Gaining Perspective and Getting My Life Back!
My name is Jacob and I’m from Melbourne, Australia. I’m sharing my story because the brain cancer fight is global.
In February 2014 I was diagnosed with a Grade II astrocytoma glioma brain tumor. I had been experiencing problems with my concentration, speech, vocabulary and cognitive function for nine months before deciding to go to my GP to get it checked out.
Anxiety was the initial diagnosis, however my GP thought it would be advisable to ‘play it safe’ and get an MRI on my head just to make sure everything was OK from a physical perspective. When I walked into the MRI room, the technicians said it would only take 10-15 minutes and wouldn’t involve a contrast injection. 45 minutes later when they were inserting a cannula into my arm I knew something wasn’t quite right.
Later that day, my GP called asking me to see him the next morning to discuss results. After a sleepless night, I went to my appointment with my GP. He said the MRI had indicated a low-grade glioma in the right temporal lobe. The following that, he let out a huge sigh of relief that we had had the MRI, then mentioned he’d made an appointment with a neurosurgeon for me two days later.
Prior to my neurosurgeon appointment, I started documenting my thoughts and feelings on camera. While I was pretty scared about what lay ahead, I thought it would be beneficial to put everything down on camera in the hope it might serve a purpose down the track.
My parents nervously travelled to Melbourne for my first appointment. I was born with a rare congenital heart condition known as coarctation of the aorta, which required three open-heart surgeries prior to the age of 18, so my parents were anxious to see what lay ahead for me in my latest challenge. The neurosurgeon examined me closely, explained the results of the scans and advised me that brain surgery was the only option to remove the 3cm x 2.7cm x 2.5cm mass from my temporal lobe. The date was set for mid-March (two weeks after the appointment) and I was issued with strict instructions for more MRI scans (including a Functional MRI to determine where my language was assigned in my brain), EEG and a series of blood tests. During my blood tests it was discovered that I had a blood clotting disorder known as Factor VII Deficiency ,which affects only 1 in 500,000 people. I met with a hematologist who looked through my blood profile and determined I receive plasma infusions during and after my surgery.
I was admitted to St Vincent’s Private Hospital on Sunday 16th March with a planned surgery the following day. On the Monday morning I went down to radiology to have a ‘stealth MRI’, which provides surgeons with geographical mapping of my head to assist with surgery. Once that was completed I returned to the ward and awaited my afternoon surgery time slot. As 4pm rolled around, I bid farewell to my family and was wheeled down to the pre-op room where I awaited my general anesthetic.
“I remember feeling unbelievably nervous as I knew this could be my last moment of ‘normal life’ and I prayed everything would go OK.”
The surgeon then came in with a very worrying look stating that the stealth MRI had not been done correctly and that they needed to get the scans done again and push my surgery to the next day. I recall feeling as though I was on an emotional rollercoaster as I was wheeled back to the ward.
On Tuesday 18th March I awoke at 8am, went down for my new stealth MRI – the fifth MRI in two weeks – then went down to the operating theatre for the real thing. Five hours later I groggily opened my eyes and my surgeon asked me a few basic questions to ensure I had my basic cognitive functions, then returned me to the ward for five days of resting, rehabilitation and adjustment.
I returned home on Sunday 23rd March for six weeks of nursing my wound, accommodating visitors, pushing my walking limitations and adjusting to alarmingly heightened senses (noise was the worst!). Having been in reasonably good shape prior to my surgery, I was keen to look at alternative ways to return to exercise in a controlled environment. I purchased a road bike with a magnetic resistance trainer and slowly set about building my fitness as the weeks meandered by. As my fitness improved, so did my ability to concentrate and I set about putting my video together on my brain cancer experience.
“I knew that while my journey was still in its infancy, it was a story that could help provide support and motivation to those facing similar challenges.”
Follow-up scans reveal residual tumour and I find myself back in the MRI tube every 12 weeks, however I’m focused on enjoying my life and maintaining a positive mindset is KING.
I created a video diary documenting key moments of my brain cancer journey. If you would like to watch it, please visit youtu.be/kuirzsz60Dk.