Blog by Mudita Chaturvedi Tirkar
Mudita Tirkar is 39 years old and is an Associate Director, Marketing & Communications at actyv.ai and is based at Bengaluru. A senior communications professional with over 16 years of industry experience with leading corporate houses and global conglomerates spanning a range of sectors, she has well-rounded experience across all facets of corporate communications and brand strategizing. On a personal level, Mudita has a strong penchant for reading and music and actively pursues sports such as tennis, badminton and table tennis. Animal welfare-rescue and Diversity & Inclusion are topics that she feels passionately about.
Just like all important events in one’s life, terminal illnesses impact not just the person but the family as a collective. In 2021, my Dad was diagnosed with Stage IV Lung Cancer in 2021. In this stage, the Cancer spreads to other organs or parts of the body. It is also referred to as metastatic or advanced cancer. In my Dad’s case, it metastasized to his brain, his bones, his lymph nodes and later, to his liver. My Dad passed away in 2022 and as was his style, he taught us some immeasurable lessons.
The sole intention behind sharing “our story” is with the hope that it might help someone else.
Due to the ongoing pandemic, I wasn’t able to visit my parents for over a year. In July 2021, when I finally did get to see them – something seemed wrong with my Dad. He was complaining of muscular pain in his back and wore a neck brace all the time. He was sleeping nearly all the time and his meal portion size had come down to ridiculous levels. The doctors felt that it’s a spasm in the trapezius muscle and put him on pain killers and physio therapy. However, a month later, there was little relief. The potency and dosage of the pain killers was increased, but that didn’t help either.
A month later, when my Dad visited his regular GP, the doctor noticed that he was walking in a slightly lopsided manner. He immediately told Dad to get a Chest CT scan and a Brain MRI. That night, a lab technician gave us one of the worst news that we could imagine – lung cancer with several lesions in his brain. I wish I could show you the lung X-ray but once you see it, you can’t unsee it. By then, the left lung was completely affected and the right lung had increased in size to overcompensate for its failing counterpart. It turned out that his upper back muscular pain was actually the cancer taking a hold over the trapezius muscles.
A part of our shock came from the fact there were no direct symptoms that we could have associated with cancer, especially lung cancer – no coughing, wheezing or shortness of breath. As I read up further, I got to know that cancer doesn’t always announce itself through tell-tale signs.
Right till we learned of the disease, my Dad was able to get dressed on his own, was of lucid mental state – in fact, he was the chairman of the building they lived in and managed its day-to-day affairs, could hold an intelligent and incisive conversation, appreciate a good glass of whiskey and Beethoven’s symphonies, mobile enough to play with his grandchildren.
The first instinct was to obviously ask questions like – “what is his cancer stage, how much time does he have?” but honestly, the time estimate you get is as per the law of averages. At Stage IV, an oncologist can’t tell you if it’s a few weeks, a few months or a year. We were told that he had “about a year” but in the end, we had less than half of that time.
As part of treatment, the first step was to start radiation for the brain to reduce the lesions to ensure that he wouldn’t suffer from any fits or seizures. I have seen two cases of cancer in my family and I feel that between radiation and chemotherapy, the former is always the more aggressive one. Your body goes through an unforgiving cycle of treatment on a daily basis. His appetite went down which was followed by a loss of body strength, which in turn led to periods of disorientation in him.
By the time, we rolled him in for his first round of chemotherapy and immunotherapy via intravenous, his body was very weak but we were still hopeful. By the time, we were pacing ourselves for the second round of chemotherapy, the medical team we were working with advised against further treatment. His body simply couldn’t take more.
Around the same time, I got in touch with a cancer coach to discuss my Dad’s case – the pros and cons of chemotherapy vs palliative care. Today, I cant thank this lady who gave me what I needed most – impartial yet helpful advice. Our focus moved from treatment to enhancing Quality of life (QOL) through palliative care and nothing prepared us for what the disease brought forth in all of us.
My Mom, an ex-school teacher known for her no-nonsense outlook took up the role of managing his physical and practical needs on a day-to-day basis.
