Ministers announced the Government’s $604 million health budget to honour a National pre-election promise. Video / Mark Mitchell
Walking home after dropping off my daughter at school a few months ago, I suddenly lost my balance. With a sickening thud, I was splayed across the footpath.
Concerned passersby stopped to see whether I was okay. “All good!” I said cheerfully as I collected myself and my dignityand resumed my walk.
I’m pretty used to falling these days. To be honest, it feels miraculous that I’m walking at all.
In early 2020, I was frying spring rolls for a dinner party when everything went dark. I woke up in a hospital bed and was told I had suffered a grand mal seizure.
A doctor explained it was the result of a brain tumour. I was 37 and in otherwise perfect health. Two weeks later, I was tearfully hugging my husband and two young children before heading into surgery to remove the cancer.
Surgeryrarely cures malignant brain cancer. If a tumour is near a sensitive part of the brain, doctors can remove only part of it. Even if they get most of it (as they did in my case), the tumour almost always grows back, often aggressively.
I am learning to live with the knowledge that there’s a ticking time bomb in my head.
I was lucky. I had a low-grade tumour, an oligodendroglioma, which has a far better prognosis - patients can live about 10 years on average - than a glioblastoma, a more aggressive brain cancer that typically kills patients within 15 months, including my brother when he was 18.
But survival is only half the battle. Like up to 80% of the patients in treatment for brain tumours in the United States, I’ve had to adapt to a mind that feels very different from the one I knew.
Stolen words, lost memories
After the surgery, everything was hazy. Aphasia stole my words and wiped out my short-term memory. I didn’t know what year it was or who was president. I couldn’t remember the address of our Manhattan apartment.
When I opened my mouth to speak, I made incoherent sounds. Even when my speech haltingly returned over six long months of incremental progress, I still lost my train of thought midsentence.
In the shower, I would forget if I had used soap and reapplied it so many times my skin began peeling. I struggled to do simple maths problems or connect two dots to make a line. Loud noises felt like nails on a chalkboard.
To this day, odd spatial miscalculations mean I often knock over my coffee, bang the side of my face into walls and lose my balance.
I had earned degrees in engineering and economics and always took pride in my problem-solving skills.
Before my diagnosis, I was the director of economic research at a family investment office. My sudden inability to manage even basic tasks was devastating for my self-esteem. If my mind no longer worked the way it used to, was I still me?
Doctors know how difficult it is.
Ingo Mellinghoff, my neuro-oncologist at Memorial Sloan Kettering Cancer Centre in New York, said telling patients they have a brain tumour is more difficult than delivering news of other types of cancer.
“It’s not just because brain tumours are incurable,” he says. “It’s because of the cognitive impairment they will almost certainly experience.”
Giving a diagnosis of brain cancer can be more difficult than delivering news of other cancers. Photo / 123RF
Mercifully, malignant brain cancer is relatively rare - afflicting fewer than 26,000 Americans a year, according to the National Institutes of Health.
Yet it is fairly dire: Only a third of these patients are likely to be alive in five years, and the disease kills more American children aged under-15 than any other type of cancer. Perhaps because brain cancer attracts less research funding than more common cancers, there have been few treatment breakthroughs in the past 20 years.
This may change with the National Brain Tumour Society’s new Quality of Life Research agenda. Clinicians can now apply for research funding to explore common symptoms afflicting brain cancer patients, including fatigue, seizures, and poor sleep, as well as challenges with balance, co-ordination, word-finding and memory.
“Quality-of-life issues are widespread among brain cancer patients, but they are tough to quantify and often overlooked in the quest for cures. We need research just like this to come up with better, less toxic treatments,” says John de Groot, a neuro-oncologist at the University of California in San Francisco.
For patients like me, these initiatives can’t come soon enough.
But I’ve learned to cope. After my surgery, my oncologist recommended Vorasidenib, a recently approved drug that targets genetic mutations specific to my tumour. I’ve been on it for more than two years, and my cancer, so far, is stable.
This, together with my anti-seizure medications, has left me with near-crippling fatigue, but it’s far better than the toxic world of chemotherapy and radiation I may enter if my quarterly MRIs reveal a new tumour.
Although I still have lapses when I walk and talk, I feel more like myself, thanks to the care of speech and physical therapists. I’ve also discovered quite a few coping mechanisms on my own.
When I first began misplacing words, I would freeze and gape like a fish. Seeing people gaze at me with pity was mortifying. I’m now better at finding alternative words, changing the subject or simply saying, “Oops! I lost my train of thought!”
Daily checklists, deeper appreciation
My days are now dictated by checklists, which I’ve drawn up to make sure I don’t forget to turn off the stove or grab my keys before heading out. Because my brain needs more rest, I take regular naps. I take comfort in the brain’s remarkable ability to knit together, repair and grow new neurons. I am humbled, but I am healing, too.
I am no longer able to work - a loss I still mourn. But my diagnosis has deepened my appreciation for what gives life meaning.
My husband and I sold our apartment, which had been crammed between tall office buildings, to move near Central Park.
My daily walks amid majestic oaks and myriad songbirds are both meditative and healing. My time with my children feels profound, often achingly so. We are as honest as possible about my diagnosis, but death is still too abstract a concept for them. It remains fairly abstract for us, too.
Like many Pakistani immigrants, I used to bury my emotions under hard work and tangible accomplishments. But at the urging of a psychiatrist, I’ve become more comfortable talking about my sadness over the untimely loss of my brother’s life and my uncertainty about my own.
Because brain cancer has few survivors and a fairly small community of advocates, patients can feel isolated. I now feel a responsibility to be more open about my challenges and fears, not only because I’ve found this helps ease my suffering but also because it may help someone else with theirs.
Once an obsessive planner and frantic multi-tasker, I have learned to slow down and appreciate the small things. Making brownies with my 10-year-old daughter. Reading to my 6-year-old son. Building sandcastles on Long Island beaches. Stargazing in the dark skies of upstate New York.
It turns out there’s always room for innocence and awe, for love and beauty.
Grand dreams and ambitions now feel uncomfortably hubristic, but perhaps they always were.
