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Shailan Robinson (Blood Cancer-ALL): I Heard God, And He Is Beautiful

Shailan Robinson (Blood Cancer-ALL): I Heard God, And He Is Beautiful

My band, Adonai, and I had recorded an album in December 2017. That time, I was unaware of how handy my songs would come in during the next month. In January 2018, I was diagnosed with acute lymphoblastic leukemia, a type of Blood Cancer. I am not someone who reads up too much online or has a set rule for independent research. I was hospitalized for 11 days when there were extensive tests to find out what was wrong with my body. Like a train speeding towards me at 115 miles per hour, the cancer was detected. I have a happy family that consists of my parents, sister, wife, and children. For some time, I was taken aback and remembered spending my nights, lying on a bed in the cancer ward. After some nights into the treatment, I heard a voice speak softly into my ears. It said, You are on a protected path. Initially, I felt it must be my subconscious speaking to me. But then I heard it again. And again. And again. It repeated several times, and I realized it was not me but someone else. The night soon passed, and I woke up the next morning to read the Bible. When I opened the Holy Book, I landed on a page that had a verse: I shall live. I shall not die. And I will declare the glory of God. (Psalm 118:17) I realized that the Almighty has spoken to me. I was inspired to live and not die. Jesus Christ is marvelous, and His voice is beautiful. The doctors said that the blast rate in my blood was 85%. In layman's terms, 85% of my blood was already affected by leukemia, and my treatment had to start immediately. The doctors tested my spinal fluid at the end of those 11 days, and discharged me. My Chemotherapy sessions began, and I was asked to have 18 sessions in 28 days. Eventually, the last report came, and my mother, sister, and wife stood by me. A voice in my head told me, Do not look at the reports. Your reports will not determine your fate. Your faith will determine your reports. To this date, I have not checked any report of mine because I believe that walking with God is all about obedience. The doctors instructed me that I would need a bone marrow transplant, and my sister would be an ideal match for me. That evening, when my family was praying, my sister heard a voice. My elder sister shares a strong relationship with Jesus Christ, and He told her that she is not my donor. My wife had a vision that Jesus is on my back, and he has blessed me. I heard a voice that said, You do not need a donor. I am your donor. The following week, when I went for my bone marrow tests and reports, the doctor said that I do not need a bone marrow transplant since mine is already better than a healthy man's. That is when the doctor also identified the source of my physical ailments. He said that I had a genetic mutation. Some genes were not behaving the way they were supposed to. Instead, they were producing proteins that were creating tumors and blasts. Since it was a genetic disorder, there was no way that the doctors could cure it. All the doctors could do was prescribe me medicines. The medicine would cost me INR 1 lakh 67 thousand per month. Being an upper-middle-class man, I had to think about the expenses that my treatment would incur. That night, I got my medicine for INR 1 lakh 15 thousand; however, such a payment every month was demanding. Since it would go on for three to four years, I was worried. Jesus promised me that He had taken care of my funds; He would look after everything. You would be surprised to learn that, to this date, I receive the medicines for 15 thousand rupees per month. As time progressed, I continued on my journey of cure. The doctors stated that the genetic mutation would be a lifelong ordeal, but in July 2018, I went for a mutation test, and my oncologist was delighted and surprised at my reports. He pronounced a complete cure of my genetic mutation. Since his profession is not accustomed to such miracles, and he wanted to be entirely sure before making a decision, He called me back for a test after six months. It was still uncontaminated, and so was it in 2019. I looked at my sister and said that Jeus has indeed taken care of everything. I feel that the best way to get rid of any problem is by believing in God. Usually, people go to Jesus Christ when they have a problem. But I feel that they should go to the problem with Jesus and challenge difficulties. Jesus' support is what everyone must cherish. It depends on humans if they choose to amplify the problem or Jesus. The Almighty has been incredibly gracious to me. I was able to join back work in 6 months, on 1st August 2018. Jesus still holds my hand and guides me through life. All the songs that my band and I made were inspirational to me, and I would spend time listening to them to and fro the hospital. No one must give up! Being hopeful is a personal choice, and I understand that it is easier said than done. Even if I succumbed to my fate, Jesus would be the Glorious One because He does not need my validation. He is above us all! Some people may not believe my experience, but I resonate with Jesus, and that is what truly matters in the long run.
Radhika (Kidney Cancer Caregiver): Cancer Brought Me Closer To My Mom

