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!

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.

Breanne’s Story: Finding Hope in Accepting My New Normal

Breanne’s Story: Finding Hope in Accepting My New Normal

My life before diagnosis was pretty hectic. I was very active, volunteered at a local animal shelter, was involved in organizing an ultimate disc league, went back to school to complete my BSc degree, worked full time as a Radiation Therapist, and was a “mother” to two rescue dogs.

Liz

Liz's Story of Giving Back

I think most of us, especially as we get older, start to think about our life, the contributions that we may or may not have made over the years, and think perhaps the time has arrived to start giving back? I was very fortunate having met a wonderful guy, and we had three great little boys. So…when I found out that I had a brain tumour, I thought…Uh really? Not exactly a good time here: Kinda busy with kids, career, being a wife etc. Well, ok then, let’s get this done.

Holly

Holly's Story: Sometimes depression isn't depression

I was depressed. Like, ran away from my life in small town Ontario across the country solo to big city life in Victoria, BC. I would cry myself all the way to work in the morning, struggle to get through the day with mood swings and anger, then cry myself all the way home to my bed in the afternoon. I tried everything in my power to find my happiness again. One day I finally admitted I couldn’t get out from under this on my own. My mom convinced me to go to a walk-in clinic and seek help.

Carol

Carol's Story

I am writing ten weeks after I underwent surgery to remove a meningioma tumour from the left lateral side of my brain. The operation was in November 2016. The tumour symptom that originally sent me to my MD was an accelerating loss of vocabulary. He ordered a CT scan which diagnosed the tumour and before long I was also having small seizures roughly twice per week.

Meagan

Meagan's Story: Helping others in a new way

When you receive a call and hear the words “the doctor wants to see you ASAP” – you know that can’t be good. “So on your MRI they did find a mass – a little bigger than a golf ball and we are referring you to a really great team”. What do you mean mass? Like a tumour? But how can this be? I already have so much on my plate why do you need to throw this my way? I just had a major car crash, was that not enough already?

Roksana

Roksana's story: Dancing into a new life journey

For anyone thinking, 'what are the consequences of a brain tumour operation?' I would say: "Expect a big surprise when you first look in the mirror" as you will suddenly find out that all your hair has been shaved. But to be optimistic and inspiring you have to think of how to turn a shaven head, and later funny looking hair, into something which looks like a choice. I started with a blonde wig!

Peter

Peter's Story: We'll see where the narrow road takes me

It's now time to publicly share what until now, only health professionals, family, closest friends and many prayer-warriors already know. On June 23 I had a surprise grand mal seizure, followed by brain surgery 5 days later where 2/3 of a brain tumour was removed. On July 13 the biopsy confirmed cancer - a grade 3 Astrocytoma.

Jamie

Jamie's Story: My Dad, My Hero, My Best Friend...

February 2008: My Dad was having some problems but he would not go to the hospital. My Mom had to call his best friend Terry over. When Terry came in, Dad knew why he was there. He went to the hospital! Dad saw a neurologist in March, who ordered a CT scan, then another CT scan with contrast. Following that he was admitted to the hospital for more testing like MRI, bloodwork, etc.

Katherine

Katherine's Story: Filled with gratitude

I was diagnosed with Anaplastic-Ependymoma, stage 3 brain cancer, at the age of twelve. By my second surgery, my neurosurgeon had mentioned that I would be hospitalized for three to eight weeks after my surgery, and I would start physiotherapy (starting with sitting up) later that week; that was a no-no for me! I told my neurosurgeon that I would be home five days later, and my neurosurgeon had smiled and then said that I should wait and see how I feel after my surgery.

John

John's Story

January 1st started out like any other day, but with a little more excitement as the kids and I were secretly getting stuff together for my husband's 35th birthday the next day. However he woke up with a headache and did not feel good so recommended we postpone our plans. He went back to bed but woke up hours later in even more pain and had started seeing and hearing things that were not there.

138 Days

138 Days

138 DAYS That's how long a husband, father and grampa lasted - 138 days from diagnosis to death! A healthy, active, hard working man, never missed a day from work. A yearly cold was all he ever was sick with in the 30 years we had been together. He was only 61 years of age with that brain tumor ruined so many lives. His name was Ken the love of my life, the father of our sons Spencer and Josh and proud grampa of Liam.

