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.
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?
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!
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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 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.
On June 26, 2012 we welcomed our beautiful baby boy Kohen Hans Paschek into the world. He was perfect, born naturally at forty weeks plus one day, weighing in at seven pounds twelve ounces; little did we know that two years eight months later he would be ﬁghting for his life and that the world as we knew it would be forever changed.
I had suffered from seizure disorder since I was 15. I am 59 years old now. In 1989 my neurologist did an MRI scan and found a tumour in the right temporal lobe of my brain. It was a sizable tumour and he decided that surgery was in order. In 1990 the surgery took place and during the surgery he also removed the focus of my epilepsy in the centre of my brain. I was released within 10 days of the surgery. Thankfully the tumour was non-malignant.
When I was 7 years old, I remember having headaches every day. I became sensitive to loud noises like the school bus and bright lights and I was tired a lot. I remember everyone telling me that I might need glasses, but every optometrist we saw said I had perfect vision. One night, my mom looked over at me and my one eye had turned inwards. Shortly after, I was diagnosed with a Craniopharyngioma...
On the November 9, 2011, I had my first grand-mal seizure. I was on vacation with my wife and son visiting her mother in Labrador. I was rushed to the hospital where I had a CT scan. The doctors found what they described as a "growth" on my brain.
Sevanah Kathleen Simmons was an active, normal six-year-old girl who loved singing, dancing her highland steps, creating artistic masterpieces, and writing and drawing her beloved monkey stories. She had 35+ monkey stuffies she fondly referred to as ‘The monkey crew’ and built extravagant monkey towns throughout the entire living room. Sevanah loved to read and learn which made home-schooling much easier for Gramma.
In late summer of 2012, I started to notice changes to my 53 year old husband, an active and hardworking guy. Gradual changes of apathy to the things he loved to do. He absolutely loved umpiring locally and nationally and was very involved in a regional hockey board. He enjoyed his job as a heavy equipment operator. He started to talk about quitting the things he had been passionate about. I attributed that to a mid-life crisis...
My rapid change in life all began in 2010 when I found myself in the emergency room worrying that I had shown symptoms of a seizure. After a CT scan I was sent home with the results of no seizure activity and a business card for a Neurologist that would call me for an appointment. An MRI was to follow, and there was no sense of urgency.
14 May 2010, a spinning room upon waking – my first vertigo attack and the onset of my first migraine, prompted a CT scan. I remember lying in the ER room listening to the doctors outside discussing the scans of a rare brain tumour; little did I know they were talking about me.
My loving partner, Victoria Lee, died of an oliodendroglioma brain tumour in late 2013. She had been diagnosed in 2001 and fought the disease for twelve years. Our name for it was “ugly oli,” and from the moment it came into our lives, it parked itself in our space and from there forward, controlled our every move. It took any sense of normalcy from our world and changed our lives forever. This is my tribute to Victoria.
I'm not really sure where to start, but when I was little, the doctors told my Mother who adopted me that I was visually impaired and I would eventually lose my sight. My Mother, understandably, was in shock, but nevertheless, never gave up on me. She always had my back and loved me unconditionally. One of the doctors told her that I would never walk or talk. When I was 4 years old, my mother and I walked into the doctor’s office together. She told me that his mouth was gaping open with shock.