Stories: In Your Words

Your stories. Written by you.

This collection of personal stories have been written by brain tumour patients and survivors as well as their loved ones. They are personal perspectives on about how patients and families find strength and hope and stories of perseverance.

We are honoured to be able to share these stories and say 'Thank You' to everyone who has shared.  You can share your story by entering it on the Share Your Story form now!

Joelle & Rob

Joelle & Rob's Story

In Sept 2004, my husband Rob was 30 yrs old and I was 8 months pregnant with our second child, days away from leaving work to begin a special time on maternity leave, and time at home with my 2.5-year-old son. We saw such a bright future ahead of us and could never have anticipated what the next 15 years would bring.

Amber

Amber's Story

I am a 43-year-old wife to John of 12 years and a very proud mom to Amelia 10, Matteo 6, and Joey 4. On March 13, 2019, my life changed in ways that I couldn’t even fathom at the time. Out of the blue, I experienced hearing loss in my right ear and pins and needles up my right side; something I had never experienced before.

Janica: Dancing in the Rain

Janica: Dancing in the Rain

I am the recipient of your award (Youth Education Award) from 2015. This my update since completing University: Since being diagnosed with a brain tumour, life has not been easy for me; University was no exception. I had my fair share of struggles during my time in school. I failed some and struggled in most classes, but overall, I had a great experience...

Christine: Youth Education Award Recipient

Christine: Youth Education Award Recipient

Right now, at this point in my life, I could say that overcoming childhood brain cancer has been one of the major goods that have happened in my life. Having gone through what was so devastating at that moment in time, but then having victory over cancer, has led me to a life full of grace, opportunity, and love. Being a cancer survivor has shaped my identity for the better, and I am proud to say that I suffered cancer and that I had the power and strength to defeat it.

Amanda

Amanda's Story: She believed she could...

My name is Amanda. I am 17 years old and a 13-year brain tumour and stroke survivor. I've been living with a physical disability as a result of my stroke and tumour. Now, because of all the challenges I have faced in my life, I have decided to become a motivational speaker. This is my story.

Piper

Piper's Story: a dream more precious than Olympic gold

Hi, I am Piper Gilles. You may know me as a world-famous ice dancer. I competed in the PyeongChang 2018 Olympic Winter Games. I am a 7 time world team member and a 7 time Canadian medalist. But the title that means the most to me is far more personal. It’s that of daughter to my amazing mother Bonnie Gilles, who I lost to glioblastoma on May 27, 2018.

Doug

Doug's Adventure

I am Doug, I have brain cancer; I am told it is terminal, but the “good” kind of terminal. I can assure you that receiving that news was not as good as I think the people telling me thought it would be. But I choose never to define myself with negatives or problems so I will begin again; Hi, my name is Doug, a current defending two-time world rowing champion. That sounds better. Here is just a small summary of my adventure last year.

Yaron

Yaron's Story: 15 years of Hope

This February 23, it will have been 15 years since I collapsed in a grand mal seizure and was subsequently diagnosed with Glioblastoma (GBM). It’s been quite the adventure since the last time I shared my story. I acquired a certain degree of double vision on my left eye — a long term effect of the radiation I had in 2004.

Aaron

Aaron's Story: I Refuse to Sink

In the summer of 2017, while at work, I had my first episode of what I would now call vertigo or double vision. It was something I've never experienced before. Everything in front of me seemed to sink into the ground, my hands moving in super slow motion. It lasted about for a good 30 seconds before everything went back to normal. I brushed it off and continued on with the day.

Avery

Avery's Adventures and Accomplishments Part II

Five years. It has been five years since Avery was first diagnosed with her unfriendly brain tumour, the Juvenile Pilocytic Astrocytoma (JPA). What has been happening since this diagnosis? Well, first, she was able to meet her idol! It was July 9, 2014, that Lady Gaga saw her story, Avery became a guest of her show and did a meet and greet with her after. Let me tell you, what an experience!

Scott, My story so far

Scott, My story so far

Brain tumours have different types and classifications. Within each of those is a situation unique to the individual. No two brain tumours are exactly the same and no two tumours cause the same issues or impact a person in the same way. I hope this information can clarify some of the more typical questions people have and provide some specificity to my situation.

Anthony

Anthony's Story / Our Story

I would like to take the opportunity to share "our" story. It’s actually my best friend Anthony's story, but I use the term "our" because when someone is diagnosed with a brain tumour, they don't go through it alone. Everyone who loves and cares for the patient goes through it too. Not to take anything away from the patient themselves, and not comparing the loved one's experience to what a patient goes through but from an emotional standpoint, it can take a toll on loved ones as well.

Kate

Kate's Mum's Story

May 2006 is a month I will never forget. That was the moment that everything became before the cancer, and after the cancer. It was a mark in time that would forever change my family. Born in England, my mum grew up the eldest of seven siblings.

