ESSAY: MY LIFE WITH A BRAIN TUMOUR

Published June 9, 2024
The writer with the head and face mask during his last fraction of radiation in Islamabad | Photos by Seyad Ali
The writer with the head and face mask during his last fraction of radiation in Islamabad | Photos by Seyad Ali

What do you do when, at age 30, the doctor says you have a brain tumour? How do you come to terms with the news or tell your loved ones about the diagnosis?

I cried. I panicked. I hid the news from my young family and elderly parents.

Then I set about learning everything I could about what was happening inside my skull, and what I could do to get treatment. I became an expert on what Pakistan’s health system can, and cannot, do for people with life-changing and, potentially, life-ending illnesses.

This is my story, which is not going to end anytime soon…

It was December 2023 and I was preparing to go to the United Kingdom, where I had been accepted to a year-long degree programme at a university in London. I had done my graduation in economics and finance from a university in Islamabad and was running a successful business as a distributor, for a pharmaceutical company, in my home province of Khyber Pakhtunkhwa.

While I was travelling from my hometown in Malakand, for a visa-related appointment, to Islamabad, I experienced vertigo. It had happened twice before in the same month and I had dismissed it as a headache.

Six months ago, Gohar Ali was diagnosed with a brain tumour. The news upended his life, but with the support of family and loved ones, and a strong desire to survive, he has managed to stay ahead of his potentially life-threatening condition. In this very personal essay, the 30-year-old narrates what he has gone through, with the hope that it might help others in similar situations…

This time, though, as a precaution, I decided to get it checked. I asked my cousin in Peshawar to arrange a consultation with a neurologist. Once I got to Peshawar, the discussion was all about my upcoming journey and the headache was an afterthought.

KEPT IN THE DARK

The next day, the cousin who had got the appointment, accompanied me to the doctor. At the clinic, I was asked routine questions, including about my upcoming trip. The doctor recommended a routine CT [computed tomography] scan of the brain, to ensure that everything was normal.

After reviewing the scan, the doctor expressed some concern and suggested an MRI [magnetic resonance imaging] with contrast. He also shared his number, instructing us to send the MRI report and images to him as soon as we had them. During the MRI, the technician asked if I had experienced any accidents or trauma, to which I responded in the negative.

When I returned from the MRI room, another cousin had joined the one who had accompanied me. They were visibly upset, but tight-lipped.

After the MRI, I asked for my report and films, but the laboratory technician — a friend of my cousin — told me the facility was closing and asked me to return the next day. My cousins had already instructed him not to disclose any findings to me and to delay handing over the report and films.

Once home, I could sense my cousins having hurried discussions in private. I would find out later that this was because they had been informed about the tumour. However, I was still in the dark.

The writer with the neurosurgeon, Dr Syed Ather Enam, at AKU before his surgery
The writer with the neurosurgeon, Dr Syed Ather Enam, at AKU before his surgery

FACING DESPAIR

The next day, my cousins took me to a neurosurgeon with the MRI results. Upon viewing my results, the neurosurgeon entered a deep discussion with a colleague. I overheard them mention glioma, a term I was hearing for the first time. When I asked what it was, the doctor explained that it was a low-grade tumour.

I was stunned. I mustered up the courage to ask if I had the tumour in my brain. His response was: “Yes, beta [son], you do.”

My heart sank.

Somehow, I told him about my upcoming journey to London, to which he replied: “Don’t go. Stay with your family.”

The realisation hit me: I might have very little time left. It brought tears to my eyes.

Once I managed to compose myself, I inquired about the treatment. He recommended a ‘wait-and-watch’ approach. I was told the tumour was located near critical areas and the lesions had surrounded the middle cerebral artery, one of three major arteries that supply blood to the brain. This placement posed a risk of paralysis.

The journey back from the hospital was extremely difficult. I remember telling my cousins: “I feel like I am already dead.”

But the desire to live trumps all.

I called my younger brother, who was in Islamabad, to inform him about the situation. He couldn’t believe it. When he last saw me, I was shopping for my UK trip. Now, I wanted him to get me an appointment with a neurosurgeon, so I could get a second opinion.

I also instructed him not to share this news with anyone else in the family, including my parents.

The surgeon in Islamabad suggested that the “neuronavigation system for a maximal safe resection” was the best possible option for someone in my situation. I was unfamiliar with this equipment and the medical terms, but the doctor clarified that it is a sophisticated technology used during brain surgery to precisely navigate and map the brain’s structures in real-time. This system minimises the risk of neurological deficits — such as motor, sensory, language and speech, visual field and cognitive abilities —particularly because the tumour was located near the area controlling the left side of my body.

I agreed to the procedure, since the removal of the tumour was the only viable option. My younger brother and cousin were dead set against the idea and didn’t want me risk the procedure. “I don’t know if the tumour will kill me, but the stress and tension [of it] surely will,” I remember telling them.

We decided to confer with our elders, but I convinced everyone not to tell my wife and my mother. There were emotional scenes and a lot of tears.

Even as the news of my condition spread to my extended family, we were able to keep it hidden from my mother and wife and my two children. For me, they were an oasis in a desert of despair, and one I wanted to cling to, desperately.

The writer celebrating Eid with his daughter in his hometown after the surgery
The writer celebrating Eid with his daughter in his hometown after the surgery

FINDING CORNERS TO CRY

While I held my emotions in check when I was with my family, it was a struggle to hold back tears every time I saw my children. The nights were particularly difficult; every time I would wake up in the middle of the night and see my children sleeping, I would start crying inconsolably.

I began researching about my illness extensively, to understand the treatment options. I searched for survival stories, because the spectre of death loomed constantly over me. I consulted my friends, including those in the medical field.