My brother and I tried to down play the seriousness of the situation in front of our parents by avoiding the use of words like “advanced stage” or :Stage IV”. In hindsight, even though he figured out what was happening, maybe we should have had a clear conversation with him so that he had more time to put his affairs in order.
As for me, I always thought of myself as someone who would pick up a problem and try to fix it. I believed that if I really gave it my all, I could make things happen. In those months, I learned that there are things that you simply can’t fix. By letting go of my obsession to get him treated, I wasn’t giving up on him.
In the end-of-life stage (EOLS), a personal touch used to help more than anything else. Little things would convey that we were listening to his needs and wants – these could be around physical or mental comfort. For instance, at some point my Dad told me that he was bored of looking at the same flower pot and digital clock that was kept near his bedside so I made a few changes, or when he mentioned that the kurtas that he usually wore had become cumbersome to change into, I bought him oversized t-shirts. My Dad would visibly perk up if one of our relatives comes over to meet him.
We set up a hospital bed to ensure Dad was as comfortable as possible, but that only addressed part of the caregiving infrastructure and support. What mattered most was the atmosphere of the room. We never moped in front of Dad, we cracked jokes even though he couldn’t or didn’t respond, we didn’t correct him when he would say “good morning” in the night, instead we would just respond back with a “good morning” and move on to the next chore.My Mom would sometimes sing to Dad, in the hope that he enjoyed his “personal playlist”. It wasn’t easy to do this on a day in day out basis, but she kept at it.
I guess each family has their coping mechanism – embrace it. While waiting at the OPD, my brother and I would use humour to calm ourselves, break down after coming out of the oncologist’s room and once we reached home, play out the bleak update to the rest of the family as something we just needed to deal with.
When someone would ask how Dad is doing, I was never sure how to respond. Was he in a good condition, no. Was he getting better, no. But we were taking everything one day at a time.
Slowly, good and bad days became relative in definition. On a given day, if he had a full meal, it was a good day. If he listened to hanuman chalisa or suprabhatam without falling asleep, it was a good day. If he was able to say a few words or even smile, it was a good day. There were other days too. He couldn’t talk, move and while his brain could still understand what was being said or occurring, he couldn’t express himself. For an IIT Bombay alumni, someone who always loved Mathematics, who wanted to start his own Maths tuitions because he genuinely wanted to spread a love for the subject, such days were wretched in every way.
During his recuperation from chemotherapy, I would push my father to do things – “normal things” like picking up his spoon and to eat on his own. I was told by the physiotherapist that Dad had the strength to do everything but he was just being stubborn about it. So during physio sessions, I pushed him more. Looking back, this is one of my biggest regrets. I now know that his body simply couldn’t perform these tasks. Even well-meaning doctors don’t always know everything.
I had to accept that his body couldn’t cope, the treatments were very aggressive so he was undergoing a lot, that we could unknowingly jeopardise his life by being stubborn about treatment. The only thing that was driving him to still try was the love that he felt for us. Most importantly, he had led a life of dignity and he deserves nothing less than that now.
My Dad, Mr Kaushal Kumar Chaturvedi passed away at the age of 75, surrounded by his family.
I once read that hindsight is 20/20. In the midst of a vortex, we think that we can manage everything that life throws at us – but no matter how much one hears about the disease and the war it wages, there are somethings that mentally, we are simply not equipped enough to handle. Reach out.
We try and do what we feel is best for the person who is going through the illness but sometimes, even the best of intentions don’t convert to positive outcomes. Due to the ever-increasing number of cancer cases, India is evolving to the needs of cancer patients and their families. There are palliative care counsellors, doctors and cancer coaches who help not only the patient but also help the family cope with the situation. Reach out.
If you are going through something similar, there are qualified, professional people who can help you, in the right way. If you feel you got this, I would urge you to re-evaluate how you feel and seek help. I sought counselling and I am glad that I did. It not only helped me cope back then but provides succour even today. During this journey, I came across quite a few good Samaritans and from surprising quarters. Thank you.
Everyone’s experience of cancer is different—but there is no bravery in trying to do this alone. Reach out. Just reach out.