Dimple Parmar (Colorectal Cancer Caregiver): There Is Always Hope

If you feel like you’ve lost everything, consider surrendering yourself to the mystic law of the universe and see what unfolds. Losing a loved one can be devastating, and it’s not uncommon for people to lose hope during such difficult times. I personally experienced this when I lost my husband, Nitesh, who had stage 4 collateral cancer. Despite feeling like I had nothing left, I decided to surrender myself to a destiny with an open mindset. I was surprised to discover that life could be beautiful and fulfilling once again. You can read about my cancer-healing journey in the following text.

Index

Beginning of a new life and meeting Nitesh in IIM-Calcutta

In 2015, I enrolled at IIM-C to pursue my MBA. It was there that I met Nitesh, a fellow student in my batch. Despite being a stranger to him, Nitesh opened up to me about his struggles in life, which included problems with relationships, academics, and finances, as well as challenges with his start-up.

I sympathized deeply with Nitesh’s situation. It was disheartening to see someone so young and driven facing such difficulties. From that day on, I made a point to stay in touch with him and provide support as a good friend.

Nitesh was quite focused on his start-up, which he called ‘Appetti,’ and as a result, he had only a few friends at IIM-C. The pressure of both his work and studies had taken a toll on his health, leading to issues like constipation and stomach problems. He often skipped meals and stayed up late at night, and it was clear from the stress on his face that he was struggling.

My Internships in Egypt 

Over time, circumstances began to change. During my internship in Egypt, I lost contact with Nitesh for three months. I had reached out to him for advice on starting a business but received no response.

When I returned to India, I avoided meeting him, assuming that everything was fine in his life. However, he insisted on meeting me and when we did, I was shocked to see how much weight he had lost. He told me about his various health issues, including rectal bleeding, and asked me to accompany him to the doctor. I initially declined, but he went alone and later called me in tears, expressing his fears about not being able to achieve his goals in life.

He asked me to visit him in his hostel, where he was packing his things to leave for Mumbai on the doctor’s recommendation to spend time with family. He gave away his food items and expressed his uncertainty about when he would return.

Dealing with Cancer

Upon reaching his destination safely, Nitesh gave a call to inform his safe arrival. Sensing that something was amiss, I urged him to share if there was anything that I could assist him with.

It was then revealed that Nitesh was battling stage-3 cancer and requested I keep this confidential. Although I was taken aback, I was confident that Nitesh would receive the best medical care and recovery.

Since both Nitesh and I were unaware of the disease, its stages, and the necessary precautions to be taken, he showed great courage in opting for the best possible treatment. He also requested my help with notes, permission letters from directors and professors for attendance, and applying for health insurance worth Rupees one lakh, which was available to college students. While I started researching the subject, I was confident that he would make wise decisions regarding his treatment.

At this point, we were just friends, and I was engrossed in my studies and start-up, which was based in Mumbai, requiring me to travel there frequently. My brother Dilkhush was handling the operations of the company in Mumbai, and I was monitoring them from Kolkata. Although I was always available for Nitesh, I could barely manage 3-4 hours of sleep due to my busy schedule.

A few days later, Nitesh informed me that he could not stay in the hostel for long after returning to Kolkata because it had shared toilets and mess facilities. I approached the college director and requested a separate room for Nitesh. The director himself came to select the best available room for Nitesh in the Tata Hall, a guesthouse where all visitors stay. I was grateful for the director’s remarkable response.

Thanks to the support of students, professors, and directors, we received overwhelming support in raising funds for Nitesh’s treatment. As a result, we were able to afford the best possible treatment for him.

Cancer treatment and its side-effects

In the meantime, Nitesh underwent radiation therapy and oral chemo in Mumbai. He took medicines orally in oral chemo, which had severe side effects. He used to vomit and it was painful. He was unable to sleep. He always preferred to live in a dark room. He tried to occupy himself by messaging through the phone. He did not want to talk to anybody. Sometimes, I felt awkward, as he did not show any interest in talking to me

He returned to Kolkata in August. He was shifted to the Tata Hall, which had a separate toilet. A separate kitchen was also arranged for him. I visited his room, as I used to go to the hostel to attend my class and then I would be back in the evening. We got a term break of seven days during the festival of Raksha Bandhan and Nitesh and I went to our respective homes.

I realized that Nitesh had changed after returning from home. He started noticing things and appreciated them. It was a good feeling for me.

Falling in Love with Nitesh

In September, I faced the challenging task of managing my studies, classes, preparing food, and other chores while taking care of Nitesh, so I started living with him. As we spent more time together, we grew close and eventually fell in love. On October 14th, Nitesh took me on a date where he proposed to me, and we officially started our committed relationship.

