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 got 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.
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 is nothing to worry. I reassured him the same, and I was glad that we’re on the same page.
I told him about the doctor I wanted to get treatment from and tried to fix an appointment. But 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 is 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 is the only question I have 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 colors.
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 can 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 anesthesia, 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 the medicines, and maintaining a proper schedule. On the other hand, caregivers must give love, support, care, and empathy to the patients.