Roy and the Gamma Knife – A Happy Tale

Roy and the Gamma Knife – A Happy Tale

I had headaches, almost daily, for 10 years or more. It was a rare day if I did not have a headache. I used to joke that I should own stock in headache remedy companies. I also had a lot of night sweats, non-restful sleep, and trouble regulating my body temperature. All these symptoms, both my GP and I put off to stress. My marriage was not great, I didn’t enjoy my job … I thought it was stress.

Janet

Janet's Story: Turning 49

Recently, my husband and I turned 49 years old. Yes, we are exactly the same age. Adam and I discovered this on our first date while we sat at a tiny table in a popular restaurant in Toronto’s gay village. We were just another couple getting to know each other, talking for hours. We chatted about our careers, funny details about our families, favourite places to travel and where we’d still like to go.

Courtney’s Story of Stability

Courtney’s Story of Stability

Stability. It’s a strange concept when you have what it known to be a progressive, life long illness. You hear the words, “Your tumour growth is stable” and for a moment you think someone is playing the world’s worst prank on you.

Moxie

Moxie's Story: The brain tumour that tried to kill me slowly

It's been 3 months since my transsphenoidal pituitary surgery. I'm still trying to piece my story together. I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta, and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months.

Sara Shor’s Story of Hope

Sara Shor’s Story of Hope

I moved to Canada from Mexico City in November 2011. Soon after my arrival, I started having very strong headaches. The doctors thought I was experiencing migraines and treated me accordingly, but the headaches worsened to the point that they woke me up at night and I couldn’t function properly during the day. I started to feel very weak and dizzy, with episodes sometimes persisting for days. I took many painkillers and went to the Emergency Room a few times...

Catarina

Catarina's Story: Crush Cushing’s

I was always healthy growing up. Between the ages of 14-21 I lost a lot of weight, although my medical tests always came back as normal. In grades 10 and 12, I missed a lot of school because I was always feeling ill; panic attacks, my digestive system would stop functioning correctly, I was stressed, and I always had headaches. Anxiety and depression also runs in my family, so I thought it was just that – genetic.

Don

Don's Story of Hope

I was experiencing extreme fatigue. I was eating properly, exercising when I could, and getting enough sleep. But I was exhausted all the time. I made an appointment with my GP. He had a hunch, and decided to have me get some blood tests done. I made a follow-up appointment, got the blood tests done, and pretty much put things out of my mind.

Lin-Pei

Lin-Pei's Story: Do you get it?

I began my brain cancer journey in February 2011. At the time I was eight months pregnant and thought I understood what people were referring to when they said that they had “baby brain”. I couldn’t remember names and often felt at a loss for words. One day I was so dizzy and nauseous that I asked my co-workers for help getting to the hospital. With no signs of a baby on the way, I was discharged. A few days later, I was back at the hospital.

Traci

Traci's story: Taking it one day at a time.

About three years ago, I noticed that the hearing in my right ear was fading. I saw my family doctor who diagnosed me with inner ear fluid. "It will disappear on its own" he said. After surgery on my shoulder in August 2015, I became aware that I was off balance and had a ringing in my ear that meant I couldn't hear from that side. Attributing this to pain medication and inner ear fluid, I thought nothing more about it until January 2016 when vertigo set in.

Joshua

Joshua's Story: Where our footsteps lead...

My son's challenge has expanded my heart to have compassion for all families facing similar circumstances. In September 2015, my then 4 year old son Joshua seemed to start daydreaming. We noticed this happening shortly after he started Kindergarten. Whenever we mentioned this to people, they told us not to worry, it's nothing. Or we were told that their kids do the same thing and it's perfectly normal.

Tyler’s Story: Every day I fight

Tyler’s Story: Every day I fight

At 23 I had everything. After six years of working as a conductor, I had saved enough money to buy my first house and a new car. It was also at age 23 where I started to get severe headaches that took me to the hospital. After my second visit they finally did some tests. I had a CT scan, they hooked me up to an IV and heart monitor, and was told to sit tight and wait. After about 30 minutes three doctors came over and closed all of the curtains around me. “We found something in your head”.

Brigitte

Brigitte's Story of finding support

I was first diagnosed in 2010. I had symptoms of extreme pressure and pain, my sight had deteriorated, I was very nauseous and dizzy. Once the MRI was reviewed, my GP made some calls and told me that I was to go directly to the ER department at University Hospital in London, that they were awaiting my arrival for surgery. And so, my journey began.

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Featured Story

Alicia's Story: You gotta laugh every day

It’s hard to capture an infectious giggle in words, but that’s exactly what you get when you speak to Alicia. Alicia is now 20 years old. She was diagnosed with a brain tumour at just six months old, so having a brain tumour is her normal. Despite her diagnosis, three brain surgeries, loss of vision, and multiple medications, she laughs every day and is determined to inspire people.

Learn more

Spotlight

Piper's Story: a dream more precious than Olympic gold

Hi, I am Piper Gilles. You may know me as a world-famous ice dancer. I competed in the PyeongChang 2018 Olympic Winter Games. I am a 7...

Learn more

Youth Education Award recipient update

This my update since completing University: Since being diagnosed with a brain tumour, life has not been easy for me; University was...

Learn more

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