About the Healing Circle
Healing Circles at Love Heals Cancer and ZenOnco.io are safe heavens. They are built on the foundation of kindness and respect. We all agree to treat each other with kindness and respect and listen to each other with compassion and curiosity. We honour each other’s unique ways of healing and don’t presume to advise or try to save each other. We hold all the stories shared in the circle within us. We trust each of us has guidance we need within, and we rely on the power of silence to access it.
About the Speaker
Ms. Svati Chakravarty Bhatkal is a writer, filmmaker and journalist. She is famous for her feature-length documentary Rubaru Roshni (Where the Light Comes In) and for co-directing Satyamev Jayate. She was the primary caregiver of her mother, whom she lost after a brave battle against cancer in April 2019.
Ms. Svati Shares Her Journey as a Caregiver
My mother had just returned from a four-month holiday with my sister, who lives in Singapore. I was so excited to see her as I was meeting her after almost two months. But when I asked her how the trip was, she looked at me and said that the trip was good, but there was one thing that might not be good news. I questioned what had happened, and she said that she had a lump in her breast. It came as a deep shock for me. I checked it, and I could feel the lump as well. I asked her how long she has been feeling it, and she said that she has been feeling it for more than a month. Without wasting time, I got the mammogram done that evening itself, and the confirmation came that it was cancer. When she came to know about the diagnosis, she was so calm; she didn’t complain, cry, or ask what will happen now. I realized how brave she was, but also felt that my shock, fear and sadness was so big that I didn’t give her any space. She underwent various scans, and we realized that she had a grade three Breast Cancer with metastasis, and there was a suspected tumor in the brain. But the tumor was in a very delicate part, so it was not possible to prove it. Since she did not have any major symptoms from the brain tumor, the doctors decided not to go after it. I was very fortunate because we were in the hands of a great doctor. But the two difficult questions that I had was how the future will be, and how normal I could make her life. I realized that there aren’t any assured answers for these questions, and the acceptance that there are no specific answers is one significant step in this journey. The second thing was the fighting for normalcy; she used to look very normal. Somewhere, even when we are very loving caregivers, the focus is about our own emotional needs, and our own need to feel validated that we are doing things right. Cancer is the thing which hits the patient, but as caregivers and as people who wants the best for the patient, do we actually end up creating a space based on how we want them to be, rather than what he/she actually needs? I started thinking about all these things and over time, I came to realize that there is a certain reality, and there is a certain expectation of what we want that reality to be. The peace comes in accepting that we have to take our expectations as close as possible to the reality rather than trying to pull that reality close to our expectations. Eventually, I felt that acceptance would come easier for the family if the conversation has already happened with the patient at a certain stage. It helped me because, towards the end with my mom, I had been able to talk to her and ask about her wishes. My mother always used to say that I don’t want to die in the hospital; I want to be at home. When the cancer started going out of hands, she also developed Parkinson’s, probably as the result of the brain tumor, and we realized that the end was coming, and took her to the hospital. Multiple physicians were consulting her, but one of the doctors, who had been seeing her even before her cancer, asked my mother what she wanted. And she said that she wanted to go home. She was in such a bad condition that day that I had to bring her to the hospital in a wheelchair. Even when we were leaving the hospital, I asked her whether we should admit her. But she said, No, I want to go home. She was quite clear, even though she was barely able to speak. She kept on giving indications that she doesn’t want to be in a hospital when her time comes. We realized that there might be chances that we would not be able to bring her home once she is hospitalized. And if she is admitted to the ICU, then we would be able to see her only for a limited time during the daily visiting time. So rather than getting her admitted to the hospital, we chose to take the path of palliative care. It was not an easy decision, but I think it was the right decision for her. I was very fortunate to get a palliative care team who were like angels for us. I had my family who always supported me, but along with them, there was one more angel, Rashmi. I can never forget what she has done for my mom. In the later stages, when the cancer had grown, we used to go out on some days when my mom would feel okay. Rashmi and mom would sit on the bench, and I would be wearing my shoes and walking up and down the park. I had a beautiful team to take care of my mom while I had to take care of the other things in my life. We need to take a pause and be grateful for such people who support our day-to-day life. My mother got married at a very young age. She used to live in Agra in a big house, and she was the youngest among her 13 siblings. She always used to tell me that she was a terrified and timid person. She got married at the age of 19, came to Mumbai, and was away from her family. But I cannot explain the amount of courage and level of acceptance that she displayed during the treatment. Whenever we used to go to the oncologist, she never asked questions like what would happen? Or how many days do I have? Somehow it worked well for her