Rama Sivaram, a 20 year breast cancer survivor, patient navigator and an Independent Cancer Advocate reflects on her own tryst with breast cancer, and 20 years of survivorship and how it has shaped her perspective in life.
Flashback 2004- A sense of well-being and fulfilment engulfed me not because of any dramatic moment because I am made that way and enjoy my small moments. I am a reasonable extrovert and warm person, romantic dreamer and possibly a little dumb too. I was my daddy’s pampered little girl, naughty and outspoken maverick and spanked by my mother routinely which was normal then. Pain only touched me briefly, 25 years ago during my delivery, when both my infant and I rose from a brief dark period of uncertainty and got a lease of life. Along with my son, I continued to keep the curious and vivacious child alive in me.
The year too was replete with landmark moments like the My Doom virus, big I LOVE YOU worm disrupting the net and emails, launching of Facebook, summer Olympics in Greece, death of great people in science and arts, a new prime minister and more important than all - a sinister lump that eclipsed all else. While humming a tune, flattering myself in front of the mirror getting dressed for a big girls’ party, I chanced to touch myself and felt this ominous thing and knew I was engulfed by the claws of the crab. Each claw in its own time tried to take a little bit of me away from myself, away from the child and woman within. I felt like a poor calf being taken to a slaughter house never knowing why and the cruel farmer goadingly asking it to look at the swallow winging swiftly through the sky.
"Stop complaining!" said the farmer, "Who told you a calf to be? Why don't you have wings to fly with, Like the swallow so proud and free?"……. (Sung by Joan Baez, lyrics Aaron Zeitlin and Sholom Secunda)
If I did not attempt to free myself no one else could. I told myself , it is a disease which had to be removed from my body because of which I am partially mutilated. A part of my body may be gone but not me the person. Could I let my fragmented thoughts further mutilate myself, my being. No, I didn’t want to self -mutilate within. As Rumi the Persian poet, writes “You were born with wings why prefer to crawl through life.” ( I am going to be quoting Rumi throughout, who I enjoyed despite the translation.)
My lesson for life was if I wanted to live I must not simply appreciate a life, but must break out of disabling thoughts and be like the swallow, “…….But whoever treasures freedom, like the swallow has learned to fly.’ (Sung Joan Baez, lyrics Aaron Zeitlin and Sholom Secunda)
My connection and space in the cancer world- I am more familiar with cancer than many others and my flight towards freedom though fraught with my mind games was easier. My cancer lineage on both parental sides goes beyond two generations. I was familiar with good and bad outcomes. I am also a professional in health care, the hospital was and is still a second home and patients are like extended family to me. I had taken additional responsibility of helping set up an outreach for advocacy, counselling and support group for cancer patients. Learning about cancer first hand, teaching and practicing breast self-exam enabled me to detect my own breast cancer on a sultry summer night. I am still very breast proud, then flawless but now carrying its own scarred scarlet letter C, a reminder of being twice born. Within a week, I became a patient from being a professional caregiver. Cancer was my tutor and I became a student of my body and mind - the free university teaching me, helping me explore myself, my perceptions, my feelings and emotions and the myths and truism surrounding cancer, me and the world. What subjects did this university offer by subjecting me to the expected- unexpected, known- unknown, hope -despair, fight and flight response?
Affirmations are good but life is like a Pandora’s box- First the evils like disease, death and despair fly out when the first woman in Greek mythology Pandora, opened it and when she shut it hurriedly, hope remained within. There are many interpretations, and hope could be both deception and expectation / wish. I realized that when all is well we take ourselves, our life, relationships etc for granted but when an adversity flies out, we are not fully prepared to confront it. It is okay. We are trained to say good things, keep good affirmations, for fear of evil that may touch us if we spoke or thought about it. Survival is a basic instinct but we seek to deny or blank out. On this unwanted journey of physical pain, fear of the unknown, and emotional roller coaster, our coping skills are put to test. Cancer being part of my heredity made me mindfully accept the possibility of it happening, secondly being a health care professional and immersed in learning and giving patient care and lastly, the patients themselves played the biggest teaching roles though their own angst, pain and disposition, in which feeling well and wanting to be well and go about their normal life was the spark of hope in moments of despair. We are careful not to utter the word death which is perhaps slowly eating up in the subconscious minds. I hear voices, “when will treatment end, when can I go home feeling well? I want to be well.” Did getting well simply mean recovery from disease, being cancer free? I recall a poem by Robert Browning of a young girl Pippa Passes, which normalizes an otherwise dark period “The hill-side's dew-pearled- The lark's on the wing-The snail's on the thorn: God's in his heaven—All's right with the world!”. We suddenly become thankful to the otherwise taken for granted daily living and crave it.
