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From devotion to despair: a teacher’s fight against glioblastoma

Dr. Damane Zehra
Conditions
August 15, 2024
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He was only 31 years old. He had a beard and was a very tall and incredibly handsome man. He was a teacher who used to teach the Holy Quran to young children in a faraway village in Punjab. He used to offer his prayers regularly. He did not go to school or college but was a productive member of society. He worked at a tailor shop and used to stitch garments as a part-time job.

One day, he had a generalized tonic-clonic fit while praying at a mosque. He fainted, and his neighbors brought him home. His parents took him to several local physicians who kept prescribing him antiepileptics, but his condition worsened over weeks. He started losing balance, having headaches, and experiencing projectile vomiting. His father thought of consulting some expert doctors in a big city.

When he saw a neurophysician, he was advised to get an MRI brain scan as soon as possible. His scan showed an aggressive brain tumor. His surgery was performed urgently, and the tumor turned out to be glioblastoma multiforme. He was referred to radiation oncology for further treatment.

On the first encounter, when I saw him, he was wearing a kufi. “Kufis are the traditional and religious skull caps for Muslim men, mostly worn on the head during prayer.” Being a mullah, he was extremely modest and reserved towards women. When I first met him, he respectfully introduced himself but did not even look at me. I had to remove his cap to examine the scar and look for skull edema.

He spoke and understood Punjabi only. Being an unknowledgeable person who could not understand Urdu, it was difficult for him to understand his diagnosis, the nature of the disease, and his treatment course. His parents did not tell him at all that he had a brain tumor. They informed him that he had some swelling in his brain that was causing his fits and that he would be completely fine after completing treatment.

He started radiation treatment with oral chemotherapy. He became familiar with me and started calling me his elder sister. He used to talk to me in Punjabi, and we met almost every day. Whenever he came for radiation treatment, he would simply say hi to me.

He was not completely fine. He had been facing urinary incontinence since the time of his diagnosis. At each of his weekly radiation follow-ups, his major concern was the difficulty he had been facing regarding his prayers. He had to change his clothes multiple times a day and perform ablution again and again, just with the thought of purifying himself. I felt inspired that despite having vertigo, balance, vision, and other neurological issues, his only worry was not to miss his prayers. He had memory problems and used to talk about the same things over and over again. I just kept reassuring him that he would be fine in no time.

When a patient lies down on a treatment couch on the linear accelerator, some patients can hear the beep-like sound coming from the gantry head. As days pass, patients become accustomed to the sound, finding reassurance in its indication that their treatment is underway.

He also noticed that sound and named that beep “tik tik.” He did not know what to call the radiation treatment, so he just called the treatment “tik tik.” Our linear accelerator broke down for two days, and he came to see me on both days to inquire, “Baji, aj tik tik nae laani?” “Sister, won’t you do my tik tik (radiation treatment) today?”

Sometimes the radiation staff felt irritable due to his repetitive talking. On those days when he had a delay in his treatment, he would come to me and complain about the radiation staff. After my reassurance, he became satisfied. On such days, he used to say, “I am angry with the radiation staff, but I can never be angry with you. You are my sister. How can I be angry with you ever?”

His parents always asked me to give him sedatives because he used to talk a lot and repeat the same phrases over and over again. Over time, I started seeing an elder brother in him. I found him adorable. I liked talking to him. I liked hearing the same phrases again and again. I didn’t find them irritating. I wish he could be cured in any possible way. I wanted to see him healthy and happy.

Isn’t it ironic that doctors, who understand diseases well, sometimes think irrationally when it comes to their own family or loved ones? They seem to forget the harsh realities. The same happened with me. I forgot everything. I just wanted to listen to him; I wished he would keep talking. I wanted to hear the sound of his laughter and his silly jokes daily.

Unfortunately, during the last week of his treatment, he suddenly went into status epilepticus. Imaging showed a huge tumor relapse, extending into his brainstem. His parents decided not to intervene further. He developed severe brain edema. He was admitted and started on supportive medications. He was unconscious when I last saw him, just behind the glass door. I couldn’t summon the courage to go inside the ward.

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The next day, his condition deteriorated. My colleagues informed me that he was close to passing away. I didn’t have the courage or the heart to witness him dying. I never went to see him. I knew I would not be able to listen to the sound of his laughter, his silly jokes, and those repetitive phrases again. I wish I could do anything, no matter the cost. My brother died that day, and all I could do was cry.

Damane Zehra is a radiation oncology resident in Pakistan.

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