About the Healing Circle
The Healing Circle is a place of sanctity for cancer patients, winners, and caregivers as they share their cancer journey without the fear of biasness or prejudice. Our Healing Circle is built on the foundation of love and kindness. Each audience listens with compassion and empathy. They honour each other’s unique way of healing through cancer.
About the Speaker: Soft tissue sarcoma survivor
Mr Atul had been diagnosed with Retro Peritoneum De-differentiated Lipo Sarcoma (RP DDLS, an extremely rare type of soft tissue sarcoma, which occurs in only 0.2% of all types of cancers) in March 2017. Since then, he has undergone two surgeries, chemotherapy and radiation therapy. He lost his left kidney and femoral nerve in the process. He has taken a holistic approach to fight cancer.
Mr Atul’s 5- pronged approach on his Journey
It was a 5-pronged approach that I adopted in this journey against soft tissue sarcoma:
1- Realization and acceptance.
2- Adapting and responding
3- Finding a way to resolve the problem.
4- Learning ways of solving the problem and absorbing the lessons that the situation taught me.
5- Implementation of the solutions in my daily life and moving ahead.
This five-pronged approach helped me a lot to carry myself forward in this cancer journey.
Difference between Curing and Healing
Curing is relieving a person from disease through medical treatment, while healing is a process of gaining sound health by the holistic approach which involves body, mind, and soul.
Soft Tissue Sarcoma- Mr Atul’s First Diagnosis
I was feeling perfectly alright and didn’t have any symptoms at the time of my diagnosis; my diagnosis happened by chance. I live in Japan, but every three months, I came to India for business and to meet my family, and had my ultrasound and blood reports done regularly since I had a slightly fatty liver and was a hypertension patient too.
I am from Ajmer, and I have done my graduation from MNIT. I came to Jaipur in December 2016, on the occasion of the 25th Alumni Meet. After the silver jubilee celebration at college, I got my tests done. My tests were good and I went back to Japan. Later, in February, I went to India again. As my son was to join the university in Japan, he wanted to get his tests done. So, we all took the tests along with him at my brother-in-law’s clinical lab. When we went to show him the test results, we were expecting that he would say something about my son’s food allergy, but he asked me how my health was. I told him I was alright, which I was. He said that the test results were not good, but we had yet to determine the exact problem. He continued that sometimes this could happen due to technical issues in the lab, so let’s have all the tests repeated the next day to confirm.
I went to his lab and got all my tests done, but again the reports were the same. ESR, which was supposed to be 15, was 120. The blood test reports also were not good, so he asked me to go for sonography as he had some doubt whether it could be TB or some other infection in the body, due to which, my WBC and ESR were so high.
I went for sonography in his lab, but nothing came out of it. The doctor was confused why it was so, and then my brother- in- law told her to do the sonography from the backside too. The doctor saw some black spots, so she referred me for a CT scan immediately.
While doing the CT scan, the technician found out that there was a lump and wanted to test it further. He asked me to lie down on my stomach so that they could do some more tests. It was an FNAC test, and the results were to come the next day.
Nevertheless, I travelled to Mumbai the next day for a pre-scheduled one-day business trip. I called my brother-in-law and asked how the reports were. He told me that “it might be TB, so let me consult my colleagues, and I will get back to you.” In the meantime, he got the tests done again in a cancer hospital, and the reports showed that there was a tumour and it was Retro Peritoneum De-differentiated Lipo Sarcoma, which is a very rare type of soft tissue sarcoma. Two days later, he took us to an oncologist. There, he revealed that there is something wrong in the reports.
It was shocking as to how and why it happened to me, but when we talked to the doctor, himself a lung cancer survivor, he told me a very positive thought, which struck my mind, “The Doctors do the diagnosis, but it is you and your God who decides the prognosis.” He told us that if we think it is a common cold, it will get cured like one. Although I was initially in shock, his words implanted the first seed of positive affirmation. I said, “I have lived in Japan for 25 years now. In Japan, because of the bomb attack, there are so many cancer patients. Cancer comes in common vocabulary here and is not a taboo word like in India. Everyone thinks that there are treatments for it, and we will get cured of it, just like any other disease. In fact, there are many cancer survivors in Japan who have survived for a very long time.”