I received mixed opinions about my treatment options: some advised against surgery, while others suggested I proceed with my plans to move to London, as everything was set up for me there, potentially offering better treatment opportunities.

I did not know what to do, but I knew that I wanted to spend as much time as I could with my family and my two beautiful children.

FEARING FAREWELLS

A little over a month after the diagnosis, I travelled to Karachi to consult a highly-recommended neurosurgeon at the Aga Khan University Hospital.

The Karachi trip and the cancellation of my UK study plans had alarmed my mother, but I was able to reassure her that I was going there for a routine health check. But my mother, and even my wife, knew that something was amiss.

In Karachi, the neurosurgeon advised me to get the tumour removed through a surgical procedure. He suggested awake craniotomy – which meant I had to be conscious during the procedure — and neuronavigation to minimise risks, including paralysis.

While I was ready for the procedure, my financial situation wasn’t that simple. I had to get a refund on my university tuition fee, for which I needed a medical report. The team at AKU provided the report and also instructed me to discuss the potential surgery with my family and to inform them of our decision, so that they could schedule it.

The days before finalising the surgery were not any easier. My cousins took me to various tourist destinations, but I couldn’t enjoy any of them.

The surgery was scheduled for February 19, but I was still struggling to get the finances together, with the refund taking time. I dipped into my savings and borrowed money, but was still short. A cousin, who works in Saudi Arabia, found out about my situation and transferred the remaining funds. With the radiation and chemotherapy cycles, the treatment cost has ballooned to more than two and a half million rupees.

With the surgery still two weeks away, we decided to return home before the procedure.

Once home, I had to lie to my mother yet again. I told her that the doctor was out of the country and we were scheduled to return later in the month for a routine procedure.

On Valentine’s Day, I bade farewell to my beautiful wife and two children, who were still in the dark about my condition, before starting my journey back to Karachi. I kissed every single person at home, unable to hold back tears, and asked them to keep me in their prayers. I was deeply upset, because I feared I might not return home or, if I did, it might be in a wheelchair, or even worse.

UNDER THE KNIFE

On February 18, I was admitted to the hospital, where I underwent various tests and met a variety of health experts, including the anaesthesiologists.

Here, I was touched by the kindness of strangers. A female attendant of one of the patients in my ward struck up a conversation with my cousin, who was my attendant. After learning that my mother was unaware of my condition, she came over to reassure me: “Don’t worry, beta [son], you will be okay. I am here for you.” She also asked my cousin to bring me over once I was discharged, so they could celebrate my recovery.

But these moments of hope were few and far between. I was agitated during routine check-ups and spent the night awake, fantasising about a miraculous recovery and fearing an untimely death.

On the day of the surgery, the doctor suggested that I call my mother and wife to inform them about my surgery.

This would be the most difficult conversation of my life.

With tears streaming down my eyes, I called my mother and told her about the imminent procedure. Her wails pierced my heart and I did not have the words to console her.

I couldn’t muster up the energy or the courage to call my wife after that. Instead, I took two photos from my phone and sent them to her, along with a message about my surgery.

As I was being escorted to the operating room, I met my surgeon, who asked me if I could recite the verses from the Holy Quran during the surgery. I quickly agreed, as I am a strong believer in the power of prayers.

The neurosurgeon explained why he wanted me to do that. He told me that since I would be awake during the surgery, the recitation would help the surgical team monitor and preserve critical brain functions, such as speech and sensation. This practice is known as intraoperative brain mapping.

The surgery lasted around four hours, and I was placed under anaesthesia towards the end, to allow time for some rest and healing. At one point in the surgery, I felt as if I had lost my speech, but the psychologist assured me that I was fine. I don’t remember much else, except the sawing of the surgical instrument as it cut into my skull, and the sound of my scalp being stapled, presumably at the end of the surgery.

Thankfully, the procedure went as planned and I was discharged from the hospital within 48 hours. I stayed at a relative’s house in Karachi for the next two weeks of post-op recovery.

After that, I returned to the hospital to have my staples removed and to receive my pathology report. The report indicated that I had an ‘Astrocytoma Grade II IDH [isocitrate dehydrogenase] Mutant.’

This means that it is a primary tumour, which is less common and originates in the brain. Grade II astrocytomas are considered low-grade tumours, meaning they grow relatively slowly, compared to higher-grade tumours. However, they can still be serious and may progress to higher grades over time. There are four grades of tumour, with grades III and IV being malignant and fast-growing.

I learnt from experts that the IDH mutation was significant because it is associated with a better prognosis, compared to astrocytomas without this mutation.

ROAD TO RECOVERY

Following the surgery and after reviewing my reports, the tumour board at the Aga Khan Hospital recommended radiation and chemotherapy.

So far, I have completed 30 ‘fractions’ of radiation and 42 cycles of chemotherapy. Currently, I am on a one-month recovery break as part of the treatment plan, with the next round of chemotherapy to begin later this month.

According to my doctors, I am responding well to the treatment, with a clearer picture to emerge following my next MRI, scheduled later this month.

Meanwhile, I have been able to return to my home — on my own two feet — and reunite with my family. I continue to live and eat healthy, and exercise daily.

I have even started driving, and I often drive to the hospital myself for the chemotherapy.

For now, the doctors are optimistic, as am I, about my condition. I am not sure for how long the treatment will continue and when I will be rid of the tumour inside my head, if at all.

What I know for sure is that I will live every moment to the fullest, for as long as I don’t succumb to it.

The writer runs a medicine distribution business in Peshawar

Published in Dawn, EOS, June 9th, 2024

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