because she responded well to the treatment. The Chemotherapy worked for her, and her condition improved a lot. Even the doctors were stunned by her improvement because she had many co-morbidities; she had cirrhosis of the liver, high diabetes, blood pressure, and she was not a good candidate for Surgery. But we couldn’t prevent the inevitable forever, and she left for her heavenly abode, at the age of 75. I feel what worked for her was the faith in her doctor, daughter, and the faith that everyone will do right by her. She had the belief in the goodness of the world, which I believe you cannot have unless you have that purity within you. We surrounded her with positive things. She had good faith in Reiki, so we had it happening regularly. People used to come and give Reiki to her twice or thrice a week. I also have a friend who is a counselor, so she very kindly agreed to come home regularly right from the beginning of the diagnosis. My friend, who had cancer, highly recommended wheatgrass, so I started giving her organic Wheatgrass juice, and mom would take it religiously without questioning anything. She accepted everything; she was like a sponge; she simply absorbed all that we served in front of her. At a certain point, I realized that my mom likes to eat and there is only that much left in her life that she enjoys, so I am not going to deprive her of that. Every time we went to the hospital, we would eat samosas, and it was the ritual that after the treatment, we used to eat samosas. I feel that if there is a chance that we can retain the natural rhythm and little happiness of life, then we should do that. I have set-up a corner at my home where I have put her cupboard, which consists of all her stuff, and also put a chair near that. I sit there and talk to them and my mom. I share my happy and sad moments.
Ms. Svati Speaks on the Misconceptions About Palliative Care
Most people think that palliative care is because you have given up on the patient, but that is not what it is. My mom developed a very small bedsore after the palliative care started. So we called the palliative care team and informed them. They came, checked it out, and gave me the full routine of what I had to do. They also asked to call them, keep sending them pictures of the wound, and told that they will work to improve it. Nobody gives so much effort if they have given up on the patient. We are fighting but for a different set of goals; we are fighting for a painless and more comfortable release. After this experience, I started thinking about death in a very different way and realised that we had made death an enemy. We look at death as a defeat; we say that we will fight death. We treat death as the end of life, but I see death as a part of life: Death is as much life as life is death. Just as we train ourselves and learn how to live the best life we can, how would it be if we also start thinking, learning, and preparing ourselves about how to die the best death that we can, and make sure that we can give our loved ones the best death that is possible. Medical science has gone so far ahead that almost anything is possible, but yet where do you draw the line, how do you give a person a graceful, dignified exit that they deserve and what all can we do in life when we are alive so that our death can be the best possible death that we can have. I started thinking about it more and more, and I believe that this was my mother’s gift to me. She was so grateful and accepting of death. It was an example for me. She didn’t fight; she gracefully entered it. It’s high time we start talking about death, the art of dying, and normalise death a little more in our social interactions.
Ms. Svati’s Learnings from her Experiences
I am a storyteller and filmmaker by profession, which is also my passion. Through this whole experience, I know one thing that I want to do; write a book, or make a documentary film about the Art of Dying. I think that we focus a lot on the art of living, but what about the Art of Dying? If we can learn the art of dying, then it can help us to live a much better and happier life. I don’t know when it will happen, but I definitely want to explore it. I have been reading a lot of books about the art of dying and dying well. I know for sure that I want to plan how I want to die the best possible way, and I will definitely have conversations with my children in a very happy way about the possibility of me not being there, and how I would want to go, what I don’t want, and so on.
Rubaru Roshni (Where The Light Comes In)
It is the story of three murders that happened and explores what happens to the family of those who were killed and what happens to the families of the killers. Eventually, in two of the stories, the killers and the families who lost their loved ones meet, and what happens when they meet is in this documentary. Essentially, it is an exploration of love and forgiveness. Many people ask me whether it is possible for a person to forgive the one who killed his parents when he was just six years old, or to tie rakhi to the one who killed your sister by stabbing knife 42 times. I make documentaries; I like to tell people stories. I believe that if we can gather different kinds of human stories and experiences, we will be able to solve most of the problems of this world because the experience of each one can help the other. Based on Rumi’s poem, I wanted to give this documentary the title Where the light comes in, and then Amir Khan asked for the Hindi title and also suggested Rubaru Roshni, and that’s how the title came in. Rubaru Roshni has been an amazing journey for me. I think it has changed me as a person. I never thought about forgiveness this deeply and never imagined the power of it. Currently, I am working on a film which is about exploring the situation of sexual violence against women and children. I want to talk about things that affect all of us and hopefully find some solutions.