When we came back home, I was just questioning myself, wondering, “why me?” and “why have I been chosen for this?” But these thoughts stayed in my mind only for 2-3 hours. Then I started thinking positive thoughts like, till now, God has given me all the rare and good things, so the cancer is also one among the rare ones. I told my wife the same thing, and her reply made me laugh, “In this case, I don’t want a rare thing, I just want our life to be completely normal.” The only thing we were thinking was to stay strong and move forward.
I was diagnosed just two days before Holi. There was a Holi celebration in our society, and thoughts like “Is this my last Holi?” were creeping up into my mind. But then I went out and celebrated Holi with everyone. After coming back to my room, I made up my mind that the end could not be so soon and that too losing to a disease. This thought was continuous in my mind, along with the thought that I had to do a lot of things before I left this world. So, I shifted my mind completely towards the treatment and was hell bent on getting positive results.
I wanted to start my treatment in Japan, so I came back with my son. We went and met the doctor here. In India, the doctors were saying that even though it was a rare type of cancer, it was in the soft tissues and not in any organ so they could take out only the affected portion through surgical procedures. But when we consulted the doctor in Japan, he saw the reports and said that the tumour is 20cm*10cm*6cm, and is in the third stage. He said that it has to be taken out, and the left kidney is also engulfed, so we have to take out the kidney as well. It was a big shock for us, but we tried to stay calm.
After two weeks, my wife also returned to Tokyo and we went for an MRI and asked the doctor how the reports were looking now, but he said it’s the same as before. The doctor asked me to also meet an orthopaedic oncologist in the same hospital, making us wonder why. So we went to consult the orthopaedic oncologist who told us, “We have to take out your femoral nerve, and added that we would keep a gastro oncologist in the operation theatre in standby so that while doing the surgery, if we find any impacts of cancer on your small intestine, then we can take out some parts of your small intestine too.”
The side effects of taking out the femoral nerve were that out of the three joints in my left leg (hip, knee and ankle joint), any one or two or all three could get immobilized and I would have to walk with a stick throughout my life. The doctor said matter-of-factly that this was a definite outcome. This, again, was too much for us to digest.
When we came out of the doctor’s office, my Japanese friend, who accompanied my wife, my son, and me for the consultations, invited us to his office as his wife was also a cancer survivor. We went to his wife’s beauty clinic to meet her. She was, at the time, 55 years old, and was energetic, happy, and glowing. We got motivated after talking to her. She told us that she had uterine cancer, and had undergone surgery three times and had taken 36 chemotherapy cycles within a span of 3 years. She reiterated that the doctors here were the best and that they would be able to successfully treat and cure me and that I too will be okay soon, just like her. We got inspired from her outlook on life after cancer, giving us immense strength.
We went home and thought that as RP DDLS is a very aggressive type of cancer, we should take a second opinion. In Japan, it’s very challenging to get an appointment at a big hospital, but we got a reference to the director of one of the best cancer hospitals through our friends. That was again, a grace of God. We always felt that God held our hand and guided us throughout our tough times.
That hospital was especially for sarcoma patients, so we thought that we were in better hands. The doctor saw the reports, and said that “The procedure is the same as the previous doctors told you, and our opinion is also that you go for it with them”.
We replied that there was a slight issue regarding the date of the operation, which was scheduled for about a month later. We asked whether they could give us some early date so that we could get the operation done in their experts’ hands.
They checked and confirmed my surgery for 26th April. I continued going to my office till the 20th since I believed that I should try to follow the normal routine as much as I could. Then, just two days before my operation, I got admitted to the hospital. The operating surgeon explained everything to us once more. I have thalassemia trait, so my haemoglobin level never goes more than 10. Because of the tumour, my HB level went down to 6, so the doctors told us that we would do the blood transfusion first, and if the HB level goes up, we will proceed with the surgery. Luckily, the HB levels normalized for surgery.
When I went to the operation theatre and lay on the operating table, the first thing I heard was “OM.” I initially thought that I might have heard it since I was praying to God, but then I heard it again, and I started moving my head in search of the source. The anaesthetist came and introduced himself with OM and Namaste. I was surprised when the doctor, who was Japanese, greeted me like that. When we talked, I got to know that he is a Yoga practitioner and has also visited India. And just that little bit of familiarity put me at ease and made me comfortable for my surgery.
