Throughout my life, I have been very close to my father. He was a professor and was loved by all his students. He used to be a very humble person and always treated me as his friend. In August 2019, he had some difficulty breathing, and when we took him to the hospital, we came to know that he had Pleural Effusion, which is the excess of fluid in the lungs. The lungs were completely surrounded by fluid which caused difficulty in breathing. That was when the biopsy reports came in, and he was diagnosed with mesothelioma. At first, we were told that sixteen sessions of chemotherapy would do and later, we came to know that it was a terminal disease. And that he will have to do chemo lifelong. He went through almost forty-one chemo sessions. And in December 2021, we found that cancer had started spreading to the abdomen. It was then he lost his willpower, and in January 2022, he passed away.
I have been with him throughout the journey and have seen him suffer through the pain. And this is a relief for him from the pain. At the same time, he is my dad, and I am still coping with the fact that he is no more.
Family history and their first reaction
He did have a family history of cancer, as his mother passed away due to cancer. I still remeber the day he was diagnosed. We were expecting three results, either tuberculosis, pneumonia or cancer. And we were all praying it to be anything but cancer. We were all in denial, and we were not accepting the diagnosis. And we had to break the news to my father very subtly. However, the biopsy reports came back negative from Tata memorial hospital in Bombay in September, and we were all very happy. However, my father’s pulmonologist, who was treating him, was not ready to accept the negative report. We even fought with the doctor, saying that it was negative. But we finally agreed to a second opinion, and the reports were sent to Apollo hospital in Chennai, which showed a positive report. When we finally broke the news to my father again, he understood but was not ready to accept it.
Treatments and side effects
He was seventy-five at the time, and surgery and radiation was ruled out for his age. He had already undergone a thoracotomy for his lung infection two months before it. And I had raised the concern that it does not matter how long the treatments would take, but it must not cause him much pain. And so, we went ahead with chemotherapy. I was very much prepared to take care of his side effects, but to my surprise, he did not face any side effects except fatigue. I was initially confused as to whether the treatments were working, but then the doctor assured us that as you asked for palliative treatment, we are taking the treatment slowly, and he will not face any side effects. He did follow his dietary restrictions, and the only thing he said during the chemo was that he felt tired and wanted to sleep.
As a Caregiver, how did you balance social & professional life?
On the professional front, I was working with Cognizant and had completed ten years in the company and had the same manager and set of peers who understood my situation and extended their support. I also had very heart-to-heart conversation with my boss and I told him that I would work in a straight manner, but please do not expect anything above and beyond from me now. And with God’s grace, they agreed and supported me during the journey. In my social life, I did not go into a shell or shy away from socializing. I made it a point to have a positive attitude and took my father everywhere, as I did not want anyone to show him empathy or sympathy. And thankfully, everyone accepted us wholeheartedly.
Mental and emotional well-being through the journey
I am, in general, a very carefree person. And my relatives tell me my emotional quotient is high. However, during the treatments, I had a lot of mental stress. And to add on to it, the wave of corona also hit us. And so we did not have any blood donors. I have to thank my wife who was extremely supportive during the entire journey. Like I used to call from the hospital telling her that Appa needed two units of blood, and she immediately called four hundred to five hundred people. To be frank, I do not know how I handled the situation back then. I think I have to say that I just handled it.
Things that helped in the journey
My family was what helped me throughout the journey. My wife, my brother and my sister kept helping me, giving me suggestions and asking me questions. My mother would cook, give us homemade food and helped as much as she could. Apart from that, it was the VS hospitals that I took my dad to. There everyone from the janitors to the pharmacists to the doctors was very helpful. They all used to love dad and used to call him “Appa”, lovingly. They used to ask him for blessings when there is a function or anything.
As for the financial aspect, all my family members who were working at Cognizant and Microsoft were covered by insurance. And so, as we say, God opens another door when he closes one. Even though he gave us a jolt, God provided us with a support system everywhere. And so financially, we were covered by insurance from Microsoft and cognizant, treatment-wise, the hospital and emotionally, my family.
The top three learnings in this journey
As a caregiver, I learned that we need to keep our emotions secondary and should approach cancer from a logical perspective. One must be extremely strong and not let emotions overtake your decision-making. It is also important to ensure that the patient is not affected. Do not fake any positivity or preach to the patient. Always ask their opinion and permission in case they are elder than you for important decisions. Rational and logical thinking should come first, and attachment should come only after that. I feel that this disease should be eradicated and treated like any other disease. There is a lot of stigma around cancer, which should be tackled.
Message to Cancer patients and caregivers
As a caregiver, be logical in your decision. You have to be careful while you talk to the patient and the people around them. Do not show much empathy or sympathy or make them feel like a patient. Act normally around them, and be kind but do not fake kindness. Do not show your pain or agony to the patients. If you are emotionally weak, express it elsewhere, not in front of the patients. Never make them feel alienated. Think of them as normal person who is just a little different than you. Let them behave the way that they want to. You must not react to it.
I would say that no person can tell the patients what to do. After all, it is their pain and agony, no one from the outside can ever experience or understand completely what they go through.
But I would suggest that it would be great if patients distract themselves from the treatments with their favorite activities. Redirect the energy to doing what they love.