However, Nitesh’s earlier surgery was scheduled for October 9th in Mumbai, but he was apprehensive about colostomy, which would prevent him from excreting normally. He returned to Kolkata and spent the Durga Puja holidays with me. During this time, we researched and consulted other doctors, which confirmed that colostomy was the best option. We spent quality time together during this period, which was memorable and allowed us to concentrate on our relationship, health, and well-being.

Nitesh opted for surgery, which was scheduled on October 24th, and lasted for 8 hours with 42 stitches. I was very anxious on that day and stayed in constant touch with him over the phone. After the surgery, Nitesh booked a ticket for me to visit him in Mumbai on November 1st, which was Diwali. I obliged and stayed with him in the hospital for the next four days while he was shifted to the normal ward.

He proposed to me in the hospital

While in the hospital, Nitesh asked me a serious question, “Dimple, you know the truth of my life. I have stage-3 cancer, I’ve had surgery and I have to live with a colostomy bag. My future is full of difficulties. Do you still want to be with me? Do you want to marry me?”

I responded honestly, telling him that I was just his friend when I learned of his situation, but I still wanted to be with him. I explained, “It’s a part of life. What would I have done if you had cancer after we were married? What if you had an accident and lost a vital body part?”

Afterward, Nitesh proposed to me in the hospital and informed his family. I told my mother, who asked about the possibility of cancer relapse, to which I replied that it was unlikely. We didn’t research cancer further, as we believed that the doctors were doing their best and we were following all protocols. Instead, we focused on our academics, startup, and studies, as we felt that we couldn’t do anything more about cancer. Nitesh was advised to take one month of bed rest, but he recovered quickly as usual. As a result, we decided to return to Kolkata.

The second phase of treatment & its complexities

The second phase of Nitesh’s treatment began and I had promised to take care of him, but it wasn’t as easy as I thought it would be. I felt nauseous when the nurse cleaned his colostomy bag, but I tried to control it so as not to upset him. When Nitesh cleaned the bag in the bathroom, the room would have a bad odor due to the gas, which was upsetting. However, I reminded myself of my commitment to him and stayed true to it. After a few weeks, Nitesh started attending classes, even though only half of his treatment was completed at that point, and we found it challenging to manage everything.

It was December, the month when job placements were taking place, and all students were busy preparing for it. While everyone else was focused on their careers, we were dealing with Nitesh’s treatment, which had already been ongoing for six months with another six months to go. We were finding it very challenging to juggle everything at once.

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Chemotherapy and My Birthday 

Nitesh began the second phase of his treatment, which involved chemotherapy. His first cycle of chemo was planned for December 6, which also happened to be my birthday. Nitesh arranged a small celebration in his room with a few friends, and he even gave me a lovely gift. He enjoyed making special moments memorable and capturing them in photos.

Despite undergoing chemotherapy, Nitesh would feel energetic on his treatment days, and he did not experience many side effects during the initial four or five cycles. We found pleasure in spending time together, watching movies every two weeks, and making the most of his chemo appointments, which took place over three days – the first day at the hospital and the remaining two days at home.

He experienced a dreadful week following his chemo treatment. He was constantly irritable and felt nauseous. He had no appetite and was sensitive to light and sound. Even the sound of typing was bothersome to him. He preferred to be alone and didn’t want to speak to anyone. It was challenging for him to cope with these symptoms at such a young age of 25. Just as he was beginning to recover from the side effects, the next scheduled chemo session would approach. 

Finding Joy in Small Things

During Nitesh’s treatment at Tata Medical Center in Kolkata, we would often go to the hospital canteen after his chemo sessions and share a meal of dosa, which was his favorite. Even though the hospital was 70 km away from our hostel, we took precautions and learned how to remove the chemo pump and dress the wound ourselves. It was a challenging time, but we found joy in being there for each other and working together. As I became more aware of his health needs, I started preparing homemade food for his hospital visits instead of relying on outside food. The cafeteria at Tata Medical Center was also a nice option for us to enjoy a meal together. Through these small actions, we found happiness in our daily routines and in supporting each other during difficult times.