Radhika (Kidney Cancer Caregiver): Cancer Brought Me Closer To My Mom

Cancer brought me closer to my mom My mother's tryst with cancer began 7 years ago when she was first diagnosed with stage 3 renal carcinoma, more commonly known as kidney cancer. Her symptoms appeared very late, which is why her cancer got so far. She was mostly healthy, until one day there was blood in her urine and blood all over the floor, that's when we knew something was seriously wrong. After her diagnosis in 2013, she had to undergo an immediate Surgery where one of her kidneys and some lymph nodes were removed. The recovery was gradual but my mother got through it and she was relatively ok for five years after that. However, in early 2018, she wasn't feeling too well; she had a persistent cold coupled with breathing trouble. We went to the doctor thinking it was probably just a seasonal flu, but her X-rays were troubling. There were darks spots on her lung and a Biopsy further revealed that her cancer had relapsed, and this time it had metastasised to 6 places in her body. The cancer had spread to her liver, her adrenaline gland, her brain and several other parts. The news was obviously devastating for me and everyone in the family, but for my mom, it was more than that, she saw it as a death sentence. In her world view, everyone who gets cancer eventually dies. But I refused to see it like that, I just couldn't. And since 2018, I have channeled all my energy into making her better. So far, this approach has worked. On the medical front, her oral Chemotherapy has worked and her cancer is being contained. But the side effects of Chemotherapy are harsh; skin changes have led to her complexion altering. She has also lost all sense of taste, everything she eats tastes bitter. All these side effects take a heavy toll on her, not to mention the constant physical discomfort. There are nights my mother just wakes up in Pain and there is no medicine that can really help her. It's during times like these that I use reiki to heal her. I learned it so that I can help her feel better. I also do this thing where I read to her, like we do to children! I read to her stories of other cancer survivors so she can get motivated. Recently, I read Yuvraj Singh's autobiography to her. I keep finding such motivational stories and books to read to her. Reading is pretty much the only thing that keeps the both of us going. My mother's battle with cancer is ongoing; it's a cruel disease that drains people mentally and financially. Nobody wants their loved ones to suffer like this. But her cancer has taught me a lot, it has taught me to never ever take things in life for granted. Every time I see her suffer from the side effects of chemo, I wonder how many of us ever thank god for say our sense of taste; it is something we don't even think about, but we must, we must be thankful. Cancer has taught me to be value every little thing in my body. It has also taught me that our lives are precious and it is our duty to do everything in our power to cherish it. On some days, it is hard to catch the silver lining. But on other days, I know that this disease has brought me closer to my mother in ways I would never have imagined. Today, she is dependent on me for almost everything and I wouldn't want it any other way. She is my mother and I can't imagine my world without her. Despite the struggle, she has me and I have her. Radhika's mother Madhu is now 64; she is still undergoing oral Chemotherapy treatment and hopes to beat cancer for the 2nd time.
Nasreen Hashmi (Oral Cancer Survivor): Never Take Your Health For-granted

