What we call ourselves

What We Call Ourselves

During the past few years, I’ve reflected on the terms people use to describe their life with cancer. Initially, I tried to write a glossary of the terms: hero, warrior, fighter, veteran, graduate, survivor, victim or living with cancer.

In trying this out with a few friends, one having gone through a comparable experience, one not, it didn’t work.

People adopt different terms at different stages; a journey approach captures this better than an analytical approach.

Rather than the Kubler-Ross five stages (denial, anger, bargaining, depression, acceptance), written for the terminally ill, I find the William Bridges framework in “Transitions: Making Sense of Life’s Changes” more helpful.

Bridges talks about three phases: ending (or losing and letting go), the neutral zone (in between, or ambiguous phase) and the new beginning (acceptance and embracing).

Circumstances change quickly, transitions take time. This provides a convenient frame for cancer: from “normal” to a new “normal,” which we can accept, if not embrace.

Ending, losing and letting go
Our life falls apart when we are diagnosed with cancer. Our normal view is shattered, our expectations crushed and we have an overwhelming sense of loss. Cancer isn’t a pink ribbon; a slogan like “cancer sucks” captures our mood. We tend to be inward focused, coming to terms with our thoughts and feelings.

Victim: We may see ourselves as victims. We have lost our previous healthy life. We are angry (why me?). We feel injured, destroyed and even sacrificed, without any reason or cause.Viewing ourselves as victims can be part of our first defense and resistance.Cancer happened to us: we are powerless, we cede control to medical experts to do “things” to us (chemo, radiation, other); our role is limited to understanding and consent.

Remaining a “victim” can reduce responsibility for lifestyle factors (tobacco, diet, exercise) and for how we handle and respond to cancer, its treatment and ones around us.

The neutral zone: This is the period of realignment and repatterning, and helping us get through it.

As we come to terms with our diagnosis and proceed to treatment, war metaphors come into play. “I’m going to beat/fight/conquer this.” We choose accordingly, agreeing to the most aggressive treatment our bodies can withstand. We learn our new identity as a patient, and drift away from our previous professional and personal identity.

We start to form our response, focus on what to do, seek meaning in the face of the fear of dying and assess what it all means for one’s relationships with those closest.

Two terms “warrior” and “hero” best reflect this stage.

Warrior or fighter (or conqueror, activist): We adopt the “war against cancer” metaphors. We try to “will” ourselves through each chemo or radiation round. We fight the side effects (helped by meds). While we know that cancer is the body fighting itself, we often consider cancer as somehow external to assist the “battle.”

We are drawn to the primal nature of the will to survive, given the life and death struggle we are in.

Fighting empowers us, we feel more in control and have the goal of “beating” this. We take a more positive attitude to the “slings and arrows” of treatment, and are more active in recovery (e.g., exercise etc.).

Although the treatment and medical team do most of the work, we view them, along with family and friends, as our “platoon” or “allies” supporting us.

We risk sometimes not knowing when to give up, when further treatment will not improve our quality of life and longevity.

Hero: Similarly as warriors, we are admired for our courage in how we deal with cancer, particularly the character we demonstrate through rough treatments and side effects.

However, we don’t choose cancer, it chooses us. We haven’t voluntarily or professionally thrown ourselves into a dangerous situation (e.g., fire fighters, military), we just find ourselves there.

We do, however, choose how we react to our cancer. The term hero reflects that some reactions are more motivating and admirable to those around us.

As we go through the transition phase, we likely are starting to identify our future identity.

The new beginning
We stop looking back. We get on with our life post-recovery. We come to terms with what’s the same and what’s changed. We define our “new normal.” We keep in the back of our minds that time is precious, may be limited and that our cancer could come back.

We use a number of terms to describe ourselves, reflecting in part who we are as much as what we’ve gone through.

Intern, student and graduate: As our treatment progresses, so does our transition. We progress from being interns (diagnosis), to students (treatment) to graduate (recovery and post-recovery). We’ve learned how to be a patient and studied far too much information on our cancer and treatment. At the end, we have a mix of theoretical and “living through it” knowledge that allows us to graduate.

This transition also takes place on an emotional level. As an intern, we may be angry and frustrated. As a graduate, we have largely come to terms with what our cancer means for the future.

We still need to define what “graduation” means (normal or new normal). And given the incurable (but not necessarily untreatable) nature of many cancers, our graduation may be more emotional in nature.

Survivor: We have undergone difficult and harsh treatment, along with the emotions and life lessons that go with it. We made it through and are back to hopefully a normal, or near normal life.

However, we are privileged survivors. We had the care and support of our medical teams, family and friends.

In response to the widespread use of survivors, some of us use alternate names: “alive-rs” or “thrive-rs” (to have a more positive and active tone, some element of warriors) or “die-rs” (for some who are terminally ill and reject optimistic language).

Veteran: We undergo harsh and unforgiving chemo and radiation treatment, where the “war” metaphor applies, lasting six months to a year or even longer. Relapse can lengthen this. Recovery takes time, at both the physical and emotional level.

As veterans we’re marked by our experience, given its intensity and the life-altering change in perspective and related life lessons. Similar to survivors we feel solidarity with others in a similar experience, whether cancer or another disease, and are recognized in return.

One’s personal “war against cancer” may or may not be over, depending on whether one’s cancer is in remission or whether one has suffered ongoing “collateral damage” in the form of chronic conditions or psychological issues. We either accept this or not. Not accepting is akin to remaining a warrior, struggling and fighting.

Living with cancer
As I thought about and worked through these terms, it became more and more clear that there was no one term that worked throughout the three phases of endings, neutral zone and new beginning, and that each person had to find the terms that best helped them at each stage, or the mixture of terms that continue to resonate.

My preferred term is “living with cancer” or, to use Christopher Hitchens’ irreverent expression, “a touch of cancer.” I have largely accepted my “new beginning” with equanimity.

But other elements remain. I started as a victim and the warrior or fighter metaphor has helped drive my recovery through exercise and other activities. I also consider myself a veteran. I have more knowledge and experience than desired and this continues to mark me in many ways.

I feel uncomfortable with the terms hero and survivor, as these may diminish heroes and survivors of more dramatic or worse experiences. However, every now and then, the power of the survivor metaphor hits me, captured by the song, “I Will Survive”:

Go on now go, 
Walk out the door, 
Just turn around now, 
Cause you’re not welcome anymore, 
Weren’t you the one who tried to hurt me with goodbyes 
Do you think I’d crumble? 
Do you think I’d lay down and die? 
Oh no not I

I will survive 
Oh as long as I know how to love  
I know I’ll stay alive I’ve got all my life to live 
I’ve got all my love to give 
I will survive 
I will survive 
Hey hey!

In the end, we need to find the term, or terms, that work best for each of us. I hope that these reflections on what we can call ourselves helps each of you in your own journey and transition.