When the going gets tough, the tough get going

The first time I noticed a change in my voice quality was in March 1997. My voice had become hoarse and I was not able to speak even a single word. I consulted an ear–nose–throat specialist who told me that I had severe allergy. He prescribed antihistamines and antibiotics and advised complete voice rest. A few weeks later, my voice became normal. Every few months, the hoarseness would return. Each time I was given a prolonged course of antihistamines and the cycle continued for many years. The hoarseness was acute, and I felt I would lose my voice. It was the year 2000 when the doctor advised an endoscopy to check my vocal cords. I was told that I had nodules on my vocal cords and this caused hoarseness in my voice. Taking antihistamines became a ritual. Alongside, I also experienced gastric discomfort, excessive fatigue, and mood swings. The doctors kept telling me that I was paranoid. My menstrual cycles were erratic, and I suffered a near-fatal miscarriage. Time flew and the years went by. A COINCIDENTAL DIAGNOSIS Being married to an army officer meant moving every 2 years. In 2007, we moved to a remote area in the Northeast of India. Fatigue, voice change, and gastric discomfort had become a part of my life. In 2009, while applying moisturizer, I felt a big hard lump on the left side of my neck. I went to the local army hospital, where I was told that I may have goiter and I should not worry much. This put my mind at ease. My daughter was on vacation and we traveled to Delhi. A family friend who is a doctor advised an urgent consultation with an endocrinologist. The meeting with the endocrinologist changed the course of my life. He advised a fine needle aspiration cytology (FNAC) of the lump. He also advised a thyroid scan. He explained why both procedures were needed. After getting FNAC, I got the thyroid scan done. The scan report mentioned that the 4-cm lump was a cold nodule. A few days later, the FNAC report was handed to us. It advised an excision biopsy. Reading the word biopsy made me dizzy. It took some time to return to my senses. We met the endocrinologist, who advised urgent surgery. On hearing this, my husband and I rushed to the defense hospital, where we met a surgical oncologist who advised immediate surgery. Upon reflection, I actually felt numb when I first heard about this. My mind was numb, and my emotions froze. My family was in utter disbelief. I was operated upon on June 29, 2009. I underwent a hemithyroidectomy. As I was regaining consciousness, I tried to speak. Instead of a voice, I uttered a croak. I was still under the effects of anesthesia, but I remember the panic setting in. The surgeon told my husband that during the surgery, my vocal cords were accidentally touched and I may never speak again. I was advised complete voice rest. I went into a shell and shut the world out. I did not know how to cope with this. Since I could not speak, I was not able to express my anguish to anyone. I croaked for over a year. I had to undergo speech therapy. Although I regained the ability to speak, the left vocal cord has been permanently damaged. I suffered from voice fatigue. Just like excess exercise is tiring for a human body, talking for long tired my voice. I had no choice, but to adapt. Post-surgery, the biopsy confirmed that I had thyroid cancer. I was diagnosed with follicular carcinoma with Hurthle cell changes. Within 5 days of the first surgery, I was scheduled to undergo a second surgery, in which I underwent a complete thyroidectomy. Two days into my second surgery, I developed something very scary. My body started stiffening like a dead log. It started with numbness in my legs, my eyelids started twitching and, I felt a needles-and-pins–like sensation on the tip of the nose and on the cheeks. I was very sacred. My husband spoke to the surgeon, who asked us to rush back to the hospital. As we got into the car, I remember vividly that my mother handed me a carton of juice and I could not hold it because my fingers had stiffened. As the car moved, the stiffening in my body increased. I could not shut my mouth, my tongue rolled up, I could not blink, my eyes were wide open, and my cheeks sunk in. I was slipping into rigor mortis (what happens to a human body after death). I was experiencing death while being alive. I remember telling my husband and my young daughter that it was all over. Thinking of what I experienced brings tears to my eyes even after so many years. I knew I was dying. At this time, I was transported back to the time when as a child, I would sit in my father's lap and recite the Gayatri Mantra. Although my body was dying and my thoughts were fading subconsciously, I started reciting the Gayatri Mantra. My last memory is that of my husband pulling me out of the car and then I passed out. When I regained consciousness, I found myself in the emergency room of a hospital with an intravenous (IV) attached to my arm. The doctor on duty walked up to me and said, "You are very lucky. You had suffered a cardiac arrest, but we were able to revive you as you reached in the nick of time. A fraction of a second later you would have been dead." I believe it was the power of the Mantra that saved me and also the love for my daughter that did not let me die. Around 40 min later, I was back in the hospital where I was being treated. On reaching, my body started stiffening again. I was rushed into the ward, and multiple IV lines were attached to my arms. I had no time to register what had happened to me. The fact that I had died sunk in a few days later. I had lost my voice, I had died, my child saw me die and, I had no idea how this impacted my husband, my parents and my brother (who were there by my side always) – so much had happened. Emotionally, I was numb. My entire family needed to be emotionally supported. Unfortunately, we were not given any counseling support. Our emotional health was a mess, but it was not addressed. I was told that my parathyroids were probably damaged during surgery (only two had been removed), and that my body no longer produced calcium. Post-surgery, I had no thyroids and no parathyroids. Four days later, I was discharged. I was told that to survive, I had to be on a heavy dose of calcium and calcitriol all my life. If I missed taking calcium for a day, I would die within 24-48 h. My mind could not process so much. I kept thinking, "Am I dreaming? This can't be happening to me. This must be a bad dream. I have to wake up." But the reality was different. I had no choice, but to accept whatever was happening. So much had happened and the cancer treatment had not even