Nasreen Hashmi (Oral Cancer Survivor): Never Take Your Health For-granted

https://youtu.be/iXs987eWclE Before I discuss my journey after the diagnosis, I would like to share how it all started. I feel it's immensely important for people to know how one thing can lead to the other. My diagnosis and treatment were delayed because of my ignorance. It all started with a throat infection when I couldn't eat anything spicy and had bleeding gums. Initially, I thought it's a minor dental issue and kept delaying my dentist's appointment. However, one day, white pus showed on my gums, and I realized it is time for treatment. I had delayed it till I didn't see it. When my dentist had a look at my gums, he thought it looked like trauma from a toothpick or some other injury. So, he recommended a minor Surgery where he would remove the pus and the stitch back my gums. After a week, I was scheduled to fly to the USA to meet my brother. I would be accompanied by two of my children and an ailing mother. I inquired if I would recover so soon. That is when my doctor told me that recovery would need time so I could opt for the procedure after returning from my trip. I returned after two months and bore the Pain till then, without saying anything to my brother. Meanwhile, I continued the medicines the dentist had prescribed. When I visited the dentist again, he was surprised to see how rapidly it had increased. He told me it looked different, and I asked him what the matter was. He promptly asked me to fix another appointment and come back with someone, maybe my husband or another family member. I understood that he was worried and reassured him that if it is a biopsy, then I wouldn't choose to delay it. After the test, he asked me to return for the reports after a week. I was absolutely sure that I can not have cancer because I have never tried Tobacco or gutkha. Moreover, I just take shisha once in three months, when I am out with friends. I remember the date, it was 13th July, and I had picked my daughter from school before heading to the dentists. I did not ask my husband to accompany me because I was so confident that it is just a preliminary test which is bound to be negative. My daughter was in her post-school cheerful and playful mode, and I was also quite relaxed. The moment I entered the chamber and my dentist saw my daughter, his first reaction was, Oh, you have such a small daughter! At that moment, I knew what my reports said. My doctor then confirmed my cancer and reassured me that it would be fine. I had to be strong for my daughter. Having worked in the insurance sector for 16 years, Medi Claim, I had often come across different patients with various ailments. I knew what people with cancer go through mentally and physically, so I remained calm and composed when I heard my diagnosis. In the 15 minutes that I took to reach my house from the dentists' clinic, I knew I would have to opt for surgery, the best doctor in town, and everything else. My blueprint was ready. Then came the challenge of breaking the news to my family my husband, an ailing mother, a son of 13, a daughter of 6. Also Read: Cancer Survivor Stories I did not initially want to break the news to my mother and children. As I was entering home, my husband was leaving for a meeting. I asked if it was important, and he said yes. So, I informed him that I would like to share something with him when he returns. By now, he had forgotten entirely that I had gone to collect my Biopsy results. Halfway through, he realized my test results and came back to ask me what my reports said. I told him about my diagnosis, and he immediately assured me that everything would be fine, so there was nothing to worry about. I reassured him the same, and I was glad that we were on the same page. I told him about the doctor I wanted to get treatment from and tried to fix an appointment. However, the clinic staff informed us of slots available only after 15 days. When I told them that I could not wait for so long, they suggested I come to the clinic and wait and slip in as soon as the doctor was available. We went to the clinic at 4 o'clock and remained until 12-12-30 to meet the doctor. During the waiting hours, we saw so many patients, mostly with mouth cancer. Honestly, I was traumatized to see them, and then I checked more about deformed faces on Google. My friends and family supported me throughout the journey. The best part about my treatment was the transparency my caregivers and the doctors maintained.- I knew everything that was happening, and there was clarity in communication. We broke the news to my mother after my Surgery because I would be away from home. She has been bedridden for the past 6 years, and I did not want to stress her in any way. She was the only one who asked why this happened to me, and I told her it was the only question I had been avoiding. I had not questioned God when the good things had happened to me, so I wouldn't ask God now. It is a test, and I will come with flying colours. I've read the book The Secret and applied the same to my life. It is one of the main reasons why I have always remained positive. Usually, cancer fighters have negative thoughts of what if their survival is challenged and likewise. But I fought those thoughts because I understood that only I could help myself mentally. The others are here to support me. I want to share another incident that happened after my Surgery. Since I was always worried about how my face would look after the surgery, my friend came running to me after the procedure was over. I was still in a state of anaesthesia, but she woke me and told me that my face was fine, and the doctor had done a beautiful task. And then I went back to sleep. My journey is not just mine but also my caregivers'. During the surgery, my upper jaw teeth and hard palate were removed. I had a week's time to recover from this as I also had stitches. I was given juices, pumpkin soup, milk with protein powder, etc. Since I am quite a big foodie, I explained that this would be my new normal and that my actual battle had begun now. I started having only liquids, and after a week, my Radiation therapy was to start. Radiation was a challenging phase when I experienced side effects such as nausea, sores, darken skin, and lack of energy. I grew so weak that even a necessary task such as going to the washroom required assistance. Thankfully, I did not have any Chemotherapy sessions. I underwent 60 radiation sessions in one and a half months. It became a regular thing for me daily, except Sundays. Moreover, I had grown quite smell-sensitive. I motivated myself daily by telling myself that today is better than yesterday, and it will be better tomorrow. I took each day at a time and reminded myself that this phase would end soon. I survived only on liquids and lost 40 kgs during that time. After three months, the doctor called me for a consultation and declared me cancer-free. This was in January 2018, my birthday month, and we organized a small get-together at home. One of my biggest concerns was food. During a visit to the doctor, I met a man who himself was a mouth-cancer fighter. He explained to me that I could eat whatever I want all I needed to do was blend them. When I went to my dentist for the dentures, he suggested the same and told me that if I left solid food, then I would have to live like this- my body would become accustomed to liquids only. I went downstairs and had pani puri with sweet water. I knew I was supposed to avoid red and green chilis, but everything else suits me perfectly. Gradually, I experimented with pepper, garam masala, etc. Today, after two years of my journey, I can have every food item I want. I can have pizza, white-sauce pasta, non-vegetarian dishes, and everything I love. But this has been possible only because I tried. You shouldn't give up either. I can easily go on family vacations and have meals at restaurants. It has been a learning process for me, as well. My elder is 13 years old and manages most of his tasks on his own. My younger one was five years old at that time and was relying on me. I needed breathing space for myself because it could get quite overwhelming. My husband explained to her that Mumma is unwell, and somehow, she also phased out on me when she saw me tired and lying on the bed all day. Instead of clinging to me, she moved her focus to my husband. My husband had taken a break from work and managed everything very well at home. I had left my job when my child was born, so I did not have any issues on the work-front. I want to tell everyone whether they are a cancer fighter or not, that they should not take their health lightly. Being in the insurance sector myself, a mistake I want everyone to avoid is not opting for insurance. Though we are from an upper-middle-class status in society, it wasn't easy to let go of 10 to 12 lakhs in my treatment. I feel that insurance would have helped us significantly. I firmly believe that situations may be difficult, but life is good. Listening to the Quran and music have helped me in my healing process. My message to all cancer fighters is that I understand what you are going through is not easy. However, you must support your caregivers. You are going through the journey because you have cancer cells, but your caregivers are going through this journey even without having cancer. Fighters must cooperate as much as they can by eating them timely, taking their medicines, and maintaining a proper schedule. On the other hand, caregivers must give love, support, care, and empathy to the patients.
Kartikeya & Aditi Mediratta (Blood Cancer): He Has Been His Own Biggest Advocate