Danielle

Danielle's Story: Living With Cushing’s Disease

Just this past weekend my family and I walked in the Toronto Brain Tumour Walk at Nathan Philips Square. I raised a total of $3,558.00 for the Brain Tumour Foundation of Canada and hope to continue to advocate both for myself and anyone affected by brain tumours. Even on your darkest days, I want you to remember; there is light at the end of the tunnel. It does take work, but I promise that it will get better!

Andrew

Andrew's Story: Hope

Friday June 3 is a date I wish I could forget. On this exact day and date in 1977 I was diagnosed with the first of my 4 brain tumours, and on the 13th anniversary, also a Friday, I was diagnosed with another tumour. This one, the first of 4, was a Medulloblastoma which was treated with surgery, chemotherapy and radiation.

Lawrence

Lawrence's Story: Brain Maker

Eighteen years ago, the day after he and his wife Tiffanee had announced their first pregnancy, Lawrence Sparling suffered a grand mal seizure that marked the start of a very unexpected health journey. It was triggered as he was playing The Tragically Hip’s “Ahead By A Century” on guitar – an odd coincidence considering the recent brain cancer news from the band’s lead singer Gord Downie. “It’s very strange to have that connection come full circle,” admits Lawrence.

Seng

Seng's Story: Facts and Arguments: Smiling at Strangers

Dave and I would often comment to each other how lucky we were to not have experienced any major life changing events in our lives. My parents were affected by a war where bombs were falling around them, escaping and leaving everything behind with a baby in their arms. Later I was to be born in a refugee camp. Dave’s mom had a father who drowned when she was young, leaving his Grandma a widow with a young child and twin toddlers. We felt so thankful in life and appreciative of the life we lived.

Christianne

Christianne's Story: Live life to the fullest

When I was diagnosed with a Pilocytic Astrocytoma, I was 10 years old. I knew I had neurofibromatosis but I never thought this would happen to me. All I cared about at that age was who my next soccer game was against, and swimming in my babysitter's pool. My parents took me to the doctor all the time because they knew something was wrong. I was 49 pounds, 49 inches tall, and I wasn't growing or gaining weight. The doctor told me I was anorexic, even though I had no idea what that meant.

Martha

Martha's Story: Brian's Brain

Thieves broke into our apartment years ago when we were newly married, stole Brian’s wallet, and then tried to buy gas for their getaway by forging the Visa bill under the name: Brain Brooks. Forty-four years later my handsome husband with his beautiful mind was diagnosed with brain cancer and we spent the next year grieving the unthinkable — his death, and celebrating the amazing — his life. What can I say about that journey other than it was painful and, in a sadly wonderful way, transforming.

Olivia’s Brain Tumour Story

Olivia’s Brain Tumour Story

Olivia Hughes is a twenty-year-old student at Macewan University, entering the third year of her Bachelors of English degree. She wants to travel the world, and last summer began by traveling through Alberta and British Colombia on her own by working along the way, couchsurfing, and hitchhiking. She’s involved as this years Edmonton Brain Tumour Walk’s social media co-ordinator, and work often inspired through her medical journey.

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Featured Story

Pablo's Story: The real blessing in all of this

In 2010, Pablo found himself in the ER eight times within six weeks. Intense headaches, drastic weight loss, jaundice, dizziness, and lapses in time were repeatedly dismissed by doctors, but Pablo knew that something was very wrong. Choosing to advocate for his health when others might have given up, Pablo sought out the opinion of his family practitioner and his persistence may have, in fact, saved his life. An MRI revealed a grade IV atypical meningioma on Pablo’s brain.

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Spotlight

Catarina's Story: Crush Cushing’s

Brain Tumour Walk events bring people together. People like Catarina and Danielle, both survivors of pituitary tumours that caused...

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Where our footsteps lead...

We remain inspired by the bravery and perseverance of the brain tumour community, including kids like 6-year-old Joshua, who completed...

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Upcoming Events

  • 21/Aug/2017: Virtual Support Group for Caregivers: Virtual Support Group for Caregivers... Learn more >
  • 21/Aug/2017: Guelph Support Group: Meets at Hospice Wellington, Community Program Room, 795 Scottsdale Avenue,... Learn more >
  • 22/Aug/2017: Groupe de soutien virtuel: Un groupe de soutien virtuel pour personnes touchées par une tumeur... Learn more >
  • 28/Aug/2017: Greater Sudbury Support Group: Meets at The Parkside Centre, 140 Durham Street, Sudbury, Ontario... Learn more >
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