By Andrew Griffith
Andrew Griffith has mantle cell lymphoma and had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com, is working on a book on his journey and can be followed on Twitter @lymphomajourney.
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.
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.
Read part II of What we call ourselves -- finding the right term for cancer
Read more posts by Andrew Griffith