Kartikeya & Aditi Mediratta (Blood Cancer): He Has Been His Own Biggest Advocate

Early Symptoms, Misdiagnosis and the final revelation: Around April 2017, I and my husband were working in different cities and he was staying in Bangalore alone. He regularly practiced Yoga and was physically fit, but suddenly started suffering from fever, night sweats and breathing difficulties. When it didn't get better for a couple of weeks, we saw a nearby doctor. Initially misdiagnosed as tuberculosis, he began the treatment in Bengaluru. However, he didn't get better and a senior pulmonologist figured out that something is wrong. After a series of tests and a surgical biopsy, we came to know that he was suffering from T Cell Lymphoblastic Lymphoma, a rare form of aggressive Blood Cancer. Gearing up for the fight: As soon as the news spread, most of our relatives back in Gurgaon and New Delhi started offering help. We felt very lost due to lack of enough information. Blood Cancer was not something we knew or understood. We never thought it could happen to us. It took us some time to realise the gravity of the situation. All at the same time, there was too much information and still a sense of not knowing what is the right thing to do-choosing treatment protocols, managing finances, making decisions about our jobs, everything seemed complex. Lack of Information: Due to lack of a support system in Bangalore, we took him back to Gurgaon and started treatment there, hoping for a better environment. His extended family has several doctors who helped navigate the first few weeks. He is a person who works with a lot of information and likes to face the truth. Unfortunately, the general approach of doctors and hospitals can be to hide information thinking it will overwhelm the patient and their families. We kept circling around the oncology and nursing staff to find basic things such as length of our treatment protocol. Our hospital in Gurgaon was extremely busy and crowded and it was hard to get the care and attention Kartikeya needed. The Tirade against Cancer: Kartikeya turned out to be his own biggest advocate. While he had all the help he needed from family and friends, he chose to ask difficult questions from his doctors to that they could help him make better choices for his treatment and survival. Keeping in the dark about the treatment protocol is not a great way to deal with a cancer patient. Ultimately, we spent 3 months getting treatment in Gurgaon and Kartikeya took the bold decision that he wanted to find a hospital and oncologists who would listen and care more. He wanted to move back to Bangalore, start going to work again and resume normalcy in life as far as possible, even with two years of intensive treatment still remaining. A God-sent Angel: This is when we understood the importance of doing proper research and consulting and finding a trustworthy doctor and hospital system. We showed Kartikeya's reports to Dr.Hari Menon who had recently started working at Cytecare Hospital in Bangalore. He has been a god-sent angel along with all the doctors and staff at Cytecare. When we met him, we immediately knew getting treated by him would make Kartikeya feel infinitely better. With a rich background of over two decades and a very caring and experienced nursing and palliative care team, we realized how proper care is meted out to Blood Cancer patients. The Road to Recovery: My husband started feeling better! Most of his tumours started dissolving. His blood counts used to fluctuate due to impact of chemo, but Dr Menon gave him the freedom to go to work whenever he could. His philosophy is to allow patients to deal with Blood Cancer similar to any other disease. Stopping life is no way to live. With the amount of care, respect and love Kartikeya got from his new treatment team, he felt much stronger emotionally and this also improved his physical recovery. My mom in law took a year long sabbatical to care for Kartikeya. We were both able to join work and were lucky enough to have support at our workplaces too. That had an invaluable impact on the overall situation. The medical treatment got over by the middle of 2019. Parting Message: The Patient and care giver have to be the biggest advocate. Arm yourself with as much information as possible and ask the right questions. Control the urge to Google prognosis data and side-effects of drugs. Irrespective of our health conditions, it is imperative that we educated ourselves about health insurance. I was so ignorant that I hadn't even added him as a nominee in my corporate insurance. Most of us underplay our medical problems and are caught unaware when something big like Blood Cancer happens. Even doctors try to suppress issues. Our country lacks the infrastructure and support system for cancer patients and their families. But with people like Dimple and initiatives like ZenOnco.io, we know that the future will be in better hands.
Akash Srivastava: A Caregiver Beyond Words

Akash Srivastava: A Caregiver Beyond Words

Akash Srivastava, a caregiver, is an altruist beyond words. He goes to the extent of taking care of poor cancer patients from his salary. On average, he spends a part of his salary for cancer patients who cannot afford to purchase medicines, groceries or essential commodities. In a recent interview with ZenOnco.io, India's first AI backed Integrated Oncology group, he says, "My grandmother had cancer. I drew inspiration from my her episode and decided to do my bit for the society. I work with a lot of poor cancer patients. Right from getting them admitted to buying medicines for them, I spend a part of my salary for such needy people and their families every month." ZenOnco.io: What inspires you to engage in such altruistic activities? That too, consistently? Akash: My father is a great source of inspiration. He pitches a part of his monthly pension for the genuine and Nobel cause. Along with him, the happiness and the innocent smiles on the faces of cancer patients is what inspires me further. Knowing that I am able to bring at least a small change in the lives of so many people are almost addictive. I attend meetings for them and motivate them at least twice a week. ZenOnco.io: Do you have any advice for the patients? Akash: Life is not that complicated. It is easy to get demotivated and accede defeat. Even while going through treatment, they feel that they won't survive. The same sentiment is reflected across their families. Even if it is not for financial help, we visit them to provide emotional and moral support. There are times when we have to shell out our entire salary. We wish Mr. Akash, his noble father and other angel-like caregivers all the best for their future endeavors.
Aditya Putatunda(Sarcoma): I Keep Him Alive In Me

