Mr. Mohammad Rizwan and his wife, Mrs. Sana Rizwan with their young son lived in Gujarat, India. Rizwan was struggling to maintain a work-life balance. That’s when a job opportunity in Punjab (northwest India) came as a blessing for the family. In 2021, they all relocated to Bhatinda, a town in Punjab. Life seemed perfect.
“Life is what happens while you are making other plans,” a wise man once said.
Life had some other plans for this family too. A few months later, Sana complained of pain in her right leg. She visited a few doctors who prescribed pain medication and some supplements. Sana felt better. At the same time, Rizwan had to go on an official trip. His 6 year old son and Sana accompanied him. While they were in Jodhpur (central Rajasthan in northwest India), Sana experienced excruciating pain in her leg. They consulted a local physician who advised some blood tests for Sana.
The test reports were all normal. The physician yet again prescribed supplements for Sana. The family then moved to Gujarat (west India) for Rizwan’s work. Rizwan shared, “My son and I had fun, but Sana refrained from accompanying us. She was in a lot of discomfort and pain.” After 2 weeks, the family returned home. Two days later, when Rizwan was at the office, he got a call from his son who was sobbing. Rizwan spoke to Sana, who too was crying. She told him that the pain in her leg had become unbearable. In Rizwan’s words, “Sana never complains. She can withstand discomfort without any fuss. For her to tell me that she was in pain meant that something was seriously wrong.” Rizwan immediately left for home. On reaching, he took Sana to the local medical center where she was given an injectable medicine to relieve her of the pain. Unfortunately, even this did not help. The local physician advised her to go to the city to see some specialists. Not wanting to waste any time, they drove toward the city. It was the 6th of December, a cold winter day in Punjab. Rizwan was now anxious. They left their son with a neighbor. “Sana’s condition was deteriorating. She was crying in pain and was nauseous. I didn’t know what to do. Every time I saw her, I also wanted to cry. But I had to keep calm. I kept talking to myself and reassured her that she would be fine.”
Rizwan added that as a caregiver, the first big hurdle was to decide which hospital to go to. No one had diagnosed her problem. Rizwan was confused about whom to consult. They went to a multispecialty hospital where Sana was admitted under a neurologist. A chest X-ray and magnetic resonance imaging (MRI) of the spine were advised, which revealed, as per the doctor, a bulge in the lumbar vertebrae (bones of the low back) but the doctor was very surprised because the bulge was mild and should not have caused such severe pain. Sana was admitted for 2 days where basic treatment was given, and she was advised physiotherapy. The pain was under control. Although the chest X-ray had been done, no one had reviewed it. Before discharge, Rizwan requested the doctor to see the X-ray once. After reviewing the film, the doctor told Rizwan of some unusual spots in her lungs, and suspected it to be tuberculosis. A computed tomography (CT) scan was advised. While Rizwan and his son were eating lunch, he received a call from the radiology department. They suggested administering contrast dye before the CT scan. The first thought that came to Rizwan’s mind was that the hospital just wanted to make money. Sana had no symptoms such as cough, breathlessness, or any other symptom that could suggest a problem with the lungs. He said “no” to the contrast CT. The consultant doctor counseled Rizwan and explained the need for the contrast CT. After the scan, he went to see the doctor who said that Sana did not have tuberculosis, instead, she may have cancer. Rizwan was taken aback. He choked up with tears when he shared this with me. “Cancer…..how could it be? A shiver went up my spine. She was only 31 years old and except for pain in the leg, she had been very healthy,” he added.
Sana was advised to undergo a fine needle aspiration cytology (FNAC) of the tumor in the lung. They met the pulmonologist at the hospital who explained the procedure. He said that during the FNAC, there was a freak chance of the lung getting punctured. Rizwan was now scared. He called his company doctor who suggested that the FNAC should be done at a big hospital, preferably in Delhi (north India). With this new development, the pain in Sana’s leg seemed like a very small problem. Rizwan was very upset with the hospital because had he not insisted on the X-ray being reviewed, the doctor would have never looked at the X-ray and Sana’s cancer would not have been diagnosed. He said that caregivers across the world face many similar situations that make them feel helpless. To date, he doesn’t know what prompted him to ask the doctor to review the X-ray, but he is thankful to God that he did.
