|TELLING YOUR STORY
|Year : 2018 | Volume
| Issue : 3 | Page : 290-295
A Nurse's Journey with Cancer
Neila Salamanca Mapi
Medical Clinic, Medical Specialists and Diagnostic Center (MSDC) The Philippine Women's University, Manila, Philippines
|Date of Submission||02-Feb-2018|
|Date of Acceptance||01-Mar-2018|
|Date of Web Publication||31-May-2018|
Neila Salamanca Mapi
Medical Clinic, The Philippine Women's University, Manila
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Mapi NS. A Nurse's Journey with Cancer. Asia Pac J Oncol Nurs 2018;5:290-5
A new feature has been launched with this issue. We are calling it: “Telling the Story”. Each story is a true account of a nurse who finds him or herself in the role of both nurse and patient.
Authors of this new feature have the option of identifying him or herself and if they wish, can chose to provide a way for readers to contact them. As editor I will make every attempt to check what is written is true, accurate and has actually been experienced by the author. I am excited to add this new feature to the journal and look to you, our readers, to let us know your impressions. We also look to you to contribute your own personal stories.
This first story has been well written and is reflective of what the nurse author truly experienced. She openly shares her feelings from the first reaction of disbelief that she has cancer to, overtime, coming to grips with the fact that she is not only a nurse but is also now a cancer patient. Her insights, I believe, sheds light on the interplay between facing reality and feelings of fear and anxiety. One needs to believe they have the courage and confidence to move into the unknown world of being a cancer patient. You will recognize this author describes as she strives to reach that point.
---Judi Johnson, PhD, RN, FAAN
Asia-Pacific Journal of Oncology Nursing
Nurses are referred to as the heart or backbone of health care. In these modern times, the nursing profession has become more demanding and multidimensional in order to respond to the rapid change and trends in health care. Thus, nurses' roles have expanded from monotonous bedside nursing to becoming leaders, educators, and independent practitioners. However, regardless of how resilient the nursing workforce can be, they are not immune to illness. The very nature of the job of nurses and other health-care professionals places them in a variety of dangerous workplace situations and environments that pose risks and threats to their health.
Today, most nurses work extremely strenuously, and due to the unfavorable workplace situations and exposures to workplace hazards, they become more vulnerable to diseases. One common disease that nurses are not spared is having cancer. Often referred to as the Big “C,” this dreaded and life-threatening disease knows no boundaries, and it affects all ages, races, color, ethnicities, and hits anyone regardless of their profession. May it be occupational, genetic, or environment related, the diagnosis of cancer in a nurse will cause a deep impact and profound effects in all dimensions of life.
I am a nurse, and, I too, am walking in the shoes of patient, along with thousands of nurses and other health-care professionals whose lives were disrupted, shattered, or lost because of cancer. One might say, we are all but human beings so what if you are a nurse, what makes you different from others feeling that you should not get cancer? I agree that we are all human beings, but what makes a nurse so special and deserving that she gets cancer? It is depressing that nurses after taking care of other people's health and despite their knowledge of management and prevention of diseases would one day be diagnosed with cancer and suffer from its effects just like the patients. But then again, there are no exceptions to becoming ill and diagnosed with cancer. It happens without any warning, like a bomb with no timer, deafening you with shock and disbelief, and shattering your entire world when you hear the words “you have cancer.”
In 2013, at the age of 43, my diagnosis of breast cancer (invasive ductal carcinoma stage 2A) came like a bomb to my life. First, it affected my being a mother, where my job and endless responsibilities required 24/7. I was then raising my three children at very tender ages (19, 11, and 5 years old). As they were born within different generations – they needed my love, time, guidance, and yes, they needed the individualized and holistic care that a nurse renders to her patients. I am a typical hands-on-working-mom, living with an average monthly income I was juggling my domestic chores and my nursing job. I was at the stage of giving all my time taking care of my children and using all my resources to provide their needs so that they would grow and bring out their best in everything, build their own lives, and learn to live independently in the future. This is my top priority as a mom and my dream as a parent.
Second, the devastating diagnosis of cancer came at a point of my life I considered as the peak of my career as a nurse, when I felt I had all the skills, knowledge, and confidence to deliver at my very best the nursing care needed by my patients. With all that optimism, I have come to love, appreciate, enjoy, and learn to be patient in my job taking care of people both sick and healthy, despite all the complexities within the nature of my nursing job combined with the struggles of motherhood. If sometimes I felt too tired and having that feeling of “burnout” as most nurses do, I would think about my patients who might be waiting for me as their nurse. Moreover, the friendship, camaraderie, and teamwork among my colleagues became an added motivation and inspiration for me to stick to my job as a nurse.
