One step at a time: The story of a cancer survivor
– Ramalakshmi V., Stella Matthew, Aneka Paul, Chennai
Sarita (name changed) is a very smart and young girl, who lives with her mother and older sister. Her mother became the sole breadwinner of the family after she was deserted by her husband. One fine day Sarita noticed rashes on her skin. Her mother decided to take her to a doctor and get her treated for the same. During their visit to the hospital they learnt of a free health check camp that was being organized at the hospital the very same day. Sarita and her mother registered themselves for the general health check up. The report which followed proved to be a nightmare as it frightened her whole family. A lump was detected in Sarita’s ovary. She was immediately hospitalized for further investigations and was finally diagnosed with ovarian cancer at the age of 12.
The first few weeks of hospitalization were a blur painted with fear and confusion for the family. Young Sarita began to lose her hair as the treatment progressed. Her pain now needed to be managed with medication. Her mother and sister were given diagnostic and therapeutic counseling by the counselors at Golden Butterflies Children’s Palliative Care Foundation (GB). These sessions helped her mother to gather courage and gain confidence to continue supporting Sarita in any way that she needed during the course of her therapy. As unfortunate as it may be, Sarita and her family had to wade through and fend for themselves during these turbulent times, as their extended family offered no support.
The loss of hair and changes in her body image dented Sarita’s self esteem to such an extent that she began isolating herself and avoided interacting and socializing with people. The GB Counselor involved Sarita in Cognitive Behavioral Therapy, to reinforce positive thoughts, challenge unfounded beliefs that she had conjured up about herself and to guide her towards developing a healthier body image. The GB counsellor also engaged Sarita in Art therapy to minimize the negative impact of the illness and hospitalization that had eclipsed her. Gradually, Sarita began to express her emotions and got actively involved in her art and play activities.
The early detection of cancer allowed Sarita to receive timely and appropriate treatment: surgery, chemotherapy and radiation. Sarita’s resilience manifested in her being free of cancer for the past year, and now at the age of 14, enjoys the prospect of a full and exciting life ahead of her. Sarita is also elated that her thick, black curly hair is growing back day by day. Bearing witness to Sarita’s emotional turmoil when she lost her hair, motivated Sarita’s mother to donate her own hair to make wigs for other cancer patients.
The nation wide lockdown’s imposed due to the COVID 19 pandemic restricted Sarita’s mother’s earning capacity and therefore added another layer of challenges for Sarita’s mother to maneuver. GB extended support to the family by providing monthly groceries, hygiene kits, arranging for and covering their transportation from their home to the hospital and back.
Despite the limitations that the pandemic created for us, we continued to uplift her spirits and assured her mother that Sarita would continue to smile. We understand that her face lit up each month when she received the ‘GB Magic Envelope’ that was couriered to ‘her name’. The edu-tainment kit or the A4 sized treasure that she received was aimed to engage her creatively as it consisted of a theme-based craft activity (along with all the required raw materials and color pictorial instruction sheet), colouring sheets, and a tiny gift.
About the authors: Ramalakshmi V is the Project Manager, Stella Matthew is the Managing Trustee and Aneka Paul is a Trustee at Golden Butterflies Children’s Palliative Care Foundation. GB is a not-for-profit, public charitable trust registered in February 2018 in Chennai, dedicated to serving the needs of underprivileged children suffering from chronic, advanced or incurable diseases, and their families. Please visit www.goldenbutterflies.in to know more about us.
A story of Resilience
– Mr. Param, Bengaluru
In 2004, I was progressing in my career at a multinational company. I had no symptoms, but since I work in pharmaceuticals, I had to have an annual medical checkup. During one of these routine checks, we noticed that my white blood cell count was exceptionally high. I was in the middle ofdelivering a presentation to my company’s stakeholders, when I received a call from the company doctor, informing me that I had chronic myeloid leukemia (CML).
My mind didn’t have cancer, my soul didn’t have cancer; my blood did. I had a family to look after—two young daughters—and I needed to be there for them. I didn’t lose hope or faith, never asked “Why me?”. I never sulked. I believed that Life is beautiful and that every setback lead to a stepping stone.
My wife was however shattered by the news; The algorithm in her brain told her that blood cancer leads to death, and that I would probably die. It was a tough night, but the next morning she said, “We are going to fight this together”; and the journey started.
I was lucky that it was CML.My doctors told me that there was a medicine available, whichwas effective for 95-98% of the patients and thatit provided a good quality of life for the almost 20 years, that it had been around. It was like taking a pill to control diabetes. I understood that it acted on my melatonin, and that I would become fair skinned, and that it had no other side effects.
