment, I went down a dark hole.

Language matters! While there’s no doubt that cancer brings on stress and anxiety, terminology can make a difference in your cancer experience and that can either help or hinder you in the process.

So I urge you to consider the words you use to refer to yourself and pay extra attention to how that feels to you. You could be making yourself miserable without even realizing that you have some control over this.

This was the situation: I finished chemo, finished radiation. I had gotten to bang the “Whoopie! I’m done!” gong in the radiation oncology patient waiting area — very satisfying. I had my “exit interview” with the cancer staff. The worst was over.

Every cancer patient looks forward to the end of treatment and a clean bill of health. As a matter of fact, I’d been so focused on finishing that even when I could see the light at the end of the tunnel, I really couldn’t see past that point. Chemo was the monster that consumed me. I had dreamed about the end of treatment for weeks and weeks, trying to hold on mentally until that final infusion, and after that, the last radiation appointment. Finally, that day had come.

However, I still parked in the familiar “cancer patient” spots in the parking garage that allowed me quicker access to the hospital buildings, a necessity on busy days when I needed to get to my appointments promptly. My chemo port was still in because I would be receiving Herceptin (monoclonal antibody) infusions for about six more months, and even though Herceptin doesn’t have noticeable side effects, it had the potential to affect my heart.

So was I well? Was I sick? The tumor was gone, the treatment was over, my scans had come back clear, but the questions remained. My sense of self had experienced a powerful upheaval during treatment and I felt lost. As much as I hated it, I’d become comfortable with the idea of being a cancer patient. That was the known. The unknown was what came after that.

The unknown is scary and the uncertainty doesn’t simply go away. When you’re a patient, your medical team works out a plan based on your specific situation, and that’s your roadmap for the length of your treatment. When you pass into survivorship, you travel off the edge of the map. The remission rate for breast cancer is remarkably good, but it’s not guaranteed.

At some point, I left the map. I have the rest of my life to get comfortable navigating through what comes next.

Tag: Patient

Patient vs. Survivor: The Impact of a Label

Cancer Patient vs. Cancer Survivor