My journey with cancer began long before my experience with my father. My first exposure to cancer was around eleven when my grandfather was diagnosed with soft tissue sarcoma. I remember there was a lot of caretaker involvement, and he went through many medications and treatments. But, the main thing I noticed was that the entire process took a toll on the whole family, not just him. Everyone in the family was suffering in their way.
Fast forward 20 years, and my father was diagnosed with pancreatic cancer. We only came to know about it in the last stage because my father showed no symptoms except for a niggling cough that we dismissed due to his existing asthma condition. But, by the time we took him to a pulmonologist, it was too late to do anything.
Since the cancer was in its final stages, the doctors made it clear that there was no cure to this, but we could plan the best care we could give him. This happened in September 2018; unfortunately, my father lost his battle in February 2019.
Those four to five months were intense because we were trying to figure out the different medicines and therapies we could provide for him. I was too young to understand the process when I watched my grandfather go through cancer. Still, when it came to my dad, I developed this hero complex, where I believed I could get all the necessary medicines and treatments and find a solution for him.
Our reaction to the news
When we first heard the news, we were initially in shock and went into denial. I found all the other diseases that matched his symptoms but were not cancer because he had no pain. I mailed people in Taiwan and Japan because they had put up articles about adenocarcinoma in the pancreas. I also mailed the Nobel Laureates for medicine that year because they had figured out the protein sequence to break down adenocarcinoma.
The entire medical fraternity replied, and the people from Japan confirmed that the diagnosis was correct and the treatment was on the right path. The Nobel Laureates also checked the reports and told us they had not found a way to break down this particular adenocarcinoma.
My father was a Physicist, and his research field was related to MRIs, so he would look at his scan reports and understand what was happening. We would have very open conversations about everything going on and try to solve the problem. But eventually, a lot of things happened, and he had multiple infections during his treatment, and in the end, his heart gave out.
Until 2018, I had been in the US with my husband and kids. In April 2018, we moved back to India and dropped my kids off with my parents. When I went to pick the kids up in August, I could still hear the coughs of my dad that I had heard in April. We checked with our physicians, and they dismissed it as the weather and the pollution, which is reasonable enough.
So, when we got this diagnosis, our family was shocked. Once I had the time to calm down and look at the reports again, I understood the situation and started looking at what we should do next. On the other hand, my mother and grandmother had a very emotional reaction.
My dad had just retired, and my mom was looking forward to spending time with him because both of them had been working and had never had the time before. My grandmother was devastated because she did not want to lose her child. Between them, I was the practical one, who asked what was next and worked towards that.
Treatments we underwent
We looked at treatments that did not involve radiation, and cancer my dad had, started in the pancreas but had metastasized to the lungs and liver. We took a biopsy of his lungs to check if there was any gene therapy that could be done, but there was no match. But in the meanwhile, we had started him on chemo that tackled both the pancreatic and lung cells.
He was on a weekly cycle of chemo and the idea was to give him the chemo for a couple of weeks to check how the cancer was reacting and change the medicine accordingly. Surgery was not an option because the tumor was intertwined with the pancreas.
I reached out to my doctor friend in the US to check if there were any clinical trials for this cancer since there were none in India, but unfortunately, that was a dead end. A few people suggested we try the Simaruba powder, which had anti-cancer properties. I heard many good things about it from people who had stage 1 or 2 cancer. My dad was up for it, and I think it helped him a lot because he had no side effects from cancer and could do his day-to-day things.
Transfusion and surgery
In November, he complained about a sore throat, and I immediately took him to the doctor; he got a transfusion because I did not want him to catch any infections. The day after he came home from the transfusion, he contracted pneumonia and had to be in the ICU for another 26 days. This was traumatic because he was conscious and alone the whole time. By the time he returned, I had converted the home into an ICU unit with all the equipment because I did not want him to return to the hospital.
He was bedridden after that because he had a tracheostomy done and had a tube put in through which he was getting his food, he initially disagreed with the tracheostomy, but the doctors were luckily able to convince him. He recovered from that in a month and started walking with the help of a walker, but his heart was giving out, and I understood that it was only a matter of time before it ultimately gave out.
Emotional and mental wellbeing during the process
It may sound weird, but my pets were my support. I used to take care of them and sometimes even had a conversation with them to get things out of my mind. The hospital did provide a therapist that my mother heavily relied on, and they helped her a lot. On the other hand, my grandmother went down the spiritual path and relied on God throughout the journey.
I was very fortunate to have my husband, who said he would take complete care of the kids, while I focused on my dad. So, in a way, everyone around us found a way to cope with what was happening.
For my dad, we were always around, talking to him about everything we wanted and all that had happened. The conversations were never about death; it was always a celebration. We spoke about memories and simple, stupid things that were going on in life and made sure we made him feel that he was surrounded by love and support.
My learnings from this journey
Most people focus only on the patient and not the caregivers, and this is very important because caregivers go through so much taking care of the patient, and they deserve to take care of themselves too.
Second, it is okay to grieve, but grieving in front of the patient will not help anyone. Take time to process your emotions alone so that you can be of better help.
The third thing is, don’t be afraid to get another opinion if you feel like it.
My message to cancer patients and caregivers
From my experience, I would say that if you’re in this battle, you will be a winner. Even if not physically, at least spiritually. Use the time you have to say and do everything that you want. The doctors will have their opinions, but make sure you know what you want personally and find a balance. Live life without regrets, and don’t feel guilty for what you could have done.