In 2011, my youngest child turned 3 years old and started going to school. I was so happy and fulfilled to see that I have finally gotten through the long years of babysitting my children as they were now growing and becoming more independent. It paved a way for me to finally find time for things that I had wanted to do but did not due to constraints. I felt that I had gained some freedom for myself and my diminishing self-esteem. One of the things I had been dreaming of was to pursue a master's degree in nursing. So, I made my plans and set my goals while I firmly stood with my commitment to make my children and their welfare my priority. I clearly plotted how my schedules at school added to my duties as a “full-time-working-mom,” so when I had the chance, I reorganized and enrolled in the postgraduate course. Graduate school went smoothly, giving me that feeling of satisfaction and pride in myself realizing that I can do more, and I can be more. At this very significant time of my life, cancer came like a bomb wrecking all my goals and dreams, seizing the freedom and fulfillment I had just regained for myself.
In the second year of my master's degree in nursing, the time came for me to enroll in writing my thesis and eventually propose a title subject. One of the topics listed that I am interested in researching was about the lived experiences of nurses becoming patients that when tables are turned, how it would affect or influence the nurse's professional and personal life. At the final stage of my research proposal, the panel asked me to choose one type of illness that could certainly affect or influence a nurse's professional and personal life. The idea of “nurses with cancer” came instantly into my mind, and the panelists agreed that it was interesting and relevant to research the journey of nurses with cancer. It became my thesis title. In my study, I had 12 nurses living with cancer as my respondents, some of them I personally knew, whom I invited to become my respondents. As soon as they agreed, I began to meet with them and listened to their narratives.
Notably, the thesis writing occupied almost all my time with all the bulk of different research articles to read, online searches, interviews, and writing a draft of the first three chapters to the point of disregarding a tiny lump I once felt in my right breast thinking that it could just be hormonal and would disappear after menstruation. However, the lump persisted and I felt it had grown over a few months to be a bit bigger in size; but, what prompted me to consult a doctor was the accompanying pain for more than a week. I consulted a breast surgeon, and a breast ultrasound was done. On the next day, I got a sealed white envelope in my hands that would tell the verdict. To open or not to open the envelope, I did not know because as a nurse, I knew what every written word in the results could mean. I thought it perhaps would be better if I just read the results at home. But in the middle of the street, I stopped walking, and a sudden impulse told me to open the envelope and read the impression–a BI-RADS category V, a highly malignant tumor.
In that particular moment, I was numb, my mind was blank and empty, no emotions, and no tears. I was in total shock and denial, all I could hear were the deafening echoes of my heartbeat saying that I had breast cancer. I do not even remember how I managed to get my bus ride home. I went on with my household chores as if nothing was bothering me. But, as I was lying in my bed that night, I thought of the narratives of the nurses I interviewed for my thesis, I never thought of myself as having breast cancer. In this moment, I asked myself, could this be a mere coincidence, a sort of test, or a joke to have breast cancer like the nurses I interviewed for my research? I resisted the thought but its true–I was one of them now. As required by my health condition, I had to take time out of my usual daily activities as a mother and nurse to be in the hospital for surgery. With a heart full of despair, I took leave from work and graduate school, locking in my drawer and saving in my computer the first chapters of the thesis I was writing about nurses with cancer, which, in that particular time of my life, were absolute pictures of the many paths and crossroads of the difficult journey I was about to take on.
During consultations with my breast surgeon about my forthcoming surgery (modified radical mastectomy/frozen section), discussions went on plainly and matter-of-factly. I felt and acted in an ordinary manner like a nurse advocating for her patient. It had not yet sunk in that I was really going to be the patient – the one being talked about. In my search of related literature for my thesis, I had read a study by Schwind  about nurse-teachers who became ill. One question was asked, “what happens when the patient is also a nurse?” Schwind expressed that “a duality exists in the nurse being a patient, there seems to be a dialectic coexisting within that person because of knowing, along with the fear of not knowing.” From the thesis that I had been writing, I remembered the narratives of my “nurses with cancer” respondents on their transition from being a nurse and becoming the patient, and now I could relate to their responses. We are all in the same space and time of overwhelming anxiety, confusion, fear, and uncertainty where our sense of self as nurse and an ordinary individual was threatened. In the review of related literature discussing the impact of cancer among nurses, I wrote these lines, “the experience of role reversal in becoming the recipient of care is a disconcerting and frustrating experience. It is being in a world that is both familiar and foreign, as the nurse gives up the authority and control in caring for others while submitting oneself as patient.”
I was admitted to the hospital 1 day before the scheduled surgery, 4 days before my 44th birthday. As I walked into my room, dressed in a hospital gown with a patient's tag on my wrist, I knew that for me, the tables had turned. I did not have a choice but to be “inside the side rails”, to be on the “other side of the stethoscope.” Though the nurses were all very cordial and efficient, I felt a sense of melancholy about being the patient instead of what I was, a nurse. The night before the surgery was peaceful but I did not sleep well. Nurses came in and out to check my vital signs and to give instructions repeatedly about the next day's 7 am operating room (OR) schedule. I could see myself in the face of the nurses in their uniform, and a voice inside me saying, “Hey, you know that's my job too.” Early morning on the day of the surgery, with just a few hours of sleep, I was wheeled to the OR. Seated in my wheelchair, I was placed in the queue with other patients at the OR's receiving area, perhaps there were ten of us at that time. I looked at their faces one by one, but nobody dared to say anything to anyone. I was wondering if it was really like this in an OR's receiving area, why people were not talking, and whether we felt the same? Every minute that passed by seemed like eternity and I felt that if I was not taken out in another minute, I will end up in the psychiatric unit.
Finally, we were each brought one by one to our assigned OR. The nurse put me in the stainless OR bed with a mattress as cold as iced water. I didn't know what I was feeling exactly, it was all mixed up with stress, fear, and confusion of what was in store for me, but still not enough to make me believe and convince myself that I had cancer, or that in a few hours, I would be officially diagnosed with cancer. I remained in denial and still hoping that the biopsy would be negative. Then I felt a chill in me, as my heart was pounding so loudly. After long years of working in different hospital areas, I had the real “feel” of the bright OR lights, the beeping sound of machines, intravenous (IV) lines inserted, and most of all the hunger and thirst from the doctor's order of light supper and “nothing by mouth” after midnight. My surgeon and her assistants, and the anesthesiologist all came early and greeted me with their smiling happy faces. As we were about to start, my surgeon explained again for the n th time that if the biopsy came out clean, they would close the incision and I would be awake in no time at all. But, if it was positive, they would go on with the modified radical mastectomy. I signed all the consents and waivers, there was no turning back. So, before I had closed my eyes to sleep, I told myself one thing that as soon as I woke up and regained my consciousness, I would search my chest to see if I am wrapped in a bandage or not. If not, I will go home right away, hug my children, and cook their favorite crunchy fried chicken. But, what if it's the other way around? I did not like the idea and could not accept the idea at all. Hours later, I woke up in the recovery room. I was cold, my throat felt dry, and I was confused and disoriented about the place. Then, I remembered what I had told myself before the anesthesia took over. I touched my chest with my trembling hands and it was wrapped in a tight bandage. In my semi-conscious state, my mind was shouting “No,” but I could not say any word to protest, and as much as I wanted to run away I fell in and out of deep slumber.
Since the day of my cancer diagnosis, my life has changed way beyond my imagination. All of a sudden, my life, as well as that of my family, was disrupted. I have to temporarily stop my usual normal routine as an ordinary individual and nurse to face the battle against “Big C.” I was discharged from the hospital after 3 days of confinement with a Jackson-Pratt drain and had a simple birthday celebration at home.
But even more than my hospital admission and discharge, what has bothered me most has been how to explain to my children the crises that our family was now facing – would they be able to understand, wondering how prepared could they be to face all the circumstances that were yet to come. After a month of rest and follow-up check-ups, I regained my strength and the incision in my right breast was completely healed. What was next scared me the most–chemotherapy.
As a nurse, again I knew how chemotherapy worked and all its side effects. At work and in the community, I had seen people receiving chemotherapy at their worst – alopecia, weight loss, weakness, pallor, diarrhea, vomiting, cachexia, and many other unpleasant effects that could tell you at a glance that this person had cancer. I had no choice but to get ready, and to hope it was not going to be that bad knowing that cancer treatments had improved, side effects were lessened, and it could be prevented by medication. In my graduate school thesis, the psychological impacts of cancer on nurses were discussed. In this part of the literature review, I wrote, “during this time, the nurse as patient being medically knowledgeable of the processes and outcomes of a disease and illness is placed in an estranged, difficult, and confusing situation”. A form of distress called “insider vulnerability” is experienced by nurses with cancer due to their extensive understanding of the illness and treatment as compared to that of most patients.