Nitesh Adjustment with Colostomy Bag

Adjusting to life with a colostomy bag was a major challenge for Nitesh. Initially, he struggled with self-consciousness and the fear of the bag leaking or getting noticed by others. He would feel uncomfortable and hesitant to go out in public. However, with time and support, he gradually became more confident in managing the bag. He learned how to change the bag by himself and would carry extra supplies with him in case of an emergency. I also provided emotional support and reassurance, reminding him that the bag was just a part of his life now and it did not define him as a person. Slowly but surely, Nitesh became more comfortable with the colostomy bag and was able to resume his normal activities without much hindrance. He even started playing his favorite sports with the colostomy bag, proving to himself and others that he was capable of overcoming any obstacle.

Unconditional Support from Friends

Our friends played a significant role in supporting us during our difficult times. Attendance in college was mandatory, and my best friend Akanksha attended classes on my behalf, took notes for me, and helped me understand the chapters. Despite knowing that it was not the right practice, we had no choice. Some friends even helped Nitesh prepare his resume as he was not in the right condition to do it himself.

We were grateful for the support received from all directors, professors, and students, which was the most significant source of our strength.

Classroom Project and Nitesh’s Craziness for Kite

One of our classroom projects was assigned to Nitesh, Kishan, and me. However, Nitesh was unable to contribute much due to his condition, which made Kishan suggest that I ask him to do his part. When I explained Nitesh’s condition, Kishan felt bad about it.

Nitesh was very passionate about kite flying and visited Jaipur for a week during Makar Sankranti to fly kites and spend time with his family. He even postponed his chemo session to attend the kite festival and was positive about his recovery. We stayed connected through video calls, and Nitesh’s playful nature helped us stay positive.

Another Catastrophe of Life

We faced another catastrophe when I fell off the bed and suffered a minor spinal fracture. As a caregiver, I was now bedridden, and our friends couldn’t offer much help. We went to the hospital the next day, and I asked my mother for assistance. My mother came to help, and despite not knowing much about Nitesh’s condition, she took care of both of us. My father returned home after a few days, but my mother stayed to take care of us as I had not fully recovered and had to prepare for my placement. Nitesh also took care of me during this period.

Balancing between Health and Career

Despite our health is a priority, Nitesh did not want to miss the opportunity for the recruitment process. We balanced our studies with household chores and treatment, but my excellent job offer from a German company presented a challenge. Nitesh and my parents believed that there was no point in staying separately, and I reluctantly let go of my dream job.

Nitesh’s workaholic nature often led him to take his mobile and laptop with him during chemo, which I didn’t like. I wanted him to prioritize his health by following a proper diet, exercise, and mindfulness. Although Nitesh was a bright person and could take care of these things, he was more interested in learning about artificial intelligence. 

We decided to shut down our start-up in March so that we could wrap up our pending work. I had to go to Mumbai for the winding-up operations and left after Nitesh’s mother arrived to take care of him.

Valentine’s Day Celebration with Nitesh

On Valentine’s Day, I had a special celebration with my mother and Nitesh in Kolkata. We went to a mall where Nitesh had arranged everything for the visit, making it a memorable experience. I was still recovering from my treatment, but spending time with Nitesh and my mother made me feel better. Unfortunately, a few days after our celebration, my mother had to leave for Jaipur. She was worried about leaving me alone to do the chores but also felt bad for Nitesh, who was undergoing chemotherapy at the time. However, Nitesh didn’t want her to be around during his treatment, so we agreed that it was best for her to leave.

Joka Me Roka (My engagement inside the IIM-Calcutta campus)

Our convocation ceremony was scheduled for April 1st, and Nitesh’s mother suggested that we get engaged, as both our families would be present. Although Nitesh was initially hesitant, he eventually agreed. Our engagement took place in hostel room number 213, which holds a special place in my heart. I used to tell Nitesh that I would like to return to the hostel and visit the room to relive the memory.

It was a beautiful moment that brought our families together, and we were excited about the future. However, I had to leave for my job in Pune after the convocation, and Nitesh’s family didn’t allow me to visit their place before our marriage. Despite this, we still planned to meet at his home, which remains one of my best memories.

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Beginning of Career with BNY Mellon

After moving to Pune to join the Bank of New York Mellon, I was feeling better as Nitesh’s treatment was almost over. We were both planning to start a new journey together and get married within a year.

However, Nitesh never shared all his thoughts with me. Although we were committed to each other, he didn’t disclose our relationship to anybody. Regardless, I was focused on my career and enjoying my new job. It was a new chapter in my life that gave me hope for the future.

Worst Moments of My Life

Nitesh went to Mumbai for a check-up after completing his treatment in Kolkata and Jaipur. I asked him to come to Pune before leaving for Singapore, where he had been working. He teased me that he might not come or would come late, but eventually, he did come.