Empathy made me one woman too many, when it was my turn on this cancer journey, I could feel some of the pain and angst of all the women with breast cancer I was closely caring for; at that moment the child in me hid behind the woman in me. Journeying through cancer and survivorship is never ending- it is a new halt or new station or a detour, with its bumps and humps where we either perish in our woes and worries or discover/ rediscover ou rselves. A small couplet by Kabir I learnt in school came to mind, “चिंता ऐसी डाकिनी, काटि करेजा खाए।वैद्य बिचारा क्या करे, कहां तक दवा खवाय॥ When worry is such a demoness who devours her own heart, then what can the poor doctor do and how long will consuming medicine work?” I have always said of all the treatments, chemotherapy is the longest and most assaulting, so much so it is catharsis by protocol. A long and slow chemo protocol was both a physical and emotional/mental purgatory for me. My mind and voice were in conflict, there seemed to be so many me’s, my multiple selves. There were so many mixed voices, loaded sentences, ready to fight and flight positions I was taking. Kabir says, “But if a mirror ever makes you sad, you should know that it does not know you.”
There are many me, my multiple selves that surfaced in Rumi’s words, “Do not be satisfied with the stories that come before you. Unfold your myth.” Cancer and uncertainty knocked on my subconscious and met my subdued and hidden feelings, thoughts and beliefs upfront from my multiple selves and it can be scary. The child, the woman, the fighter, defender, my authentic real self and ideal self, my adapted self and my performing self, public self all of them reacting and responding to the cancer experience. Sometimes, when you don’t know something, it is easier to live with yourself, and if you do know, you have to unfold your myth. I befriended them all because I had not really acknowledged them, and I was not sure how exactly I could deal with them and integrate my different selves in harmony. But I knew it mattered for my whole person wellness. Most of us are creatures of comfort and change is scary. We also know if we don’t change we would be stuck in the same place, in apparent safety, avoiding challenges. We forget change is good and augurs growth in our personal selves with every new milestone in life. I was intellectually and professionally up to date, but what we learn in text books is only an overview. In my instinct to survive somewhere the innocence of the child and experience of the woman, nature and nurture broke out of a self-made silo lighting an emotional spark of a child’s faith and an adult’s resilience and awareness came, as Rumi says, “momentary awareness comes as an unexpected visitor.” Talking to my workaholic and busy scientist husband, he is as left brained as I am right brained (opposites attract, but there are fireworks too) my first love Literature, reading, writing, poetry, listening to patient stories, recalling my own counselling, education and soft skills programs I still conduct came in handy to look at myself, my space and place in different aspects of my life with some detachment and objectivity. I could eventually reflect on my life mindfully, which otherwise involved all and sundry and rigors of day to day living.
Little worlds of despair, hope and circumstance- Between eating mangoes, caramel custard and sweets, struggling with painful oral mucositis, purging, vomiting and frustration I had enough time on my hands to experience nadir - lowest point of blood cell counts during a chemotherapy when I would become emotionally very weak due to side effects and then emotionally strong during the recovery phase before the next cycle hit me. It’s like from despair to hope and I was feeling well both physically and mentally. I recalled bits and pieces of significant information and emotions of all cancer patients I had cared for. Given their own little world and circumstance they too swung between hope and despair praying to get well and move on, with moments of bargaining with themselves, fate and Gods. 25 years back, mobile phones, the internet and other forms of communication did not reach every woman. While experiencing, sharing some and not sharing some, their deep subconscious angst had limited avenues of support – from family and religion. Believing cancer is a taboo, it remained and still remains a covert or hidden subject. While both family support and religion are a very important succour, the family as a supportive entity also bore the pain and burdens of caregiving. To be cancer free and be well enough was the primary goal.
