Kuala Lumpur, Malaysia
|Photo by cottonbro from Pexels|
Eight months ago, my brother was diagnosed with stage 2 urothelial carcinoma. For months he had been telling me that his urine had “a tinge of red” to it. I dismissed it as dehydration, since he was young but did not take good care of himself. Some weeks later I received a phone call from him, saying, “I pulled up the urine tests from the last few medical checks I’ve had at work and there has been blood in my urine since last year.” My heart gnawed at me: could I have been wrong this whole time? I told him to go to the nearest hospital and have himself thoroughly checked just to be on the safe side. Nothing could have prepared us for the series of events that would unfold over the next few months.
As I was seeing patients one morning, I received a text from my brother with a picture of his scan. My heart lurched when I saw it: a mass attached to the lateral wall of the bladder. Before I could react, he called. “The doctor I saw had terrible bedside manners! He just told me point blank that it was cancer with zero empathy. I want a second opinion.” I encouraged him to get that second opinion, although deep down I already knew the truth. He saw another urologist who was more tactful and diplomatic, and he agreed to the first of many invasive procedures.
My brother was terrified of hospitals and needles, and now he would have to endure a transurethral biopsy. He was torn, confused, and devastated. He was becoming an airline captain, a dream he had harbored ever since he boarded his first flight at the age of five. He was a father to a beautiful two-year-old girl, married to a wonderful woman. The idea of losing everything dear to him was terrifying. I was terrified, too.
The day before the first biopsy I spent a long time comforting him over the phone. For weeks I had tried to convince him that it was nothing more than a benign growth, when in retrospect I think I was only trying to convince myself. “Whatever the outcome may be, cancer or not, we’ll get through this together.” He paused and replied, “I think that’s the first time you’ve admitted that it could be cancer.” After hanging up I cried, and although I was at work I did not care who was looking. I was a senior medical intern, hundreds of miles away from home, treating other people’s loved ones every day, but I could not be there for my own brother when he needed me the most. As I sat in my despair, a colleague came to check on me and I poured my heart out to her. “Go home, we can cover for you. Come back for the night shift tomorrow. Your brother needs you more than your patients do right now.” That is how I ended up on a bus less than two hours later, crossing three state borders to be with my brother for just a few hours. Six hours later, I was hugging him in a lonely hospital lobby. “You made it,” he whispered. “I can’t do this alone.”
The next day the whole family was together, my niece crawled all over her “Papi” as my sister-in-law and I bantered with my parents. If we had not been in a hospital room, it could have been mistaken for Christmas Eve dinner. I stayed long enough to see him into the operating theatre, then took the next flight back as work obligations awaited. The next weeks were torture. My days were spent consoling others as my own mental well-being deteriorated. As the only medical professional in the family, I was everybody’s listening ear, which meant that I did not have the luxury of falling apart. Then came the dreaded news: the biopsy was positive for cancer. I was leaving work when I got the call: “It’s not benign. It’s cancer. But you knew that, didn’t you? I could tell from the way you’d try to convince me every day that you were doing the convincing for two people.” He was not wrong. I had done an excellent job of trying to convince myself, but this call confirmed what I already knew and had not been willing to admit.
Some days after digesting the devastating news, our family realized that this was going to be our new normal. My brother’s treatment options included bladder removal surgery with an exterior pouch for urination or bladder removal with reconstruction from existing internal tissue. Both were major surgeries with risks. The former would mean he could not work as a pilot anymore, and the latter could impact his fertility. Neither option was appealing to a thirty-five-year-old man. The third option was bladder preservation using chemo-radiotherapy, which is what he chose. This began a six-month journey towards recovery. He was in a lot of pain from a stent that was inserted into his ureter and was heavily dependent on pain medication. He had to run to the toilet every half hour, to the point that he had to wear an adult diaper.
My dad and I went Christmas shopping one evening. We were looking for a gift for my brother when my father picked out a rather large cross-body bag for him. When I asked him why he chose it, his answer broke my heart. “At least he has a bag big enough to keep his diapers in,” he choked as tears welled up in his eyes. My father was a man of few words, but this unfathomable process had broken his tough exterior. We were determined to have the best Christmas we could, and to give my niece some semblance of normalcy amidst this chaos. My brother had tolerated chemotherapy poorly. He was constantly tired, nauseated, and began losing hair. He shaved his hair and beard off to avoid upsetting my mother, who would otherwise see patchy hair loss. Every time I had called he would keep the conversation short, not wanting me to hear him retching over the toilet bowl.
Six months later, I was proud and surprised at the man my brother had become. In my experience as a doctor, patients often crumbled at the thought of cancer. But somehow my brother had become a delightful exception. One of the many lessons I learned is that little joys can become big joys in the face of adversity. My gaunt but chipper brother would waltz into the chemotherapy bay, singing hellos while handing out coffee to the staff, radiating glee in a dreadful space. He spent his afternoons walking in the sun with his daughter snuggled on his chest, no matter how much pain he was in. As much as he was suffering, it was always masked with a radiant smile. This was not a public mask to thwart sympathy: he emanated true joy. “Why?” I asked. “If I can be happy right now,” he replied, “I want everyone else to know they can too.” As a doctor and a person, I learned that you cannot go back and change the beginning of a story. But you can start from where you are and create a happy ending.
THANUJA SUBRAMANIAM, MBBS, graduated from Monash University in Melbourne, Australia, and is a medical intern. She is interested in patient perspectives towards disease and treatment and how that can be utilized to enhance the healthcare experience.