The surgery went on for around 7 hours. I had a blood loss of 2 litres, and the cut was 27cm. I got my kidney and femoral nerve removed. I was then taken to the recovery room where the doctor asked me to move my legs, knees, and ankles. Surprisingly, I was able to move my left leg as usual. The doctor, herself, was pleasantly shocked. It was a miracle—I could continue to walk without a stick. My recovery was fast and we came back home; I was happy like a child that I had recovered.
The Unexpected Relapse
After the first surgery, I was to get my CT scans and tests done every 3 months. On my regular check-up on February 1, 2018, the doctors said that everything was fine. But the next day I got a call from the hospital saying that we are suspecting something. They advised me to get a PET scan done on 8th February, which was incidentally our wedding anniversary. We went to the hospital and got the scan done. While we were waiting for the appointment, we were getting calls from India and Japan wishing us. But we didn’t let anyone know that we were in the hospital.
We had our home-made food in the restaurant in the hospital. It was drizzling too, so it felt like a picnic. While on one hand, there was the tension, on the other hand, we were enjoying. At that moment, I turned to what I believe in— “Life is short; eat the dessert first,” and “You do what you can do, and God will do what you cannot do.” I’ve always tried to live my life based on these mottos.
When we met the doctor, they revealed that a reoccurrence had happened in three places: near the small intestine, diaphragm, and L1. They were adjacent and small tumours. The news of the relapse was a bigger shock than the first one. We were confused as to how it could happen again when my surgery went well and I was leading a healthy life. But then I thought that I came out a winner the first time, so I can do it again. “No matter what, we should always have a positive attitude.”
The doctors said that they would go with six chemotherapy cycles. After three chemotherapy sessions, I had my CT scan done, and we got to know that the drug was not effective in my case, rather the size of the tumour was increasing. So, the doctors asked for some time to decide whether to go with a different type of chemo or with radiation or operation. Later, they decided to go with radiation. So, I underwent 30 cycles of radiation. The good thing was that after radiation, the size of tumours reduced, and the activity of the cancer decreased.
We started thinking about how we could reduce the effects of chemotherapy and radiation, so we decided to focus more on the nutrition part.
Mrs Nirupama Shares the Nutrition Part of Mr Atul
We were eating healthy food for so many years. So initially, when he got diagnosed, it came as a big shock for me because he himself was very health conscious. We were taking organic food and were eating everything in moderation. After the first surgery, we did not change our diet as no one recommended to do so. We did not have any knowledge about the nutritional aspect in healing cancer. When it relapsed, it was a bigger shock because we were living a healthier lifestyle, according to us.
After reoccurrence, I thought that there was something that we were lacking. I had been following Luke Coutinho for a long time, so I messaged him on Facebook that “my husband is a cancer survivor, but he got relapsed, so I would like to consult with you”. I was not expecting his reply, but then I got a message from his team that I could consult him. So, we got his consultation, and he told us that we were already following a good lifestyle. But I asked him that as my husband is undergoing chemotherapy, I wanted a proper nutrition plan for him.
I felt that it was a very good decision from our part to take his advice because even though we know what a good lifestyle is, and we get a lot of information from Google, at the treatment time, you need a mentor who guides you and checks on you to find where you are going wrong.
We followed his program, and he set Atul’s lifestyle in a good pattern. Luke’s team and our assigned chief nutritionist, Sneha Gala Shah, guided us not only in nutrition, but also in the importance of positive affirmation, meditation, yoga, and supplements. What we were doing irregularly, we started doing regularly. Then he went sugar-free, gluten-free, and dairy-free. For the after-effects of chemotherapy, Luke gave a detoxification diet. I had to prepare the food three times a day and send them photos of it for evaluation. Atul was driving by himself, going for radiation, coming back, and going to the office. Because of the proper nutrition, he was much healthier, and all the chemo and radiation effects were almost zero.
I believe that even though a lot of details are available on Google, information changes nothing, inspiration does. Inspiration comes from a mentor, and thus if we don’t have a mentor, just following the information might not help us, since every individual has a different body, metabolism, and reaction to everything. So never be afraid to seek advice and try to find a professional to mentor you. The benefits will follow.