Unfortunately, he had some bad news. He informed me that he was planning to get married in six months to a year and showed me his MRI report, which showed metastasis in his lungs and stomach, indicating the fourth and last stage of cancer. This news was a big shock to us, and we were feeling hopeless and clueless. I called the doctor for more information and sought her guidance, and she advised us to come to Mumbai immediately to get a better understanding of his condition

I informed my manager at the office about some bad news and requested leave to travel to Mumbai. He provided me with some words of comfort before Nitesh’s Mama Ji, Mami Ji, and their son joined us in Pune for the trip.

The news had come as a shock to everyone. We decided to take a break in Lonavala, during which I was texting a friend, Akanksha. I tried to keep the chat content hidden, but Nitesh managed to read it. Despite the distressing news, he remained optimistic, and we didn’t talk about his health.

After reaching Mumbai, I contacted Nitesh’s doctor and requested a meeting. Even though Nitesh was unable to attend, the doctor agreed to see a member of his family. During the meeting, the doctor explained that Nitesh’s condition was in the fourth and final stage and that he couldn’t be informed directly. The doctor illustrated the parts of his body that were affected, including his lungs, pelvis, abdomen, prostate, tailbone, and other organs. I was baffled when I asked how it could have happened again, considering he had just completed treatment a week prior. The doctor explained that the MRI test was not part of the protocol, but she recommended it as a precaution since he was heading to Singapore. The MRI test is typically performed between 3 to 6 months after treatment.

I asked about Nitesh’s chances of survival, to which the doctor responded, “If the medicine works, then there is a 10% chance for his five-year survival. It cannot be more than five years. However, Nitesh was likely to survive only six months, and it would be a miracle if he lived for two years.”

Meanwhile, Nitesh had called me to tell me that his PET test was done, but I couldn’t bring myself to speak to him. My love was slowly slipping away from me, and I broke down in tears at the temple inside the hospital. I didn’t want to cry in front of him, so I didn’t tell him anything about the diagnosis. He asked what happened, and I lied, saying that his treatment had ended just a few days prior and that it was concerning that things had started up again. Nitesh took it casually, saying that he was exhausted and wanted to go home. I could tell that he was completely drained.

Once we arrived home, he slept while I called his Mama Ji and showed him the doctor’s sketch. We both cried before Mama Ji left for work, and we met later in the evening to discuss the next steps. The doctor had suggested conducting a biopsy of his lungs, which required a visit to another hospital as it was a risky procedure. I received permission to be with him during the biopsy to check the number of cancer cells presents in his lungs. Although the biopsy report was expected to take fifteen days, we were anxious to start treatment as soon as possible. Despite the doctor’s assurance that a delay of 3 to 4 days was typical, we were emotionally, mentally, and physically drained from the ordeal, as was Nitesh.

After moving back to Pune, I made it a point to visit Nitesh every weekend. I was desperate to find any medicine that could cure him of his disease, even if it meant looking for options from around the world. Through some cancer patients in the US, I learned about advanced genetic testing, which had not been suggested to us in India. When we asked our doctor about it, they said that it could be done but it may not make a significant difference. And true enough, the testing did not yield the desired outcomes.

Determined to find a solution, we conducted more tests and sent the reports overseas for examination. We wanted to do everything possible to ensure Nitesh received the best possible treatment. But before starting any treatment, we had to wait for all the test reports to come in.

Nitesh’s Last Birthday

I can still vividly remember Nitesh’s last birthday, as it was an emotional and challenging day for all of us. We were all aware that the second round of his treatment was about to begin the following day, which made the day even more difficult. Nitesh appeared exhausted, and we couldn’t talk much. I had so many questions for him, but I lacked the courage to ask him anything. I wondered if there was anything he expected from me that I wasn’t already doing.

To celebrate his birthday, I invited his friends from IIT, Kanpur. We put on brave faces, but deep down, we all knew that this might be his last birthday. We were all silently crying, and despite doing many things, such as fundraising, taking care of him, and undergoing treatment, we still couldn’t shake off the feeling of helplessness.

As a caregiver, I was always worried about Nitesh’s well-being, but I couldn’t help but feel overwhelmed by everything that was going on. Nitesh’s brother, Gautam, made a beautiful video, which we all watched together, and although we smiled, we all knew that this was a difficult time for Nitesh and all of us.

Creating a Support System

During this challenging time, I knew I needed support. So, I reached out to Nitesh’s best friend, KK, who was also from IIT, Kanpur. We created a group with all his friends, trying to build a support system that could help us through these trying times. I tried to keep all of this hidden from Nitesh, but he eventually found out, and we didn’t discuss it further. Our home became silent.