By now, Rizwan had many questions on his mind and was thoroughly confused. While he was struggling to decide what to do next, a family member suggested that Sana should take homeopathic medicines from someone based in Lucknow, India. Rizwan was told that this homeopathy doctor had successfully dissolved many such tumors with medicines.
Many of his well-wishers reached out to him. He shared, “All cared for us. Now the question was: Whose advice should I follow? Finally, I decided to go ahead with the homeopathic treatment. I reached out to the doctor who promised us that within 3 months, the tumor would be dissolved. This was very reassuring for me. Lots of people also told me that once a ‘cut’ has been made for FNAC/biopsy, the cancer would spread. So alternative treatment seemed like a much better choice. Sana had no symptoms, so I thought we should go ahead with the present plan.”
Rizwan added, “Many times the caregivers are scared or apprehensive to reach out to friends and families thinking that nobody would want to hear their sob story, or the taboo associated with cancer will isolate them from others.[1] There are so many myths surrounding cancer that I didn’t know what to do.[2] For a caregiver, this is the most difficult time-who to believe and who not! But I thought I should reach out to as many people as possible. I got a lot of unwarranted advice, but as luck would have it, I ended up calling someone who gave me the best advice to date and encouraged us to go ahead with the FNAC. We went to Delhi to get the FNAC done.” At this point, Rizwan got emotional and said, “Only I was accompanying Sana for the FNAC. We were scared. Through my story, I want to tell the world that even though families like mine who are going through trying times don’t verbally seek help, having friends and family around us can be a big moral support.” They reached the hospital and Sana went in for the procedure. “I kept thinking of the worst. I felt alone,” said Rizwan, his voice heavy with unshed tears.
The procedure went well. They left for their home. Two days later, Rizwan received the report on his mobile. He was driving back home from work. He stopped his car and opened the message to read the report. “Carcinoma-that word was like a bullet through my heart. I started shivering. I was alone in the car and didn’t know how to react. My Sana has cancer!” He shared that the 10-min drive home was the longest and the most painful journey of his life. On reaching home, Sana enquired about the report. Rizwan brushed her off. He went to his bedroom, called his and Sana’s parents, and then wept alone. After this, he shared the FNAC report with Sana. Hearing that she had cancer, she broke down. “We all cried, including my young son,” Rizwan shared with me. “As a caregiver, my next dilemma was where to seek treatment.” Rizwan reiterated that this is one of the most difficult decisions for a caregiver. Following the advice of relatives, they decided to travel to Mumbai for Sana’s further treatment. He was very sure that the FNAC report was a false positive because Sana had no symptoms that pointed toward lung cancer. The pain in her leg was under control too. Rizwan said, “The journey to Mumbai was very emotional. We were scared and I feared for Sana. I wasn’t sure if Sana would ever return home. With a very heavy heart, we left our young son with his grandparents and left for Mumbai. Mumbai was a new city for us. All this seemed like a bad dream.” They went to the Tata Memorial Cancer Center in Mumbai (Maharashtra in West India) and first met a surgical oncologist who examined Sana. He asked if Sana had ever experienced pain in any part of her body. Sana told him about the pain in her leg. He then examined the area around the collarbone and discovered a tumor there. A positron emission tomography–computed tomography (PET CT) scan confirmed that Sana had Stage IV non-small-cell lung cancer[3] with multiple metastases all over her body and the pain in her leg was due to a tumor in the acetabulum (part of the hip bone socket)! Both Sana and Rizwan were shocked. The next step was to meet a medical oncologist.
In Rizwan’s words, “We used to cry a lot. Sana had discovered that she had last-stage cancer. My biggest fear was that I would lose her in Mumbai. Further investigations continued. We both would go to the hospital and then return to our room. I was lost and couldn’t think straight. We reached Mumbai on December 22nd. We lost track of the days. We didn’t celebrate the new year. Our anniversary was on January 5th. We didn’t celebrate that either. Life had come to a standstill for us.”
