What started off as dizzy spells gradually cultivated into a much more serious daily concern that my younger sister Amy Gledhill endured throughout her teenage years. Now aged 18, these “fade outs” that came and went at random times were eventually diagnosed as epilepsy in the form of absent seizures which she could remember experiencing from as young as 12.
“Originally they were just about five seconds of half being out of it and not really knowing what’s happening.”
However, as the years went by the moments of dizziness continued to grow in length and severity and the symptoms became concerning to doctors who had not seen anything like it before. At its worst she was experiencing seizures at least four times a day. It was our Mum who first suggested the possibility of epilepsy after witnessing one of the moments for herself and after countless tests proved it to be nothing else, she was diagnosed with the condition.
At the time Amy was 17 and undergoing her final year of HSC. On top of the stresses of school she was balancing visits with her General Practitioner on a regular basis as well as meeting up with her specialist every three months. The prospects of driving and drinking alcohol were also no longer a possibility for the near future. The goal was to stop the seizures with tablets that had previously worked on similar cases of epilepsy. This proved to be a difficult task as her prescribed medication often varied in effectiveness, which meant that the dosage was constantly changing in an attempt to stifle the episodes. The medication alone came with its own challenges of drowsiness and lack of concentration, which had detrimental effects on her studies.
An MRI (Magnetic resonance imaging scan) revealed the cause of Amy’s concern, a tumour. The growth situated in the left-hand-side of her brain was putting pressure on certain areas and resulting in the absent seizures.
“I was a bit shocked. I couldn’t really believe it,” She said.
“Once I found out it was benign I was a little bit happier that it was non-cancerous, or that’s what I was told at the start.”
The tumour had grown to the stage where the medication could no longer control the seizures and the tough decision was made to undergo brain surgery and have the tumour removed. The delicate procedure brought along with it a number of risks such as the possibility of deafness, memory loss, and loss of vision — particularly right peripheral vision. Luckily none of these side effects came into fruition with the surgery going as well as it could have. Following the operation Amy has had no seizure activity, however this was not the only concern for my sister.
From an early age she has always been a keen netball player, and in more recent years a coach, and for her this experience cemented her love of the sport and its importance in her life. Her main concern over the surgery was how it would impact her ability to play and as a defender the thought of losing peripheral vision was the most distressing. Finding herself on the bench after experiencing an absent seizure during a game in Sydney made her determined not to let the epilepsy continue to affect her on the court.
Barely a month out of the major surgery Amy was back training even after not being able to move for two weeks due to back problems that developed from being restricted to lying down for a week. Three months on and she played her first game of A-grade netball since surgery with the support of her coach and teammates every step of the way.
“That was the one goal that I had after surgery, was how quick I could get back on the court and do training.”
Her successes post-surgery did not end there as her team, Echuca United, went on to win the grand-final six months following the procedure; Amy able to experience it all from where she is at her best on the court. An achievement that Amy describes as one of her greatest netball moments. The Under 13 side she coached that season also won their own grand-final the same day which only made her recovery to netball all the more worth it.
The victory and every small goal that was reached along the way were important moments that were able to motivate Amy in her recovery.
Unfortunately, these are not the only hurdles that Amy will have to overcome throughout her journey. The diagnosis is still there and will continue to be a part of our lives. The results from surgery showed that it was a cancerous tumour and that although they removed every visible portion there is still the possibility that the tumour could return.
“I cried, so did my sister, and my parents”, Amy said.
“I went in thinking it’s gonna get removed, it’s not cancerous, I’ll be safe afterwards. And then when I was told it was cancerous my heart sort of sunk”.
Amy’s feelings are shared by a number of young adults who also have to face the confronting reality of cancer. In Australia an average of five young adults, aged 15–29, are diagnosed with cancer every day, according to the Australian Institute of Health and Welfare study conducted in 2011. This makes up 1.7% of all cancer cases diagnosed in Australia. For these young adults, the prospect of cancer can be incredibly daunting as the idea of being diagnosed at such a young age is so unexpected. It can also have an impact on the families of patients, like mine, who are just as confused by the diagnosis.
In the case of my sister she will continue to have MRI scans every six months to monitor the tumour and with no growth currently since the operation it is likely it will be another ten years before she experiences any activity again.
Amy four days post-surgery.
The sacrifices of having half of her head shaved for surgery and attaining swelling in her face and neck following the operation were worth it with the prospects of driving now a reality. Her story is one of resilience and determination, with the goal of playing netball being a constant motivator in her recovery and a much needed distraction from the diagnosis.
“It’s made me learn that you can get through anything. So just keep going through it all.”
Advice she will no doubt pass on to the next generation of netball players in her coaching.
Typical of my sister she won’t let this point in her life hold her back as she continues with her full-time work and keeps developing her netball. Despite being older in our relationship, Amy’s strength throughout everything that has been thrown her way gives me a lot to look up to and admire in my courageous little sister.