Nitesh was already in the fourth stage of cancer, which made the treatment even more challenging. He was always occupied with either watching TV, working on the computer, or sleeping. We had our disagreements, but as a patient, he had his own perspective, which I had to respect.

As his caregiver, I felt that it was my responsibility to take care of him, but as he progressed to the fourth stage, everything became more challenging. During one of our visits to the hospital, Nitesh confided in me that he wished someone could guide him and attend to his needs. I promised him that I would always take care of him and take the lead in everything, from surgery to chemotherapy and radiation.

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Chemotherapy and its Side Effects

It was time for Nitesh to start his next treatment, so we decided to shift to Pune as it was less polluted than Mumbai, and Nitesh wanted to practice pranayama and yoga in the open air. We faced many challenges with his doctor in Mumbai as we were exploring some lifestyle changes for him.

The transition from stage 3 to stage 4 cancer was quite challenging. In the third stage, Nitesh was taking care of himself and his treatment, and my role was limited to cooking and arranging study material for him. We were optimistic during the third stage, thinking that everything would return to normal after chemo sessions.

But things were different in the fourth stage, and I had to take on all responsibilities. During a visit to the hospital, Nitesh told me that he wished someone would guide him and attend to his needs. It was the first time in his life that he felt this way. I promised him that I would always take care of him, and I did everything I could as his caregiver, from arranging supplements to sending his reports to doctors worldwide.

The side effects of stage 4 cancer were unbearable. Nitesh had around 40 mouth sores, making it painful for him to drink or eat. He bled even if he ate anything, and his body, including his scalp and back, was full of blisters. He was quite unhappy and did not want to talk.

I did my best to support him and maintain his routine, but we had to change his oncologist because the previous one told me to stop trying as he thought Nitesh wouldn’t survive. Despite the challenges, I never lost hope and continued to do everything in my power to help Nitesh fight the disease.

Marrying Nitesh – My Only Hope

I was determined to marry Nitesh and save his life, drawing inspiration from the story of Sati Savitri who brought her husband back from death. I shared my decision with my parents and others, and to my relief, everyone supported me. Although my parents had some concerns, they knew that I was resolute in my decision. Nitesh, on the other hand, was not ready for marriage, but I convinced him to go ahead with it. For me, our marriage was the last hope to save Nitesh, and I believed that God would help us.

On our wedding day, however, Nitesh received a text message from a friend who warned him against marrying me. The friend had spoken to several doctors who had given Nitesh only 4 to 6 months to live. But I didn’t want Nitesh to change his mind. I urged everyone to ignore the message and we proceeded to the temple for our wedding ceremony. The rituals took about two hours, but Nitesh was in pain throughout, finding it difficult to sit through them.

A New Journey Full of Ups & Downs

I was searching for hospitals in the US for Nitesh’s treatment, but the process was far from easy. There were numerous rules and regulations to follow, and the cost of treatment was a significant factor. It became clear that we needed more people to support us on this difficult journey. Through our networks, we gradually connected with IIT and IIM alumni who offered us invaluable support, especially once we arrived in the US.

Eventually, we decided to pursue advanced treatment in the US. We contacted survivors who had faced same cancer that Nitesh had, and their experiences gave us hope. However, we needed confirmation from doctors in the US before we could apply for a visa. Fortunately, we received a confirmation from MD Anderson Cancer Center just one day before our visa appointment.

We booked our flights to the US, but there was a major obstacle in our path: Hurricane Harvey. The cyclone caused significant disruption to the area where we were supposed to stay, and our journey took 36 hours instead of the usual 24 due to layovers in Istanbul, Chicago, and San Francisco. Nitesh’s condition was deteriorating rapidly, and it was a challenging journey for us.

Nitesh’s friend Rahul met us at the airport and arranged for our stay at an Airbnb for the night. We moved from one friend’s place to another, as we didn’t want to impose on any one person for an extended period. Jagan was one friend who offered us vital moral, mental, and financial support.

Unfortunately, our appointment at MD Anderson Cancer Center was cancelled due to Hurricane Harvey, which was a significant blow. We had to start over from scratch, and we anxiously waited for a new appointment. One of the biggest challenges was selecting the right clinical trial from the thousands being conducted in the US. However, being in the US gave us the opportunity to call different hospitals for information, which was not possible back home in India. Despite the difficulties, we were grateful for the opportunity to focus solely on Nitesh’s treatment, as we didn’t have the same hectic schedule we had in India.

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TO BE CONTINUED…