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What we call ourselves – finding the right term

by Andrew Griffith

reprinted with permission from MD Anderson

Over the past few years, I have reflected on the terms people use to describe their life with cancer. I initially 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 did not work. People adopt different terms at different stages; a journey approach captures this better than an analytical approach.

Rather than the Kubler-Ross1 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 first diagnosed with cancer. Our normal view is shattered, our expectations crushed, and we have an overwhelming sense of loss. Cancer is not a pink ribbon; slogans like ‘cancer sucks’ or ‘f*** cancer’ capture our mood. We tend to be inward focussed, 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. Even smokers with lung cancer may say ‘Why me?’ and why not x who smoked more than me.

Viewing ourselves as victims can be part of our first defence 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’ (unless terminal). We choose accordingly, agreeing to the most aggressive treatment our bodies can withstand. We learn our new identity as patient, and drift away from our previous professional and personal identity.

We start to form our response, focussing on what to do, seeking meaning given fear of dying, and what it means for one’s relationships with those closest to one.

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. And there is remains the physical and emotional toll of this battle.

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 treatment and side effects.

However, we do not choose cancer, it chooses us. We have not 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 is the same and what has changed. We define our ‘new normal’. We keep at the back of our minds that time is precious, may be limited, and that our cancer could come back.

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

Intern, Student and Graduate:  As our treatment progresses, so does our transition. At a simple level, we progress from being interns (diagnosis), to students (treatment) to graduate (recovery and post-recovery). We have learnt how to be a patient, we have studied far too much information on our cancer and treatment, and at the end, we have a mix of theoretical and ‘living through it’ knowledge that allows us to graduate (and hopefully not have to go back to school!).

This transition also takes place on the 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 life (prospering) or near normal life (closer to existing). We are recognized by others as survivors, as most people have a sense of the horrors of cancer treatment.

However, we are privileged survivors. We had the care and support of our medical teams, family and friends unlike survivors of concentration camps and other atrocities.

In response to the widespread use of survivors, some of us use alternates names: alivers or thrivers (to have a more positive and active tone, some element of warriors) or diers (for some terminal ill who 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 are 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 with similar experience, whether cancer or other 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.

 

As I thought 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 off as a victim, and the warrior or fighter metaphor has helped drive, and continue to 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.



Reference:

[1] In her book, On Death and Dying


 

Andrew Griffith has mantle cell lymphoma and has 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, has just finished writing a book on his journey, and can be followed on Twitter @lymphomajourney.

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