By Susan Leigh, RN

It was not too long ago that pairing the word “cancer” with either survivor or veteran seemed like a contradiction in terms.  When I was first diagnosed with Hodgkin’s disease 30 years ago‚ these terms were simply not a part of the cancer vocabulary.  Many people still talked about growths and blood disorders rather than saying the word “cancer.” Some people still called it the “big C” or uttered the word in hushed tones or thought it was contagious. Once diagnosed‚ we were frequently referred to as cancer victims‚ thus propagating a sense of powerlessness. But this was 1972‚ and‚ as the war in Vietnam was winding down‚ the “War on Cancer” was just beginning.

Metaphors and Cancer
As a young Army nurse‚ I knew something about wars.  I had barely returned from a tour of duty in Vietnam when I was diagnosed with cancer. I had just survived an actual military war only to find myself thrust into a disease–related metaphorical war.  My coping skills were severely limited‚ if not nonexistent‚ in both circumstances. Yet‚ the Army at least offered a meager amount of basic training before thrusting me into a war zone.  No such training existed in the cancer arena‚ and surviving the disease and treatment was strictly by trial and error.

This idea of trying to overcome or beat cancer took us into such new and foreign territory that whomever we looked to as an experienced veteran or guide for us was also still in basic training.  And so the metaphors blossomed. The “war against cancer” led to tumor invasions‚ chemical warfare‚ targeted therapies‚ and damaged defenses. Treatments were described as slash‚ burn‚ and poison. The ultimate goal became defeating cancer and declaring victory over a once–fatal disease.  Anything less was failure. Yet few of us were even remotely prepared to battle this frightening disease using the new weaponry of chemotherapy and radiation therapy.  So we looked to our physicians as commanding officers‚ put all our trust in their leadership‚ and blindly followed them into the cancer combat zone.

Eventually‚ some of the people dealing with cancer voiced a strong dislike for the military metaphors and images that seemed more distressing and damaging than healing.  The common scripts used during guided imagery—those that targeted cancer cells with weapons or some means of war–like destruction—were frequently being replaced by gentleness‚ prayer‚ or healing affirmations.  How long one lived was no longer the only measure of success. Quality of life measured how well one lived after diagnosis and treatments‚ and our overall emotional‚ social‚ and spiritual well-being began to also warrant attention. To me‚ this seemed like a healthy evolution to responsible cancer care that took the triad of mind–body–spirit into account.

Challenges of Survival
Meanwhile‚ those of us who made it through and beyond the initial grueling treatments now had to figure out what to do with the rest of our lives. Many of us lived months and years in the state called “sustained remission” or “watchful waiting.” Others kept the disease under control‚ often for years‚ by either switching treatments or continuing on maintenance therapies.  Some of us were even considered cured and part of a new population of long–term survivors—or‚ to keep the metaphors flowing‚ veterans of the first effective cancer wars.  Yet the luxury of long–term survival brought its own new set of challenges.
 
Each of us was unique in how we dealt with our own survival.  As we continue to be free of disease and the months turn into years‚ levels of trusting our physical bodies gradually increase and our obsessions about the cancer returning often decrease.  Yet many‚ if not most‚ of us are always on the lookout for any sign of trouble.  I actually became an oncology nurse in order to deal with chronic anxieties.
 
To some‚ this seemed totally counterproductive to a healthy recovery.  
Why didn’t I just forget about cancer and move on? Well‚ to me it was a safety net so that if something was suspicious‚ I had oncology experts right at my fingertips. I also felt I had something to offer this new specialty of cancer care‚ something that emerged from “trial by fire“and “having been there.” Obviously‚ this line of thinking or action would not work for everyone‚ but it seemed right for me at the time‚ especially since there was little understanding and few support networks available for those of us who lived on.Undoubtedly‚ my personal experiences and ideations permeated my professional life as an oncology nurse. I frequently met or cared for long–term survivors who were diagnosed with recurrent disease (sometimes many years after the initial diagnosis) or other cancers (often caused by their original treatment).  Many more survivors were experiencing late effects of therapy‚ such as early–onset osteoporosis‚ cardiac and pulmonary disease‚ lymphedema‚ or chronic prolonged fatigue. Family members‚ friends‚ and many healthcare providers could not understand the depth of our survival trauma‚ or why we continued to harbor anxieties about cancer.  The diagnosis of posttraumatic stress disorder (PTSD)‚ originally a problem identified in war veterans‚ was also diagnosed in cancer survivors.  And society in general seemed to penalize us by denying insurance coverage‚ challenging our rights in the workplace‚ or disallowing continued access to follow up by our cancer specialists.  So there will always be work for those of us who choose a career in cancer advocacy.

Evolution
It’s been 30 years since I was diagnosed with cancer and‚ while I have been fortunate that the original Hodgkin’s disease has not recurred‚ I have subsequently been diagnosed with breast cancer (1990) and bladder cancer (1995). Both were found at early stages and treatments were successful. I also experienced premature menopause in my 20s‚ and later was diagnosed with hypothyroidism and then osteoporosis—all somewhat treatable. Also‚ my immune system acts in mysterious ways‚ especially when I get stressed‚ I am always on the lookout for unexplained symptoms‚ particularly as I grow older; and new cancer diagnoses elicit feelings that range from serious inconvenience to paralyzing fear. I remain forever vigilant and continue my quest for knowledge‚ support‚ resources‚ and understanding that will help me and other survivors to be as healthy as possible within our personal circumstances.

I have evolved from cancer victim to patient to survivor to thriver to advocate to activist …and sometimes maybe even to warrior. I am honored and grateful to be counted among the expanding ranks of veteran survivors.