By Dr Archana Ojha*
This is one more story of a cancer survivor. On World Cancer Day, I would like to share a critical perspective, to understand the relationship between my experience of fighting cancer, seeking appropriate medical procedure and my shifting position in the social structure of the society that I live in. More than any other factor in my life this illness and its ramifications has made me realise that as a patient I experienced not only institutional inequality, gender bias but also gradual decline in my social position. In this journey of illness, the experience of shock, extreme pain during the treatment later gave way to self-awareness.
Cancer as I believe brought both pain and self-awareness in my life. I never thought I would one day be looking at this illness from an academic point of view and I want to tell my readers that those who survive, for them it is the beginning of new life. The disease and its long treatments made me realize that I have to live one day at a time and don’t have many alternatives.
I was diagnosed with breast cancer at the age of 46 when I was climbing the ladder of success and for the first time in my life, I was gradually becoming financially secure and probably happy. Life had always been tough for me and whatever I have achieved it is with great difficulty and by surmounting numerous problems.
I sometimes wonder how was it possible that I could not understand the commands of my own body which was telling me how stressed out and overworked my body was? I had decided long back that I wanted to be a career woman and found my calling in research and higher education in the discipline of History after dreaming of becoming a great sportsperson as I was Delhi State Champion in High Jump to a painter when I received prize at Shanker’s International Painting competition. My parents were opposed to my higher studies as it entailed long years of struggle but I was firm that this was my calling in life. Once the decision was made, I soon realized that while higher studies assist in broadening your intellectual horizons but does not provide you with decent life conditions. In the meantime, I lost my father and in quick succession I was married and divorced within a short span of time. From the perspective of political economy, losing father early in life meant economic downswing and further compounded by years of struggle to get a job in Delhi University and the fact that I had strength to end the marriage before it could wreck my life meant that I was constantly under stress while facing social inequality that also had direct bearing on my health.
I chose to ignore the norms of society and immersed myself in research and did my doctorate. I secured many national and international fellowships including University Grant Commissions’ Minor Research, Shastri-Indo Canadian Doctoral and Fulbright fellowships. I was beginning to be recognized both at national and international levels and at least my professional life was looking up.
Then I discovered a lump in my right breast. For some reason, I knew it was cancerous. My mother had benign lump in her left breast at the age of 82 and I was in high-risk category due to my age and being childless. Fine needle tests confirmed what I already suspected and thus began my long journey of treatment, hospital visitations and rounds of chemotherapy followed by radiation. My operation took place at a private hospital but the phenomenal expenditure involved to save my life forced me to shift from private to government hospital and now AIIMS has become my second home. In the process, I also began to realize that the economic cost of my illness was gradually making me go almost bankrupt.
I opted for radical mastectomy and I have to admit here that in an increasingly commercialized world where image of body and self-have become commoditized, I too was not immune to loss of an organ associated with my gender and sexuality. I distinctly remember going through various stages of grief, frustration, agitation and then acceptance. Initially I went through the period of grief asking questions to God, why me? Haven’t I suffered enough and never got answers. People asked me how come I did not detect this lump earlier; they questioned my lifestyle and some blamed my single status. Then there were those who started patronising me what to eat, which God to pray to, to stay away from people, to stop teaching without ever asking me how I would afford this expensive treatment if I stopped working? All these human emotions and questions crowded my mind and generated more agitation and grief. I gradually began to realize that when life threatening disease occurs in one’s life then the set social life of that individual gets completely disturbed. I also realized that I was gradually becoming dysfunctional for people around me and was getting isolated.
This was followed by period of complete silence and gradual acceptance of this disease and my gradual disassociation with people who told me that in case I require their assistance I should call them but they never visited me even once. I became an outsider to the extent that a colleague of mine told me not to inform others about my disease as I would become a social outcaste.
I had very little control over the process of medical treatment and when I was being wheeled into the operation theatre, I prayed to God to give me death. But that wish was not granted. I was well aware of the fact that the severity of my illness made the possibility of full recovery not only remote, a mirage but also a very complex process which I had to constantly comprehend throughout my treatment.
