By Susan Leigh, BSN, RN-Retired, Cancer Survivorship Consultant, Tucson, Arizona
vet-er-an – adj. Having served in a military force, especially during a war. Or experienced through long service or practice.
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 (now Hodgkin Lymphoma) 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 non-existent, in both circumstances. Yet, the Army at least offered a meager amount of basic training before thrusting us 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 hoped would be an experienced veteran or guide for us was still in basic training themself. And so the metaphors blossomed. The “war against cancer” lead 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 continued to be free of disease and the months turned into years, levels of trusting our physical bodies gradually increased and our obsessions about the cancer returning often decreased. Yet many, if not most, of us were (and 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 people 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 post traumatic stress disorder (PTSD), originally a problem identified in war veterans, was now shared with 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
So I have evolved from cancer victim to patient to survivor to thriver to advocate to activist….and sometimes maybe even to warrior. While I have been fortunate in 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 20’s, 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. So 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 is possible within our personal circumstances.
I am honored and grateful to be counted among the expanding ranks of veteran survivors….or whatever you want to call us!
UPDATE (2024): I recently found this article that I wrote 22 years ago, and was amazed at how applicable it still is today! Since then, I have added to my ever-growing list of late effects. Besides the breast and bladder cancers, I have also been diagnosed and successfully treated for early stage lung cancer (2016). But since 2013 my healthcare focus and worries have primarily been on cardiac problems (CHF, heart attack, stents, TAVR, Watchman, etc). Yet, I feel so thankful that most of my diagnoses have had some form of treatment available – treatments that not too many years ago simply did exist. So, with all the unknowns in life, health-wise and just day to day living, my challenge is to adapt to whatever comes my way. Don’t get me wrong! I still have anxieties and angst about my health. But I am truly grateful, not only for the luxury of aging, but also for the increasing knowledge, resources and support that is currently available to us. Our work is certainly not done, though. We must continue to advocate for expanded access to quality cancer care from the moment of diagnosis through long-term survival. Our voices must be heard!
(Special thanks to my chosen organizations, the National Coalition for Cancer Survivorship (Veteran NCCS) and Hodgkin’s International (Newbie HI) for the tireless work being done for all survivors.)
Leigh, S. (2002). Veteran survivor: From victim to activist. C.U.R.E.: Cancer Updates, Research, and Education, 1(2), 64-66. Summer issue.