Wellness in the New Normal- What is my wellness? Yes, we are all equal in our pain and fear. My primary goal was and is to be cancer free. But, the little niggling feeling behind my partially removed breast was apprehensive of living beyond my cancer into survivorship. This was about the new me, that is known as the New Normal. What the New Normal meant to me was change and change can be scary. Being luckier than some of my other cancer sisterhood, I had access to not only clinical services but all other support systems. Wellness, to me took a different meaning with greater scope- a wellness about optimal living with quality of life. I had enough time to review every silo and collective aspects of my life- moments of angst, anger, agony, love, friendships, pain and pleasure etc . I had met many women who had a better deal in life and just as many who were bitter, repressing and supressing their anger. It is so apt when the writer poet Maya Angelou says, “Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.” The more some of these women held on to bitterness and inner anger, they suffered more than the physical side effects. Those who were more vocal and expressed their anger possibly went through a transformative cleansing – they felt relieved and released. Ask me and I will tell you, I had the choicest curses, arguments, free for all fights- first target husband, then mom, until they muttered, “She is so strong willed, she will finish us before she completes treatment.”
There is a wellness in every dimension of our lives and I needed to do equal justice to all of them and practice them for my whole person wellness. Wellness is not simply beating cancer; it is about me, the whole person in harmony. I know it is possible, my husband is the classic example of attachment with detachment, he is the Buddha and I am the Alice. I know I did not mindfully put to practice the dimensions while busy running a rat race, and worried who would steal my cheese. My own soft skill workshops on wellness for others came home to roost. “Wellness is an active process through which people become aware of, and make choices toward, a more successful existence.” The National Institute of Wellness consensus is that it is conscious, self-directed and continuously evolving process towards our full potential. It is multidimensional and holistic, mental and spiritual well-being in the ecosystem. This continuously evolving process mirrors our changing needs and actions to take in setting priorities to achieve this state of well- being by balancing every area or dimension of our life. While I explored my eight dimensions of physical, mental/emotional, spiritual, social, environmental, financial, occupational and intellectual wellnesses, I realized that physical, mental/emotional, occupational dimensions required critical attention and always do because of my being right brained and a basic X type mixed personality. Being a water sign, Piscean I am also emotionally inspired, intuitive, dreamy, romantic, creative, empathetic both compassionate and honest; I attract friends and foes alike.
Caring for my physical dimension has over the years taken priority, if I inherited cancer, the treatment gave me side effects, like lymphedema, emphysema and now manageable COPD and cardio toxicity. While some things are in our hand and some not, I am particular about follow up care. I have minimal medication, and manage chronic pain without medication as far as possible. Pain being a construct entirely in the brain, I use both my mental and spiritual self to minimize and deal with it. I have understood my pain pattern and have become more sensitive to my body signals. I listen to my body more mindfully without being paranoid.
Working and changing my script in my mental and emotional connect I realized is more complex than dealing with the physical and more easily said than done. My multiple selves and my relationships, the dynamics and many layers of communication, what we hear and what we interpret, our learnt beliefs about the self and given identity, the gap between the real me and the ideal me was like disturbing the hornet’s nest. My intelligent cognitive self could process events, actions, words and thoughts rationally and with different perspectives, but when it came to the accompanying emotional there were fireworks and tsunami. Some were partly coming from the deep psyche -the conscious and subconscious, some from my interpersonal and professional relationships but never self versus self. The new script is more tempered down to regulate my higher emotional persona with respect to the earlier ambition, hurt, attachment, validation, expectations in all aspects of my life. All these concerns our different selves in professional and personal life. To commit, care and love for the core self, my patients and significant others is a reward in itself. I asked myself why? Simply, it gives me joy and peace, even though these are whole packages which come with joy and pain. We can’t remain unconscious of the soul – or deepest self and imprison it, we must let go to let it fly. We need to constantly try and regulate our emotions to be prepared to cope with what life bring our way without letting it put us in shackles. I won some and lost some.
