Amisha Thobhani, a three-time brain tumour survivor and dedicated advocate, has transformed her personal battles into a powerful mission to support others navigating the same difficult journey. Her work with the Hillingdon Brain Tumour and Injury Group, where she volunteers, fundraises, and uplifts patients, recently earned her a Gold Award in the Promoting Health and Wellbeing category at the Hillingdon Community Awards.
Through her advocacy, creative workshops, and tireless awareness campaigns, Thobani has become a vital voice for a condition that remains widely misunderstood, frequently misdiagnosed, and severely underfunded.
Reflecting on her journey of surviving three brain tumours to Asian Voice, Amisha Thobhani said, “Brain tumours are the biggest cancer killer of children and adults under 40. After my two surgeries in 2005 and 2010, I realised how little support existed for patients once they left the hospital. The emotional and mental trauma is often invisible, mood swings, depression, memory loss, difficulty concentrating, exhaustion, headaches, partial vision loss, and changes in personality. It’s hard to share this with family because you don’t want to burden them.
“The turning point for me came when I met a young mother whose two-year-old son, Max Earley, was misdiagnosed for a month and tragically passed away. She had to watch her only child endure unnecessary painful procedures that could have been avoided. Earlier diagnosis would have saved his life. Stories like Max’s, along with the lack of awareness and support, pushed me to begin advocating, raising awareness, and helping others facing similar battles,” she added.
“Earlier diagnosis could save lives”
Speaking about her long association with the Hillingdon Brain Tumour and Injury Group, Amisha said, “In 2009 I discovered a local support group led by Becky Haggar, whose husband’s brain tumour had been misdiagnosed as sciatica. It became a safe space where we could share our stories, feel understood, and be vulnerable without judgment. After years of fundraising, the group officially became a charity.
“I now serve as a trustee and volunteer weekly at our charity shop, The Centre of Hope in Hillingdon. My work includes supporting patients, liaising with sponsors, leading arts and crafts sessions, and helping organise fundraising events like school fairs and quiz nights. I also raise awareness by speaking publicly, sharing symptom cards with GP surgeries and schools, and auctioning my artwork. I have co-authored an article with my neurosurgeon that was circulated to GPs across the South East, and my story is also featured on The London Clinic’s website,” she added.
About the arts and crafts sessions she runs for patients, Amisha said, “It’s incredible to watch patients move from uncertainty to rediscovering their creativity. Many come in with communication or mobility challenges, yet once the session begins, they become so absorbed that they momentarily forget their limitations. We’ve seen quiet, timid individuals open up; laughing, engaging, and allowing their inner child to play. Art offers a way to express what words often can’t. It helps people connect with themselves and others, reduces stress, lifts mood, and boosts cognitive function. It also encourages mindfulness; slowing down, being present, and finding calm. These sessions give patients a space to escape their worries and create something meaningful to hold on to.”
On raising money for brain tumour charities, Amisha said, “I’m proud of every fundraising effort because each one helps raise crucial awareness. My hope is that all funds raised in the future will go directly into research so we can ultimately find a cure. Anyone diagnosed with a brain tumour deserves hope. As our charity says: Where there is light there is hope; where there is hope there is life.”
“Only 1% of cancer research funding goes to brain tumours”
Speaking about the increasing impact of brain tumours on younger adults, she added, “Brain tumours kill more children and adults under 40 than any other cancer, yet there is still no known cause or cure. Around 35 people are diagnosed every day, and 13,000 each year. They kill more children than leukaemia, more women under 35 than breast cancer, and more men under 70 than prostate cancer, yet only 1% of national cancer research funding has gone to brain tumours since 2002.
“Misdiagnosis remains a major problem, so it’s vital to be your own advocate. Learn the symptoms, seek a second opinion if needed, get an MRI of the brain, and get your eyes checked, my optician ultimately diagnosed my tumour after years of symptoms. And if you are diagnosed, please join a support group or charity so you don’t have to face the journey alone.”
On her biggest lesson and source of strength, Amisha said, “My greatest lesson has been learning to be kind to myself. Brain tumours are an invisible illness, you may look fine, but no one sees the internal struggle. I’ve had to stop feeling guilty about giving up full-time work, saying no to people, or taking daytime naps when fatigue overwhelms me. I’m learning to love myself again.
“My strongest support has been my husband Anish and our twins, who have lived this journey with me for 20 years. My parents and sisters have been my backbone, along with extended family and friends. Becky and the charity have been life-changing, she’s an inspiration and an angel, devoting herself to others even after losing her husband. And my hero will always be my dad, Dr Amrat Gokani. He came with me to almost every appointment and lifted my spirits until his last days. I hope I continue to make him proud.”