The day came for me to have my first dose of chemotherapy. I remember how terrified and scared I was, I did not know what to feel and to expect. I cried so hard while taking a bath and getting dressed. The chemotherapy was done as an outpatient procedure in a “chemo room” along with other patients. The sight of bald, emaciated, pale, and thin cancer patients seated in their own chemo chairs combined with the stink of chemo meds and disinfectants made me run to the restroom and throw up. My heart was pounding hard inside me as my whole being resisted that sooner or later I will be like them. A nurse came and introduced herself, and oriented me with the setup and gave instructions. After the routine taking of vital signs, checking my health history, and reviewing my most recent lab results and doctor's orders, the nurse came back in a few minutes with a tray of IV fluids and medications. The chemotherapy infusion started smoothly. I watched as I saw the “red devil” infused into me. I was still in denial. Even with knowing the histopathology report of having an invasive ductal carcinoma stage 2A, the scar on my right breast, and having my first dose of chemotherapy, the horror of having breast cancer still had not completely sunk in yet. I felt I was not affected, maybe not yet.
Being a nurse, I had used my “insider knowledge” to find information and ideas I wanted to know about cancer in general. I remember a post shared with me on my Facebook timeline about the “anatomy of a nurse” which describes nurses as having a “mind that is always assessing” and I said Yes, absolutely correct. Nurses are very intelligent people. We can do our own “case analysis” and come up with what could be our possible diagnosis before our attending MD could tell us. After my first dose of chemotherapy, I used this exceptional ability of a nurse to at least help myself alleviate all the worries and fears by searching the available ways and means that I can do for the many side effects that soon would manifest in me. In my years of practice as a nurse, I had patients with cancer who came to the hospital for their first dose of chemo with all their complete hair, healthy looks, and color, overflowing with hope. But, the next time they were admitted, I could hardly recognize them. In the patient's bed was a bald, pale, sick-looking person, with a silent and blank face that seemed to overridden with fear and uncertainty. As a nurse, one can easily conclude that cancer and the effects of chemotherapy had taken its toll on this person.
Being the cancer patient myself this time, I wondered what, when, and how these unpleasant side effects would happen, spanning from the 1st day of chemotherapy to the 1st day of feeling the first side effect. I made myself so keen in observing what would happen to my own self after my first chemotherapy and tried to keep a diary. I felt the headache and nausea right away as I leave the chemotherapy room, but could easily be relieved by oral medications prescribed by my oncologist. A few days after, my sense of taste, smell, and hearing became very sensitive, I became irritable, and I did not like noise, but I felt that these side effects were manageable and not all that bad. There is a lot of “nursing care” that I learned and searched for to manage the discomforts, and I applied such care to myself. For nausea, I had ice chips, candies, and desserts, if the water or other drinks tasted like metal, I use a straw to drink them, if the food on the table did not fit my taste, I would go to the supermarket and pick what food was appealing to me. If my children were playing noisily, I would stay in my room, listen to my favorite music, read a book, sleep, or go out to see my flowering ornaments. I felt that perhaps at my age, my immune system and will power were stronger and that was the reason why I could stand out among other cancer patients. Or could it be that my being a nurse was empowering me, or I was still in denial that having breast cancer and this first dose of chemotherapy was only like recovering from a bout of flu.
In the 1st week after my first chemotherapy, the side effects were all very minor and manageable. I tried to pull my hair everyday in the bathroom, but there was no sign of hair falling out yet. I knew perfectly well that my chemotherapy drug combination could make me bald, but I still hoped against hope and wished for a miracle that maybe my hair was so strong it would get thin but would not fall at all. However, on the 10th day, I started noticing some hair fall on the bathroom floor, on my bed and pillows, in my plate, and in the food I cooked. The hair fall got worse and started coming out in clumps. I went to a mall's department store to shop for bandanas, bonnets, and caps to cover my hair in case I needed to. There were days when I did not want to shampoo my hair just to preserve it longer, but alopecia was inevitable. One evening, I finally decided that it was time to shave my head rather than see my hair falling everywhere. With my children, we went to my hairdresser friend who could not believe I wanted to shave my head. He said I should stop joking as he has several clients waiting on queue, refused to do it until I told him the reason why. I put on my prettiest bandana as soon as the shaving was done and mused to myself that it looked nice, and my children told me it was “cool.”