Aditya Putatunda(Sarcoma): I Keep Him Alive In Me

It was the year 2014 during Diwali when we got to know that Dad has cancer. All of us were shocked to hear the news. I was located in Delhi and my sister in Bangalore and were not with our Dad. The first symptom was when Dad started having Pain in his thighs. There was a lump in his prostate, and we did not think much of it and for the initial six months, he ignored it as there was no Pain. This generally is the case with people who have no idea about cancer. After the initial four-five months, Dad started having pain, and he decided to go to the doctor. My parents were staying in Ranchi at that time. So, they went to a local doctor who advised to get a Biopsy done to be clear as to what the lump was. My sister asked my parents to come over to Bengaluru for the check-up as the facilities are good there. So, our parents went there and Dad got his test and check up done at Manipal Hospital. That is when he was diagnosed with cancer. The first thought that comes to your mind when you hear the word cancer is how much time, do you have. Dad was a very healthy man. Having been from a sales background in the Pharma industry, we have seen Dad travel a lot and lead a very active life. We seldom saw him fall sick, and so it was a shock when he was diagnosed with cancer. As compared to Dad, our mother has been the one whom we have been more concerned about health-wise as she is diabetic and has had health issues off and on. I was having my final exams and wanted to go to Bengaluru and be with them. But my father supported me and told me to focus on my studies and not miss my exams. All he told me was to give the exams properly and get my degree and travel down post the exams as the cancer was a situation that was not going to go away soon. We all decided to be practical and not handle the situation emotionally. Post my exams I travelled down to Bengaluru to be with him. The treatment being given was for sarcoma, which is a soft tissue cancer. Dr. Zaveri, who is one of the best doctors in Manipal Hospital, carried out the Surgery on his external where the cancer was found and this was followed by radiation. It all went well and Dad was relieved. Chemotherapy was also done but the dose was less than in this type of cancer it is not very effective. We all kept a very positive mind during this time as even the doctors were helping us by being optimistic and telling us not to worry. During the Surgery and radiation, there was a risk of paralysis to the leg as the infected tissue was very close to a nerve and the doctors had to carve out the tissue cautiously without touching the nerve. We all prayed for the Surgery to go well. Post the Surgery Dad could not feel any sensation under his feet when he walked, so we realized that this was a side effect of the surgery, and we were happy as it was relatively a minimal issue in comparison. The doctor asked him to keep coming for check-ups as a chance of relapse is always there. These check-ups are scary for every family with a cancer patient. So, every three months it was like a dagger on the head as it would be uncertain of what will happen. By 2015 he had recovered well and was doing fine but then by the end of the year it relapsed. This time it happened in a part of the body where Surgery was not possible. We first went to Manipal and then to AIIMS, New Delhi. But between this, my sister shared a blog with me about Yeshi Dhinden, who is the private doctor of the Dalai Lama and lives in a Dharamshala in McLeod Ganj. He uses some Tibetan Medicine to treat such diseases. So my sister wanted me to go and find out about this as she felt maybe Dad would get cured and would not have to go through so much Pain again. The medicines were available only based on booking done earlier. They did not have any online facility. On the date of the booking, one has to go with a sample. The office would open at 10 in the morning, but I was surprised to see that at 3 in the morning the place was crowded with people rushing to get the medicine. I was standing in the queue and talking around, Most of them were relatives of cancer patients. The crowd included people from all walks of life and I heard many stories about recoveries because of this medicine. I got optimistic about it and managed to get a booking for two weeks later. Dad was not convinced about it as he was from a pharma background and had handled medicines. But he came with us for the appointment after we convinced him. The doctor, Yeshi Dhonden, examined him and communication was a difficulty as there was a language barrier, but we managed it somehow. He gave some pills like Hajmola candies which were distributed from a medicine counter. This doctor is very popular there, and I am not sure if he is still around there. Even if he is, we would not be going there. The chamber was well organized and only forty patients were seen a day. They could courier the medicines to you after your first visit as going there every time was not possible. Dad started taking the medicines. Initially, he had a Pain in his thighs, but then he got some relief after having the medicines. We parallelly continued with the other treatment too. We conducted an Ultrasound which showed the growth reducing in size which we felt was a miracle. I again took a urine sample of Dad's urine to the Dharamshala, and they did some tests and gave more medicines. Eventually, at AIIMS we got to know that the lumps were placed too internally and Surgery was ruled out. That left us shocked as that meant that Dad had to live with it. We met Dr., Rastogi, and he started giving Chemo and dad's health started deteriorating. Dad stopped the Tibetan medicines too even though I went and got them. There was no difference in the size of the tumor. As a last resort, the doctor advised giving Spazopanic but dad's age was a factor as this medicine is a targeted medicine which cures a particular part only. To help us be positive, the doctor showed us many positive cases where people survived with this medicine. I then had a very difficult discussion with Dad after this where I told him that this is our final shot at curing your cancer but it could go either way. Dad just said that he had suffered enough and that he wanted to take this chance and that if anything happened then he was only responsible for it. I never discussed this conversation with my mother or anyone even after a year after Dad's death. I was perplexed but Dad was suffering and no one likes to see their loved ones in Pain. Dad was taking Morphine which was not helping him much because he would remain awake for days in Pain. I still requested Dad to think once more about the pros and cons as I did not want to lose him. Dad said that this was our only hope and even if it did not, he wanted us to know that what he was living was not good either. As he had an idea of medicines and how they work, he knew what he was saying. Dad dealt with the situation in the best way as he had seen many deaths in his life and was mentally strong. I consulted the doctor again, and he said that this is the last chance as eventually, even this would go away. With this medicine, dad had a chance of getting a new lease at life and if it did not work also the kind of life Dad was having was not worth it because the quality of life also matters and Dad was suffering badly. I could not be selfish and make Dad live just for it. So, we decided to go for it and Dad remained positive and gave me courage whereas it was I who should have given it to him. But as fate would have it, the medicine did not help. He took it for a month and his health deteriorated further. During the consumption of this medicine, one needs to keep an eye on the heart function. On the 23rd of September 2016 an emergency happened. On that morning my Dad was looking all swollen up and I took a picture of him and sent it to the doctor. The doctor told us to stop that medicine and take him immediately to the hospital to get tested. While getting the test done the doctor was also present, and he said that only 22% of your Dad's heart was working and asked to admit him immediately. Luckily, my friend was with me and I asked him to drive the car to the hospital. Dad understood what was happening and asked me to pick up mom. We called his doctor up, and he asked us to come soon as he would help to get him admitted immediately on reaching. We reached there and thanks to the people there, Dad got admitted. My sister also came down from Bengaluru. A Cardio specialist came down and consulted dad's oncologist and then said that seeing everything, there was nothing they could do except giving all the support that they could medically in the form of ventilators and other support to keep him alive, My sister did not want to believe it and was fighting and wanted to take him out of the hospital and shift him. I explained it to her and even the doctor asked us to understand the reality of the situation and told us that we could only take him out after signing a paper stating that we were doing so on our responsibility. If anything happens to him then they would not be responsible. We discussed and decided to stay. I stayed with my dad all the time. On Saturday night I was with him, and dad had started talking gibberish and was living in the past. He would ask me if I had come back from school and would tell me not to lose my pens which I used to when I was young. On the morning of the 25th of September 2016 at around 10 a.m. he passed away after having a seizure. I was ready for it as I already had a discussion with the doctor and I knew what was going to happen. I am still in touch with people having similar cases. This experience changed me completely as I used to take life very casually. But as Dad had wanted me to live more responsible, I learned to be so. What I learned from this was that no matter even if your loved ones are not around you physically, they are with you in your conversations, your surroundings and in everything you do. I was 25 years old when I lost him and I missed having him around as that was the age when my life was evolving. So, even now I keep him alive in me by thinking how Dad would handle any situation that I face and live like he wanted me to. Dad would always say that in life there are two kinds of problems; one which you could brainstorm about, find a solution and solve and the other which cannot be solved. So, solve the problem that you can and forget the other. He maintained the same attitude towards his cancer too. He told me not to regret as we did the best we could and not live on contemplation. It is important to do things and not think about what is right or wrong. He asked me to take care of mom as he would not be around, and I am proud of being able to live up to his words. I still go to support meetings and I try to help as much as possible with my busy professional schedule. Many people come from far-flung places and I speak with them too. I am delighted with the way Love Heals Cancer is working towards helping people suffering or associated with cancer and also spoke to Dimple and expressed my appreciation.
Aman (Gallbladder Cancer): Choose Hope Every Time