After the molecular panel report came positive for a ROS1 mutation,[4] the couple heaved a sigh of relief and Sana was advised treatment with crizotinib. But this relief was short-lived when they were told the cost of the drug. Rizwan was very troubled to hear about the cost. Being the sole breadwinner, he had to arrange for the finances. He said, “Belonging to the middle-class is a bane. We have money but still don’t have it. I had invested my savings somewhere only a few months ago. The medicine was so costly, that I had to reach out to family members for help. The poor have different government schemes supporting them. For the rich, money is not a problem. For the likes of us, medical expenditure is a burden that is difficult to manage. I was lucky to get full cooperation from my company. Many don’t have this privilege.” After the money was arranged, Sana started tablet crizotinib. Every three months, they would return to Tata Memorial Hospital for her follow-ups. Although she did have side effects, things seemed under control. The cost of frequent travel to Mumbai was depleting their resources. So, they decided to follow up at a local oncology center. They were very disappointed by how they were treated there so they decided to continue traveling to Mumbai for the follow-ups. Rizwan says that caregivers like him are the OWNERS of the disease. They have to plan for everything-from where to get treatment, arrange for finances, take care of the child, job commitments, and plan for the future.[5,6]
At this time, Rizwan sensed some change in his personality. He was agitated, irritable, and would lose his temper often. He realized that he needed help. The doctor in his company advised him to see a psychiatrist which Rizwan did. Rizwan shared, “A caregiver should take care of not only their physical but also mental health. It’s easy to break down under such stressful conditions. Don’t be ashamed to seek help.” One very big challenge was how to manage the emotional impact on their son, who sometimes said, “Is there no one who can save my mother?” Every time the young child said something like this, Rizwan felt overwhelmed. “Our life has become only about cancer. What lies ahead scares me a lot. I am worried about our son. What will happen to him?” Rizwan shared.
It was during this time that Rizwan was introduced to Lung Connect India Foundation,[7] the first patient advocacy and support group for lung cancer in India. He said that the support group helped him a lot and he gradually started returning to his old life. He wanted to help out other caregivers so that they did not feel alone. The support group helped him to do so. Sana also participated in a clinical trial. Both she and Rizwan knew that this may not benefit her but it might possibly benefit other people diagnosed, in the future. While he puts on a brave front, on the inside he is still very vulnerable! All this has changed his outlook on life. Now he wants to fulfill every dream that Sana has.
He believes that Sana has the right to know everything. Knowing the truth helps them plan for the future. Sana has made a living will.[8-10] as she is aware of the poor prognosis.
He shared, “Sana wanted to see snowfall so we all went to Kashmir. We had a great time there. I promised Sana that every year we will travel to a place she likes.” Rizwan further added that Sana wanted to go for the Umrah (pilgrimage of Muslims to Mecca) and they are planning for it. Sana’s disease has taught him that life is unpredictable. They cannot change what has happened, but they have decided to live life to the fullest. As a caregiver, he has learned to control his emotions but sometimes at night when he looks at Sana sleeping, he cannot help but feel emotionally vulnerable. His biggest fear is what will happen to him and their son when she is no longer alive. Another challenge for caregivers is balancing all these issues and healthcare with work. Although Rizwan’s company has been very supportive, his career growth has been hampered.
The financial toxicity that came with the disease was huge. Rizwan said that despite the company providing insurance to the spouse, his out-of-pocket expenses have been too much.[11] “Our standard of living changed completely after Sana’s diagnosis. I had to borrow money to continue the treatment. We cut down our needs and those of our child too.” As a caregiver, Rizwan found and continues to find himself burdened all the time. He went on to say that there is no support system available in India for the caregiver.[12]
Sana was diagnosed in December 2021. She has been treated with crizotinib since. As of February 2024, she is living life to the fullest along with her husband and son. As this article is being published, Sana and Rizwan are on their way to Mecca for Umrah.
The names have not been changed as per the wishes of Mr. Mohammad Rizwan. He wants the world to experience his and Sana’s story as he has felt it.
ABOUT THE CAREGIVER
Mr. Mohammad Rizwan is a chemical engineer working as a process safety professional in the oil and gas industry. He is a loving husband who is in awe of his wife, Sana. He calls her a superwoman. He is also a very caring father. He volunteers at Lung Connect India Foundation-a patient advocacy and support group for lung cancer. His purpose in life is to help other caregivers like himself traverse the difficult journey of cancer. His hobbies are stand-up comedy, anchoring, and writing poetry.