Understanding and dealing with adequacy and deficits in occupation and profession and me helped me. The high and low phases in my career are partly due to good and poor leadership, trust, respect and appreciation issues and my own personality traits. I had very supportive leader mentors who have helped me become well rounded and gave me opportunities to grow professionally, there was also an angry boss who harassed, but did not side line or take away my work from me. They became more demanding and stressed me out, but I came back with flawless work with a vengeance at the expense of my physical and mental health. But the opportunities I got far exceeded the stress and only the ego hurt. Rumi says, “If you are irritated by every rub, how will the mirror be polished?” But then I am not a wise Sufi, with every rub the mirror was poised to crack. What I recognize is a hurt ego is easier to deal with, but a deep emotional hurt that comes of having been used and where there is a doubt about trust, respect and appreciation. Again this is about interpersonal and professional relationships where being frank, honest and voicing an opinion is not okay with certain personality types. Be it a leader or mentee, Rumi’s homily is apt, “Dear soul, don’t set a high value on someone before they deserve it; You either lose them or ruin yourself.” I almost ruined my health with crowding negativity. But circumstance and the little wisdom I have told me, “Do not try to explain. They will only understand you as much as they see and hear.”
One of my major decisions was to limit my professional associations and volunteer for the rest. I am for those who repose their trust and respect me and my work. I maintain friendly professional distance, work with more people with same and different skills who nurture every employee the same minus the blue eye syndrome and freebies. It is the principle that matters. I recognized I am not for leadership positions and am a true mentor and I am happiest educating and caring for breast cancer patients, survivors and other people living with cancer and hand holding them through their difficult times. I love to teach and demonstrate lymphedema management, conduct a course on medical information module with little poetry and music thrown in, create public awareness and write , write and write. "What you seek is also seeking you. Don't grieve. Anything you lose comes round in another form," - Rumi feels just right.
My social and financial dimensions are enough, while I connect with greater intimacy with those who share the same mindset, culture, religion and wave length, who believe in taking the best from life, and are not parochial. In casual relationships with friends and acquaintances with whom I don’t share my deeper feelings or express opinions I am just warm and socially pleasant. My financial dimension is good enough for me and my husband and just enough to share some as a part of giving back.
Spiritual growth is culmination of fulfilled Maslowian needs and I am moving towards self-actualization, which is a continuous process where a new myth unfolds itself for me and I meet my core needs and am doing what gives me most satisfaction- to be myself, authentic self and a complete person. I choose to act and live my life aligned with my values and purpose. I am alive and doing reasonably well!
As I watch the rain and storm, or the eyes of an innocent infant, or the unconditional love and faith in my dog’s eyes, as I hear bird call, the unalloyed joy of a child in every day miracles of life or the cry of an adult in pain there is a lesson to take, it is a beautiful world and beautiful life, in spite of it all. This line by Rumi touches my soul “The wound is the place where love enters you-The wound is the place where the Light enters you.” I have, as much as I can, accepted my wounds -who inflicted them no longer matters, and trying to “be like a tree and the dead leaves drop,” living well in my new evolving landscape.
Acknowledgement: Rumi sources net.
About Rama Sivaram
Rama is a 20 year breast cancer survivor and an Independent Cancer Advocate, trained Educational Psychologist, health educator-counsellor, massage therapist and certified master trainer in counselling and health communication. She is presently an independent Consultant, Sr. Consultant in KEM Hospital Research Centre and Faculty and patient navigator at Sanjeevani Life beyond Cancer with a pan Indian outreach. She has long standing experience in women’s and adolescent health initiatives, gender, reproductive health and sexuality and her own tryst with breast cancer has enabled her to learn skills better with a patient perspective from Oncology mentors and conference workshops and courses across the globe and most of all the patient mentors - men and women whose journey through cancer has guided her into a focussed educational psychology approach with tangible and intangible takeaways for survivors, those in treatment and those living in palliation facing end of life issues, towards an optimal life of well-being and nurturing self-care. To Rama cancer care is all about a vocation -her commitment and mission to do what little she can for patients and caregivers.