Aman (Gallbladder Cancer): Choose Hope Every Time

How gallbladder cancer began My caregiver experience started back in 2014, when my mother fell ill. She started getting tired and experienced unexplained weight loss. We thought of getting it checked to be safe since my mother had also suffered a similar issue with gallstones. We consulted our family doctor and got all the necessary tests done. At the end of it, the doctor advised consulting a bigger hospital as her situation looked a bit more complicated. We consulted another familial doctor and conducted a couple more tests. That is when we found out there was a tumor in her stomach. A CT scan later, we found out she had stage four gallbladder cancer. It had spread to her lymph nodes too. Although we were distraught, we made a quick decision to startchemotherapy. After eight cycles ofchemotherapy, the tests revealed that her cancer had significantly reduced. The doctor suggested getting the tumor operated. After a year-long fight against gallbladder cancer, my mother was finally free from it. She took a month to recover at the hospital, but it was almost like nothing had ever happened to her when she returned home. She went on regular morning walks and controlled her diet. As a precaution, we would take her for a periodic checkup every three months. The doctor then recommended that we could have a regular checkup every six months since her tests were utterly routine. While this sounded like positive news, the outcomes were not. The battle with gallbladder cancer was far from over In 2018, cancer spread to her lymph nodes, but this time due to a delay in checkup, its size was consequential. All the doctors we consulted suggested avoiding Chemotherapy as she had already gone through too many sessions before, which could further deteriorate her health. We consulted another doctor, and he prescribed the same treatment. So once again, she went through 6 more sessions of Chemotherapy. The results were positive, and she was slowly recovering too. But six months after the treatment, she had a Pain in her lower back. After a CT scan, it was found that not only had cancer resurfaced, but she also developed Chronic Kidney Disease (CKD) because of the excessive Chemotherapy sessions. This time, to avoid any further complications with her kidneys, we consulted with a nephrologist before taking up each Chemotherapy cycle. The good part about this was that cancer remained stagnant, but after two months of treatment, she again felt Pain in her nodes. At this point, we just wanted to eliminate her Pain. Her doctor recommended trying out Radiotherapy. She went through 25 sessions of Radiotherapy and came out completely fine. She maintained an optimistic attitude through it all and was always comfortable with all the treatments. She was energetic and even carried on with morning walks and exercises. A few months later, she went through another round of Radiotherapy. The cancer was spreading to chest nodes, and she was suffering from persistent fevers. This session helped her to an extent, but when we went for a checkup a few weeks later, scans showed that she had developed fluid in both her lungs. The doctor suctioned the juice out of her lungs and prescribed her medicines for another month. The Pain returned in two months. Ultimately, we decided on Immunotherapy. We sent her DNA Gene test reports to the US. They determined that the 'tumor mutational burden' was at an intermediate level. I contacted many hospitals, but they had a different opinion on Immunotherapy since it was intermediate. Some hospitals advised going for the second-best treatment, but that would involve risking both her kidneys while the others suggested trying Chemotherapy once again. My mom, at this point, was already on morphine for a year. So after a lot of consideration, we decided to go for Immunotherapy. When we gave her the first shot of Immunotherapy, her Pain was relieved, and the tumor suppressed within a week. Fifteen days later, he got another round of shots. But this time, he, unfortunately, contracted pneumonia. But due to high doses of medicines with fentanyl patches and morphine, she developed Parkinson's disease. My mother was now suffering from gallbladder cancer, chronic kidney disease, and Parkinson's disease. Additionally, she was mostly functioning on only one lung. We took her to the hospital, where she stayed for 40 days, to treat all her ailments. At some point during her stay in the hospital, she fell off the bed and was injured. She had to start using a wheelchair as she could not walk around anymore due to Parkinson's disease. The doctors claimed that it was a miracle, but my mom recovered soon. They did many more tests on her, and all of them came out normal. Within a few days, she was discharged and back home. Of course, she was bedridden and had to use the wheelchair to move around, but she felt better. A month later, she complained about her stomach feeling very tight and had difficulty moving. So we took her to the hospital. Her Ultrasound reports revealed that sepsis had developed in the stomach area and infected her lungs. We got her admitted by evening, but her condition worsened. Her blood pressure, sugar level, and saturation level all dropped overnight, so she was ruhed to ICU in the morning. The doctor said that her liver was damaged because of years of excessive medicines and the chances of survival looked bleak. At the time, we had a lot of palliative counseling about this situation. "What would you do in this situation? Would you like to opt for the ventilator or not? I had decided that we would not be using the ventilator. In her last few days, we looked for her comfort. We wanted to keep her Pain low and be prepared to let go when it was time to do so. My thoughts about the journey The journey in itself was five and a half years, but during that time, we always made her feel like it was expected, and everything would end soon. Throughout her treatments, we convinced her that she would be fine, so she always maintained that optimistic outlook. She struggled, but never lost her cheery smile and personality. Maintaining this attitude was crucial to avoid falling into a depressive episode. This journey made me realize many things. Firstly, in terms of cost, the treatment was very financially draining. But again, it made me wonder how poor people could afford to pay for such expensive treatments like Immunotherapy. We were paying 7-8 lakh every month for my mother's treatment. I saw how backward palliative care is in government hospitals. Whenever I would take my mother to a government hospital, she would receive treatment while sitting in a chair or even on the floor. I realized that most government hospitals do not know how to treat a patient who has multiple complications simultaneously. The quality of treatment in government hospitals is still very primitive. Since the doctors have over 100 patients to treat every day, it is clear that they are overburdened, which is why a patient and caregiver need to choose a doctor and hospital very carefully. For too complicated cases, like my mother's, it is better to choose a private hospital. For some patients, Naturopathy may work, but for others, allopathy is the only choice. One standard treatment does not work for every single cancer patient. But the decisions should be taken diligently, as one wrong move could cost you everything. Mental healthwise, this journey has affected my mental health as a caregiver. My personal life was involved too, and I even lost my job because I would have four appointments a week to attend with my mother. People in society don't understand this, not unless they know what the person is going through. We realized that in a joint family, she would have someone to take care of her. So we invited relatives from our hometown every once in a while. Being around people helped her a lot. Parting message To all the patients and caregivers, I have only one piece of advice. Always keep your hopes high; it is the only thing you can hold on to. Having a positive frame of mind helped my mom to deal with this disease without any mental trauma. Yes, she was in pain, but she still smiled through it all, hoping that she would come out of it one day. Also, feel free to cry when you need to; it helps relieve distress. Another practical advice I'd like to give is to be conscious of what you are doing. Do not panic during the treatment but do maintain a certain level of awareness. As a caregiver, you need to be proactive. Never have the 'let's wait until it happens to see what we can do.' Be decisive of what and how you want to go about the treatment. Often caregivers, and even patients, undermine their need to socialize and try staying isolated. You will have no one but your close family and friends to keep you smiling in these trying times. It would help if you tried to be in touch with people who have similar experiences as you. They can provide more comfort than any other person can. https://youtu.be/g2xEQA8JStQ
Anirudh Jamadagni (ALL): Against All Odds

Anirudh Jamadagni (ALL): Against All Odds

Background: A software techie based in Banglore, Anirudh was diagnosed with Acute Lymphocytic Leukemia, Type 2 Cancer, Stage 3 . He went through ragging throughout his childhood developed learning disabilities due to the side effect of Cancer Treatment. As if un-touchability in his extended family wasn't harrowing enough, even his married life was affected and his wife filed for divorce. But thanks to his loving family, he conquered all odds and emerged victorious. Diagnosis: On 5th March 1995, he was diagnosed with Acute Lymphocytic Leukemia Type 2, Stage 3. Among 40 kids admitted that he had only a meager chance of survival. Treatment: Anirudh went through 32 chemo cycles, 48 bone marrows, and 42 radiation cycles. Observation, Maintenance, and Relapse are three stages of Cancer Treatment. Bone Marrow was really tough and painful for Anirudh. Some injections put through the veins literally burnt his nervous junction. One particular tablet led to the growth of thorn-like growth in his throat. Family Support: His father wasn't mentally strong enough to see his son going through all the physical Pain but his mother was with him day and night. His teachers, parents, and friends supported him very well. There was a taboo in his family, and he was treated as an untouchable in his extended family. Side Effects: Anirudh lost hair and his eardrums were affected. He went through major Surgery to revive his hearing ability. He had to cope up with academics. He developed a learning disability and dyslexia as radiation affected his learning ability. The immunity had gone to an all-time low and his body started stinking. He had to face frequent cold and fever. As if that wasn't enough, he developed Calcium deficiency and developed three to four fractures.
Nitin (Stage 3 Breast Cancer Caregiver): Be The Emotional Anchor

