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What we call ourselves -- finding the right term for cancer part II

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120524graduate.jpgBy 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.

Part II of yesterday's post: What we call ourselves -- finding the right term for cancer

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.

Read more posts by Andrew Griffith

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