Nic’s Story

"I was 33 when my symptoms of a brain tumour began. It was a further 7 years before I received its diagnosis.

My main side effects at the time were ‘absence seizures’ and the different scans I had didn’t show anything on screen so it was believed I had epilepsy.

The different medications I was prescribed over the years didn’t control any of these episodes however and they continued to increase in their frequency and intensity and I was soon also losing complete consciousness and collapsing on a regular basis.

At the time I played the incidents down. The side effects are impossible to predict as they don’t come with an early warning symptom so they’re not manageable. It's scary to see a person lose consciousness so I kept my condition private to make life appear as ‘normal’ as possible otherwise.

My life soon involved pre-empting (and carefully planning for) further incidents like these in order to avoid them during the school run or commute. I would also remain aware throughout the day in case they might, and often did, then happen. I became much more selective in which activities and social events I could safely attend and could no longer drive so other elements of freedom disappeared too.

When my brain tumour was diagnosed I was actually somewhat relieved. It wasn’t a diagnosis I wanted, but it was definite and I could start to learn something about what I was up against and discover if and what I could do to work around further (and more dangerous) future accidents.

It’s been 4 years since my surgery to remove my tumour and I continue to be monitored for its return. I have a disability too and there are times when it becomes more challenging, ‘scanxiety’ is often one of these.

My positive perspective is that you discover invisible skill sets you didn’t know you always had until you experience life with something like this and I share my experiences and insights as a person, parent and employee to help others affected themselves.

My purpose is also to help improve upon earlier diagnoses and just to knowledge-share for general education and awareness."