Nitin (Stage 3 Breast Cancer Caregiver): Be The Emotional Anchor

Treatment of Breast Cancer Stage 3 My mother was diagnosed with stage 3 Breast Cancer in 2019. Usually Breast Cancer lumps are detected in the breast cells. However, in my mother's case, some of the lumps also spread to her armpits. Remember, she is a Breast Cancer stage 3 survivor, after all. She had undergone 6-8 chemo sessions. These conventional Treatment for Breast Cancer indeed helped mom. Besides these, she also quite benefited from meditation and Ayurveda. She also had to take 6-7 Craniosacral therapy (CST) sessions. These sessions were relaxing for her. You know that Craniosacral therapy is non-invasive. It just applies moderate pressure on areas like head, neck, and back. So, this did great for mom as it relieved her from Stress and Pain to quite an extent. I think this kind of therapy should be recommended for all cancer patients, as it heals the side-effects of treatment, and boosts both immunity and moral. Family Support during her Breast Cancer Stage 3 In one word if I have to give my mother's Breast Cancer survivor testimonial, it would be "shocked. Yes, everyone in the family was just shocked to know her diagnosis. I'll say that the first few months were difficult for her. However, once her hair started to grow back after Chemotherapy and radiation, she truly began to heal from her cancer. Since then I knew that she'll transform to tell herinspirational Breast Cancer survivor story one day. As a Breast Cancer caregiver, I had left my job and had gone home to spent time with my mother.During the entire period of her treatment, our whole family was there to support her. That must have helped her in the healing process. She had to go through a lot of Stress and Pain every day. My mother is courageous, super cheerful, and now she is a Breast Cancer stage 3 survivor. Any type of cancer journey is like an emotional rollercoaster ride. During this time it is crucial that the patient is not left alone. Give as much emotional support as possible. In this world of technological advancements, medical support and survival rate are increasing. Everything has become fast paced. Things are constantly evolving and changing. The only thing that remains constant is family. Therefore, it is our duty as a supportive family to stay strong and united. We must ensure that we become powerful emotional pillars for the cancer patient. Their families are their emotional anchors. "The Art of Living of a Breast Cancer Stage 3 Survivor Breast cancer or not, our entire family is a fan, admirer and follower of Guru Dev Shri Shri Ravi Shankar. We came across so many Breast Cancer Indian survivors' stories in the Art of Living community. Such real life Breast Cancer stories motivated us. I think such Breast Cancer survivor testimonials and inspirational breast cancaer survivor stories were one of the keys to my mother's own healing journey. My personal experience is that during and after hospital treatment, the following activities should be tried by any cancer patient, to whatever extent possible: YogaMeditationSudarshan Kriya All those breathing techniques practiced at the Art of Living community helped my mother and even my family to achieve a calm and peaceful state of mind. They flushed out much of our daily Stress. We were able to see things from a different perspective. My mother is now completely recovered from Breast Cancer. Every three months we visit doctors for follow-up. Parting Message for Breast Cancer Caregivers Be the emotional anchor for your loved ones. Try meditation and Sudarshan Kriya, because they give you emotional stability to heal from cancer. You'll realize that everything falls into place automatically.
Dhiman Chatterjee (Blood Cancer Caregiver): Positivity Is A Way Of Life

Dhiman Chatterjee (Blood Cancer Caregiver): Positivity Is A Way Of Life

We take life for granted, but we should live our life to the fullest. We should keep our life simple and enjoy our precious life. Blood Cancer Diagnosis She didn't have any symptoms as such for her Blood Cancer. She had been complaining of fatigue, but we dismissed it as she was busy with her work and regular tours for official purposes. She also developed a headache, which continued for more than a week, and slowly she developed trouble walking also. At this point, we went to a doctor who advised us several Blood Tests. The laboratory called us and said that her sample might be contaminated as her reports were not normal, and we gave the samples again. We went to another laboratory and got the test done, but the next day we got to hear the same thing: there might be something wrong. Her WBC counts were exceptionally high, and our doctor asked us to consult a hematologist. After looking at the reports, the hematologist said it seems like Leukemia. We got a few more genetic tests, and once the reports came, we got to know it was ETP Acute Lymphoblastic Leukemia, a type of Blood Cancer. Blood Cancer Treatment We went to Tata Memorial Hospital in Mumbai, and many of our friends helped and guided us in the process. We were in denial, and we didn't think it would happen because it's the last thing anyone would want to hear. Eventually, we accepted it and got ready to fight. Her Chemotherapy started on 8th March, and later, she started consoling me. I believe we should not lose hope initially; let's start the treatment and go with it. As for side effects due to the Blood Cancer treatment, her platelets, WBC counts and hemoglobin started decreasing. She used to eat papaya to increase the Platelet counts. She used to walk a lot during her treatment. She started having hair fall, so she got herself shaved. She embraced her new look, and I also shaved myself to support her more. Caregivers too suffer a lot on the cancer journey. My wife used to fix a routine, and I had to have my food when she eats anything. She knew that once I skip my meal, it will be skipped for the whole day, so she asked me to eat whatever snacks I could. I used to eat whatever she ate because I thought it would not make her feel alone. The doctor asked us to go for a bone marrow transplantation because that was the best option left for us. We approached stem cell donor banks. I think we should all register for stem cell donation as we can save a life through the simple process. We got a donor, and she got admitted for her transplantation. Bone marrow transplantation is a very expensive procedure, but we managed it anyway. She underwent many things before her transplantation, and then she underwent her bone marrow transplantation in 2019. Everything was going fine, but her immunity was low, and she developed a CMV infection. This infection created havoc in her body. Her counts dropped, and due to the CMV virus and her low immunity, she developed an autoimmune disease. It affected her brain and breathing capacity. She was on the ventilator for two and a half days. Though she was in a BMT ward where no one is allowed to enter, the doctor allowed us to meet her because she wanted to meet her family members. Even while being on a ventilator, she asked me why I was there and not in the office as it was a weekday; that's was her spirit, and she was so active in her work. She could not manage to overcome it, and on 18th January, she left for her heavenly abode right in front of my eyes. She was always very positive and had even kept her WhatsApp status that positivity is a way of life. The doctors and the hospital staff have helped us immensely, and I am very grateful for that. Many beautiful souls helped us a lot, and I can never forget that. I am grateful to every single person who was with us on our journey. Parting Message Be positive, eat healthily, exercise properly, take the medications on time and keep smiling. Enjoy every moment of your life. No one can change what is going to happen but let us make the best of the moment. Caregivers need to take care of themselves too. https://youtu.be/iYGDrBU6wGQ
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