I thought post operation pain was enough. Imagine yourself lying in ICU and aware that some patients around you are dying and their bodies are being taken out. I wanted to scream take me out of this hell but neither my brain nor my body was obeying my orders. There were times when I thought I am dead and the pain that was shooting through my body was the process of leaving this world. Strange, I would have welcomed death than to endure the pain that I was going through! Post operation pain is not hell if you have not experienced what chemotherapy can do to your body. How do I describe it in words, it is like billions of ants injected into your system at one go and they are craving to bite you? My first few cycles of chemotherapy were as dreadful. I experienced almost all the side effects. Everything started smelling like a chemo drug. I remember my friends urging me to have a teaspoon of glucose to survive and sitting on my bed patiently to coax me to eat or help me to run to bathroom or just give me massage to calm me down. I began to lose hair by second round of chemotherapy and this made me march to the barber’s shop and get my head shaved. I walked out bald! I was now in the words of a friend an enlightened Buddha!
I had to be shifted onto a new chemotherapy drug which was expensive but with fewer side effects. I was given three cycles of this new therapy, each cycle consisted of three rounds of chemotherapy. Radiation was a simple procedure and only scarred my skin but by then I was already a different person. I never bought a wig, nor did I try to hide from the world what I was going through. During chemo sessions, I would either be correcting answer scripts of my college students or filling numerous medical reimbursement forms and later submitting them. I would drive myself to the hospital and then back home to support my brother busy looking after my mother who due to old age had to be hospitalized quite frequently.
Before cancer, I was branded as single, divorced and an outspoken person and now I was a cancer patient. At this juncture I began to observe the reactions of my surroundings to my illness and finding expected and some shocking variations. There were so called friends and relatives who would enquire after my wellbeing on email but never called up. Some friendships just ended as they never thought I would survive this illness or worse may ask for financial assistance and what if I die without repaying them? The Income Tax Department sent me notice questioning the movement of large amounts of money to and from my bank account way beyond my income levels! Then there were friends who just put money under my pillow and till date I don’t know who kept that money. Real angels come in this form. How did I react to these extreme emotions and behaviour? Initially I went into shell which was the easiest thing to do anyway but gradually I begin to realize that this disease has given me window to understand myself and the world around me.
The financial costs of treatment were monumental. I was buying medicines in lakhs of rupees, way beyond my income at the time I was also paying a home loan. So, between my sickness and financial situation the only recourse left for me was to take minimum leave and get full salary. Therefore, I took leave only for three days when administered chemo. I forced my body and mind to obey my commands and would march into the classroom to teach after sessions which later proved to be therapeutic in my recovery. I also had to continue with my domestic responsibilities, looking after my sick mother; taking her to hospitals umpteen times. Doctors treating me were also against taking long medical leave as they never wanted my physical form to affect my mental health. One said, ‘work to keep focus away from cancer, if you survive there is another new beautiful life waiting for you.’ At that time, I found his words funny as during those months of treatment I could barely see life beyond a day let alone in future!
Beyond treatment, I began to deconstruct my illness and, in the process, understand my own self and need to maintain balance in adverse circumstances. I devoted myself to studies and continued teaching. I used to run all the errands, go and buy my own medicines, go for long walks, talk to trees, birds and dogs in my college and tried my best to save my mother. However, her health began to deteriorate and she succumbed to old age. It was indeed a very difficult period for me, I was undergoing radiation treatment at that time and I remember my friends taking me for radiation session even the day my mother’s body was cremated. Friends who took me to hospital had only one thing to say, ‘life has to go on’.
What have I gained from my long treatment? It does not matter who supports or abandons you. What matters is how you are going to face the world. I accepted my illness and thought to myself that God wanted me to become a better person in the process. I no longer get involved in unnecessary arguments, ego … I try to keep it at a distance, and I have become more silent and a bit withdrawn from the world. I do work at my own pace, continue to follow my spiritual world, teaching, walking and enjoying nature.
I learnt that I have to be gentle to myself and use humour in difficult times. I should not allow crisis to rule my life. I have begun to live in the present moment and not in past or future. I now firmly believe in the power of healing based on being honest with myself and others. I have learned to respect myself and be more focussed.
Cancer has offered me the opportunity to reflect on those who supported me so much and am grateful for their gift of giving. I think I am emerging as more humane person as I accept and integrate all that I have been and all that has happened in my life. I have also understood that suffering is part of living life and death should not be taken as an escape but as a source of life energy. As someone has rightly said that ‘living is a gift of wonder’ and one should live every moment peacefully and share it with others.
*The author is a cancer survivor. She is an Associate Professor at Kamala Nehru College under University of Delhi. She can be reached through e-mail at [email protected]
DISCLAIMER: The views expressed in the article are solely those of the author and do not in any way represent the views of Sambad English.