begun. I now had to prepare for the I-131 scan. Adjuvant radioactive iodine (RAI) was to be performed 4 weeks later. Before the ablation, I was advised iodine restriction, and Thyronorm tablet was not started since thyroid stimulating hormone (TSH) levels had to be high to get an accurate scan. During this 1 month, my TSH went up to 150 and I had severe symptoms of hypothyroidism. A month later, I was ready for the scan. A marker dose of RAI in capsule form was given to me. After this, I had to be in isolation at home since my body was radioactive after ingesting the capsule. Two days later, I underwent the scan. Some thyroid cancer cells were remaining in my body, and I had to undergo radiofrequency ablation. I drank a liquid, which I was told was a large dose of RAI. This made my body highly radioactive (I felt like the leak at the Chernobyl radioactive plant), and I was hazardous to all living forms. So, I was moved to an isolation room in the hospital. I was not allowed any human contact; I had to use a separate bathroom; the housekeeping staff would leave the food outside the door, which I could open only after they left. I felt very uncomfortable, my appetite was very poor, I suffered from brain fog, and had a metallic taste in my mouth and a strange sensation all over my body. I was vulnerable and lost. Four days later, I returned home. For the next 5 years, the scans continued. The cycle was repeated every time with the marker dose. I had to stop Thyronorm; TSH would shoot up to over 100 and I suffered from severe metabolic problems due to hypothyroidism. I remember once the treating endocrinologist told me, "Such a high TSH can cause cardiac problems and you may go into cardiac arrest." My brain was numb, and the voice gone. Before my body could recover, I had to prepare for the next scan. Thrice it was suspected that the cancer had metastasized to the bone, so I had to undergo bone scans, but fortunately, it was a false alarm. All this took a heavy toll on my physical and emotional health. I was slipping and losing control of my life. After 5 years of being diagnosed, I took one of the bravest decisions of my life by reaching out to a psychiatrist. I was under her treatment for 2 years. I am very proud of myself for doing so. This helped me regain control of my life and helped me build a new normal for myself. I encourage everyone reading this to not feel ashamed of seeking help when you are going through emotional upheavals. All this has caused much damage to my body. I have suffered two fractures and have been cautioned not to take falls. I suffer from uncontrolled asthma, the digestion is supported by medicines, I suffer from unexplained bone pains (I have been on a daily dose of tapentadol 150 mg for the last 3 years), and I am on a heavy dose of calcium and calcitriol to survive. I have lost track of how many times I have been screened for cancer. However, I have chosen not to let all these hardships take away the joy of living from me. I got the best treatment available and have been very fortunate to be under the care of excellent doctors. However, my family and I did not get the much needed emotional support from an expert. What I did not get, I wanted to give to those who had been diagnosed with cancer. This became my purpose in life. I upskilled myself and did various courses in different modalities of counseling. I trained specifically in cancer counseling, palliative care and end-of-life counseling. I joined a non-government organization (NGO) and have worked as a volunteer counselor at the Tata Memorial Cancer Hospital for many years. All this has been on a pro bono basis. Cancer changed the trajectory of my life for the better. Today I walk the path of my calling by supporting those who have been diagnosed with cancer. By giving a bit of myself to those who need support has given a new meaning to my life. I am also a very passionate patient advocate and believe that advocacy should be an integral part of cancer treatment. Though the journey so far has come with its own set of challenges, there are some days when I get upset and sad dealing with all the health issues, I remember that I am still alive. Moreover, there cannot be a bigger blessing than the gift of life I have been given. I will die when it is destined; till then, I will continue to walk the path toward fulfilling my purpose. Cancer has been my teacher, and I have learnt the following life lessons along my journey: Impossible is for those who do not believe in themselves. Keeping my limitations in mind, I live life to the fullest. Do not let your thoughts control you, learn to control your thoughts. In the book The Last Lecture, the author writes, "You can't change the cards you are dealt with, only the hand that you play." And this has become my life mantra. Thinking about why all this happened is a waste of time, as I am not going to get any answers; therefore, why dwell in the past? Acceptance can help in healing. There are things that I cannot change, but how I manage the challenges is what matters. Self-love has to be prioritized. My husband, daughter, mom, brother, sister, dad, and even my dog, all have been a huge support to me, but I would say it is 50% of their support and 50% of my own will. I believe, irrespective of any disease, we should take care of our bodies. A good diet and exercise are very important. Its okay to be not okay. Mental health is as important as physical health. Do not be ashamed to seek help. Death is an inevitability, no one can escape it. Do not let the fear of death prevent you from enjoying the gift of life. Cancer is a disease, not a war. Some survive and others do not. There are no winners, and no one loses to cancer. But each one who has been diagnosed is a hero in their own right. About the patient and the author Vandana Mahajan is a woman who cherishes all roles that she has donned. She is the daughter of an army officer and married to an army officer. She takes pride in being a mother to her daughter and dogs. She believes life is a gift and should be celebrated. She is a very passionate patient advocate and has devoted her life to cancer care. Professionally, she is a cancer and palliative care counselor. She is associated with the Mumbai-based NGO, Cope with Cancer-Madat Trust. She works as a volunteer counselor in the thoracic disease management group at the Tata Memorial Hospital and also provides cancer counseling across India via online platforms. She was felicitated in 2023, by the President of India, for the work she does in cancer care. She is a cancer survivor too! E-mail: email protected Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.