We won the second battle with the guidance of Luke Coutinho and Sneha Gala Shah.
Being More Mindful to Prevent the Third Relapse
My radiation got finished in July 2018, and after that, we had the thought that since this has happened twice even after following the proper diet, we should now look for other alternative treatments that could completely and permanently remove cancer from my body.
We were trying to seek some help from somewhere and were also trying to gather information from someone who had prior experience since I did not want it to happen for a third time. One of my friend’s wife had rectal cancer. She used to be in a terrible condition, with the initial treatment not working on her. She could not even walk without aid. Her husband took her to Anand Kunj, a Urine Therapy Centre in Kolhapur. He suggested that centre because the therapy worked for his wife and it’s been 5-6 years since she has been cancer-free. I was amazed as he explained the concept and benefits that they got from Anand Kunj.
We went to Kolhapur in August, 2018, and saw that it was not only a urine therapy centre, but a more holistic learning centre. We stayed there for ten days. I did fasting for nine days and also tried urine therapy. I reduced 7-8 kilos weight in just ten days. I learned more discipline and gratitude, importance of yoga, fasting, pranayama and the effects of meditation on our body. They taught everything in a theoretical and practical way. They told us to avoid the five whites, i.e.
1- White sea salt
2- White refined sugar
3- White bread (wheat/maida)
4- White rice
5- Dairy products
They also taught us how to balance the five elements of nature in your body and how to feel your body. I also learned the Emotional Freedom Technique (EFT) and Ho’oponopono Technique there.
The Third Relapse
I was following the techniques I learned in Anand Kunj. I went to India in January, 2019, and was planning to come to Anand Kunj every six months to rejuvenate myself. But in July, when I had my CT scan, I got to know that the cancer had metastasized to my lungs.
Again, it was shocking as we were leading a very disciplined and holistic life. It took us some time to digest this news. The position in which it was, was quite disturbing. It was in the centre of the heart and on the right upper lobe. If it was on the side, the doctors said they could have cut a part of the lung, and it would have been okay. But in my case, they had to remove the right upper lobe. My primary doctor said that we could go for chemotherapy first, but when I went to the chemotherapist, he said that I should do the surgery first. Then, when I went to the surgeon, he said that you should go for chemotherapy, and if it is reduced in chemotherapy, then we will go for the operation, as if it doesn’t reduce, we may not have a chance of operating at all. This back-and-forth only increased our dilemma.
I have some of my school friends in the US who are oncologists, so I talked to them, and they said that I should go for chemo first, but one of them said that if it could be removed, then I should first go for an operation. We went for the second opinion, to the National Cancer Centre Tokyo, where the doctor confidently said that “the operation can be done without any complications and after-effects. You would be free to go high and low altitude, sky or scuba diving, as you wish.” This really boosted our confidence.
One month prior to my operation, one of my friends introduced me to his friend who was doing research in the effects of intermittent fasting on cancer. I got in touch with him, and he asked about my journey. He said that I had been doing quite well, but in order to reach my goal, I had to retrace my steps and see what I missed. He advised me that before the operation, I should immediately start intermittent fasting for 18 hours. It was hard for me, but I managed to do that. It had a very positive effect on my body, my immunity got boosted, and I was ready for my operation. I also did three days of liquid fasting under his guidance before the surgery. One of my wife’s friends did Pranic Healing for me, and it gave me a lot of positivity heading into the surgery.
I went to the operation theatre with a very positive mindset. I had 3 inches cut on my left side, and the operation was completed in 2-3 hours. Recovery was also speedy and within a week, I came back home.
Mr Atul Shares His Learning
I am a learner from the beginning, and I always say to my kids too, that “You don’t die when your heart stops beating, you die when you stop learning.” That is what my mantra is, and I always try to learn more about holistic healing and other approaches, applying them in my daily life.
During this journey and before that, too, I think what helped me was reading a lot of inspirational books by authors like Louise Hay and Rhonda Byrne. I also did the Art of Living course in Tokyo in 2007, and that was the beginning of my spiritual journey. After that, in Jaipur, there is a school named Sahaj Marg, which is now famous by the name of Heartfulness, where I learned a lot of things. I learned gratitude and constant remembrance. I feel both of these go hand in hand. Gratitude is towards some superior force: in the form of God or whatever you believe in; remembrance is the state of being you are always in, constantly remembering Him. So, if we follow these two things in life, then most of our problems get automatically solved.