I felt a sense of ease, security, and optimism despite the discomforts caused by the side effects of chemotherapy, managed by credible doctors, being in the comfort of my own home and family, and being a nurse who is knowledgeable about my own illness. However, this feeling did not last like I hoped it would throughout my illness. Bald after my head shave, I felt the blow of cancer painfully hitting my whole being now. As I took a shower after the shave, I caught my body's reflection in the mirror–bald, pale, thinner, and my eyes were sunken, with inches of dark scar in my right breast. I looked at myself in the mirror and saw a stranger, a different person standing in front of me. I cried my heart out for hours in pity looking at the frightful sight that cancer had made of me. For the first time since my cancer diagnosis, I felt the pain, misery, and the truth of being a nurse afflicted with cancer was now a reality.
Despite the progress in science, technology, and medical treatments used to combat the disease, the stigma of cancer remains strong and devastating. When people hear the word cancer, it implies suffering and severe pain, a picture of an altered body image due to surgical interventions, hair and weight loss, other complications, or eventual death. A wide range of crises such as fear, anxiety, uncertainty in the outcome of intervention and treatment as well as financial issues and losses affect the person with cancer. For nurses who are used to being the providers of care, the effects of cancer and treatments such as the discomfort, fatigue, and other visible side effects of the treatment process will prompt them to withdraw or stop from keeping up with personal and professional responsibilities and other important roles. The feeling of being incapable of performing expected roles and functions contributes to decreased self-esteem. On the brighter side, however, the illness-linked experiences can herald the start of positive life changes. Rather being a personal and negative event, the nurse can use the illness experience to reflect and enrich her own life experience. The positive meaning gained from the experience can allow the individual or the nurse as a patient to develop ways, resources, and resiliency to cope and live with the multiple losses and uncertainty associated with the illness.
With God's grace and for the love of my family and friends, I went back to my usual norms after surgery, completion of my chemotherapy treatment, and a short vacation in my hometown. Once back on my feet, I worked full time again as a mother and as a nurse. Then, during one of my follow-up checkups, I became the happiest person on earth when my oncologist and surgeon gave me the green signal by saying, “Yes, of course you can,” allowing me to enroll again in the graduate school. For the first time after a year and a half of locking in my drawer and computer those first three chapters of my thesis, I opened and read them once again. Each word and paragraph in every chapter was like a stab in my chest, crushing my heart. I was struck by the pain of thoughts and questions about how deserving I was to be exactly in the very same spot, in the same situation as the nurses with cancer who were the respondents of my research study.
For a while I considered changing my research entirely, but perhaps what people had said was true, I was placed in the same ordeal in order to truly live and understand it, thus giving me the most appropriate justification for writing about the lived experiences of nurses with cancer. Slowly, no matter how painful it was, I took and accepted the challenge, praying that this endeavor would lead me to the acceptance and healing of my own wounds and help me move on. After a year, I successfully finished my thesis entitled, “The Journey of Nurses with Cancer,” finally achieving my almost impossible dream of obtaining a master's degree.
Today, thousands of nurses and other health-care professionals are living with cancer and other chronic illnesses. The journey itself can be so tough, difficult, and painful that sometimes the tasks of living and adapting to the effects of the illness require defenses and coping strategies, both as a nurse and a patient. On this road of illness, people sometimes get derailed, and the destination is uncertain and shrouded. Although some may consider the experience of illness experience a test of faith or just a mere blip on a screen, overcoming the profound effects and living with this disease is a difficult challenge. Along the way, some will completely recover, others will not, and many will live with the chronicity of the illness for the rest of their lives. Ultimately, like the journey of an ordinary person with cancer, the nurse will adjust to the changes and new roles and respond to what is called for by the new situation. The person, whether a nurse or not, is required to cope, adapt, and develop resiliency to thrive, live successfully with the illness, and become a survivor.
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Conflicts of interest
There are no conflicts of interest.
| References|| |
Vachon M. Psychosocial distress and coping after cancer treatment: How clinicians can assess distress and which interventions are appropriate, what we know and what we don't. Am J Nurs 2006;106(3 Suppl):26-31.
| Authors|| |
Neila Salamanca Mapi