I started taking it and life was good. I felt inspired to advocate for others. I became a staunch volunteer with The Max Foundation, an organization that supports people with CML.
My career actually accelerated after my diagnosis. I adopted a very disciplined approach to my cancer; taking medication as instructed, going for monthly testing and for regular molecular tests. I was also nominated for a University program in the UK and went there for six months. While I was there, I continued to get tested. My hemoglobin levels began heading south and I was therefore becoming tired. A doctor there suggested that I take iron supplements as this could potentially be the result of a side effect from the chemotherapy.
I returned to Bangalore in the fall of 2006 and did the blood test again with my regular doctor. The results indicated that my CML had progressed from a chronic to an accelerated stage. It was still manageable, but I worried about it further progressing towards the blast stage, at which point it becomes acute. Further tests revealed that it had indeed progressed to the blast stage. Three to five percent of patients develop resistance to the Glivec chemotherapy and I was one of them. I was devastated, “What next?” I thought.
My medical team offered to put me on some ‘new’ medication, to try and reverse its progression and get me back to the chronic stage, but it would cost $1 million a year. The alternative treatment was a bone marrow transplant. My brother was a 100% match, so we decided to go ahead with that.
The Seed of Growth
It wasn’t easy; they hit you with a high dose of chemo to wipe out the immune system, which can lead to death. I thanked my cells for taking care of me for 35 years. Photos of my family adorned the walls of my room, while I mindfully focused on life. When my brother’s bone marrow came, I said thank you and told his cells to get to work. His bone marrow took over me within just 15 days. The strangest thing was that my blood type changed to his blood type. My B negative blood group changed to B positive blood group after the bone marrow transplant.
I was in the hospital for over a month and out of work for three. I never feared for life; I always had hope. I have always been resilient; it’s part of my upbringing. Adversity is the seed for many things, and now it’s like nothing ever happened. I’m off all medication and my molecular test for CML shows zero. My doctor tells me that I am like any other healthy person now. Anyway, I therefore went back to the UK in 2007 to complete my course and we got on with life.
My wife was however devastated when we learnt that the medication had failed, and would cry when she wasn’t with me. She worried about the bone marrow transplant and feared that I might die. Yet, she always smiled when she was with meand radiated her positive energy all around. The hardest part was with my girls. They were only 11 and 9 when I underwent the transplant and explaining the situation to them was quite a challenge. My elder daughter thought that it was her responsibility to help her grandparents run the family while Mom and Dad were away. Most importantly, let’s not forget that for those two years, I was the focus of everyone’s attention. My children lost the family’s attention, which was hard on them. It was the price we paid.
With Fear, You Lose Control
I strongly believe in the power of God. Since childhood, I go to temple, I pray, I follow a ritual; it gives me positive vibrations. This was my coping strategy as I tried to navigate the challenges thrown at me. My advice to others is: “Take out the fear. If the fear kicks in, you lose control of everything. It is hard to be mindful when you are afraid”.
Each day I tried not to focus on what my disease was doing. I focused instead on what my life encompassed. If not for this strategy, I would have become preoccupied with just living to die, rather than the other way around.
I only followed the doctor’s protocol and NEVER Googled anything; you should ask your doctor if you have questions. I’m inherently very clear about my eating habits and my hygiene routine. People tend to usually follow a disciplined routine when diagnosed with a serious illness; however, all of this goes in the wind once their blood count begins to look good. Please remember that you must manage life mindfully. Exercise, yoga, and meditation, can enhance your life. Mindfulness, looking within, and having faith and hope, also helps a lot.
Hope and Faith
There is a difference between hope and faith. Hope goes hand-in-hand with faith, but without hope, faith cannot continue. The spark of faith is created in the subjective mind, based on thoughts, whereas hope rises from your spirit, a dogged will that is full of strength and courage.
My story is a stroke of luck: 70-80% medical, 30-20% luck and good vibes. Once you start creating those good vibes, it resonates everywhere in your life. Ever since my diagnosis, I’ve never asked “Why me?”. I chose to instead see it as a warning, and thought that maybe I can help and guide others to transition from fear to faith.
I believe in advocacy; I’ve seen and heard doctors, social workers, and families try to help patients. Some people don’t have the courage to fight, but we cansupport them and make a difference. The first three letters of cancer are CAN: So, yes, we can! The question I therefore leave you with is: Is cancer going to take control of your life, or are you?
Acknowledgment: This story is adapted from the article in TheBig Ordeal: Coping with Cancer
About the Author: Mr. Param was 36 when he was diagnosed with chronic myeloid leukemia, but he never lost hope. A chemical engineer in India, he has since become an inspirational advocate for others struggling with cancer.