I learned meditation too. In between my Cancer Journey, I did a course with Siddha Samadhi Yoga (SSY) and learned lots of things there that show how we, ourselves, are responsible for everything in our life. Continuing my spiritual learning, I also did the Isha Foundation Course of Inner Engineering online.
I have been following a whole integrated approach, incorporating lessons I learnt from these different schools of thought. I realized that even in difficult times, the positive things that came my way were by the grace of God. I feel that when you believe in Him and have His blessings, you can see your path more clearly and have the courage and confidence to forge ahead, feeling His presence with you.
The most important thing is, never ever let your hunger die. If the spirit of hunger is there, only then can you achieve what you want. You set your goal, you achieve it, and every time you have to raise the bar higher. In my case also, at the first step, I set a goal, I achieved it, and in the second step, I had to raise it higher. If it was not raised higher, then I wouldn’t have achieved what I have achieved, and on the third stage again, the same thing happened. “You need to look at how you can improve yourself and set the bar higher with every step in life.”
Mrs. Nirupama Shares her ‘Me Time’ Experience
I always used to go to the ISKCON Temple Tokyo, and that was how I made my ‘me time’. I used to walk to the temple alone, and those 45 minutes were the time to let out my emotions and that used to prepare me for the next day. Being in front of Krishna every day gave me a lot of strength. I feel it is of utmost importance that the caregivers take some time out for themselves in some way.
I was with my husband throughout and practiced everything he did, whether it be in changing diet or going for urine therapy. But when I look back, I feel that I was guided by a force to do that because it gave me and my husband a lot of strength to go through all the things in life. We were always in a positive mind set by God’s Grace. Now we are on the stage where we take life as it comes.
Mr Atul’s Kids Shares Their Experience
Anushree– For me, I think the journey was different because most of the time, I was in India as I was in my 11th and 12th standard when my dad got diagnosed with soft tissue sarcoma. So, I was away from the three of them, during the operation time as well. It was difficult in the sense that I had to make sure that I was also giving strength to my grandparents as I was living with them. I was trying to be strong as I didn’t want them to think that I was going weak. We were all giving strength to each other and were trying to stay positive.
But I think that mom, dad, and my brother were very resilient throughout and did everything very bravely and managed to come out of it. I feel it was a good thing that I was in India because I don’t think I would have been as strong as them. But I am glad that I was there after the operation to help my mom, dad, and brother in the journey of healing.
Now my mom and I have a nice time trying new innovative ways to lead a healthy and holistic life, especially when it comes to food recipes even though it’s all gluten-free and oil-free. We try to make cakes, samosas, and everything for dad so that he doesn’t miss out on anything.
Aditya– When the initial diagnosis happened during Holi, I was in Delhi visiting some of my friends. I wasn’t in contact with my parents at that time. So, for me, it was a surprise when I came back to Jaipur to learn that my dad had been diagnosed with soft tissue sarcoma. But in hindsight, I thought that the timing was fortunate because I was coming to Japan anyway. I had been in the US for three years before that. For me, it didn’t feel very real until the surgery. Even when the initial diagnosis happened, I felt that at least I could be with him throughout the journey.
I remember that I didn’t really have a very emotional reaction until the day of the surgery. After the surgery was over, my mom was staying in the hospital overnight. I came back home alone, and I was in the balcony, and that’s when I let out a scream because I was like “Yes, We did it, the surgery was successful!” That was the only moment when I let out some real emotion. But I think it’s essential to let out your feelings periodically because otherwise it could get suppressed inside you, which won’t be a good thing. I feel that it’s important to manage your emotions and to talk to the counsellor about how you are feeling throughout the process.
Note of Thanks
At this time I want to address my family, friends and well-wishers with heartfelt gratitude and love. Their unwavering support and unbridled optimism in the face of the scariest moments of my life meant that I was never left feeling alone. Having such support by my side made all the difference—there was never a moment when I lost faith, because those around me didn’t let me feel disheartened.