Shahleen Hussain, 22, from Burnley, fell into a 24-hour coma at school when she was 13. Doctors misdiagnosed her symptoms as being migraines for years before an MRI at 15 revealed a low-grade meningioma, with doctors predicting she had just six months to live. Shahleen defied the odds, managing her condition without surgery, while facing additional challenges, including stomach cancer and epilepsy. Recently married, she is dedicated to raising awareness of brain tumours and supporting others on similar journeys.
Shahleen tells her story…
I’ve been living with a brain tumour since I was 13 years old. It has been a long and difficult journey, one that has shaped my life in ways I never imagined.
It all began during lunchtime at school when I fell into a 24-hour coma. I don’t remember it and have to rely on classmates’ and teachers’ accounts of what happened. They said I fell asleep and, no matter what they did to try and wake me up, I just didn’t, so they called an ambulance.
At Blackburn Hospital, I underwent a series of blood tests, ECGs, and other checks. When I eventually woke up, I couldn’t tell where I was and was experiencing horrible symptoms like a splitting headache and vomiting blood. Despite this, I was sent home with a three-month supply of migraine tablets.
Life changed drastically after that. I was bullied at school, had to change all my clothes because of rapid weight gain from the migraine medication, and felt completely isolated. The migraines persisted, and I began experiencing new symptoms like passing out and paralysis on the right side of my body, classic signs of neurological problems caused by the tumour, which was still undiagnosed.
My mum, frustrated by the lack of answers, refused to leave the hospital without a proper investigation. A paediatrician finally intervened and admitted me for six months of tests. My dad stopped working to stay with me overnight, while my mum spent most of her time at the hospital. This left my younger siblings, aged eight and ten, to rely on family friends for support. It was a tough time for all of us, both emotionally and financially.
During my hospital stay, I underwent CT scans, MRIs, and blood tests, but my symptoms (paralysis, vomiting blood, severe headaches, and nosebleeds) continued. By the time I was 15, I began losing vision in one eye, where my pupil was dilated and black. Finally, an MRI with contrast dye revealed the cause, a low-grade meningioma the size of a golf ball on the left side of my brain. The tumour was pressing on my central nervous system, causing the neurological symptoms.
Doctors even advised my parents not to tell me, fearing the impact on my mental health. Surgery wasn’t an option due to the tumour’s location, as it carried risks of death or a vegetative state. My parents decided to let me live life fully, however short it might be, rather than risk that outcome.
After six months, I beat the odds and was transferred to Manchester Children’s Hospital, where I received steroid treatment. Later, I moved to The Christie cancer hospital in Manchester. The tumour neither grew nor shrank during this time when I was frequently in and out of hospital. The staff even knew me by name.
Living with a brain tumour is a constant challenge. People often assume that because my tumour is non-cancerous, it isn’t serious. But non-cancerous doesn’t mean harmless. During the COVID pandemic, I had to isolate completely, receiving medications at home.
I eventually started university, but during my final year, I was diagnosed with melanoma on my stomach. Doctors suggested it might be linked to toxins produced by the brain tumour. I underwent surgery to remove the melanoma, along with a skin graft. Soon after, I faced a diagnosis of stomach cancer which also required surgery. Balancing these health battles while completing my dissertation was one of the hardest things I’ve ever done, but I persevered and graduated.
At 21, my life took another turn. I began having seizures and was diagnosed with epilepsy, a condition linked to the tumour. This required more lifestyle changes and medication, forcing me to step away from my dream of becoming a qualified teacher.
Despite everything, I’ve found happiness. I recently married Junaid, who has been an incredible source of support. Together, we’re navigating this journey, and I’ve made it my mission to raise awareness through supporting Brain Tumour Research.
Just because my tumour isn’t cancerous doesn’t mean it doesn’t affect me. I live with severe headaches, nosebleeds, hair loss, and the daily unpredictability of epilepsy.
I want others to know they aren’t alone. I’ve faced isolation, fear, and the weight of being told I wouldn’t survive. Now, I want to use my experience to help others. Whether it’s through sharing my story or supporting someone on a similar journey, I want to make a difference.
Shahleen Hussain
December 2024
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Shahleen’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure