This is my story\u2026.<\/p>
I was 18 and felt horrible.. Not how you are meant to feel when you turn 18; I felt as though an elastic band was squeezing my brain. I had throbbing in my left ear (like my heart was in my head) and every time I tried to walk my left leg felt weak. I felt tired all of the time and had trouble concentrating at school. The doctors kept saying it was Glandular Fever and a middle ear infection..... Then I started vomiting and the pain got worse.<\/p>
Mum rushed me to the Emergency Department and I was sent for an MRI, brain scan. The diagnosis was quick; A large Epidermoid Brain Tumour (my surgeon told me it was as big as a mandarin) . The tumour was in a dangerous spot. They told me it was in-operable, too big and they wouldn't touch it. After many different opinions from neurosurgeons around Australia, we finally found my surgeon who agreed I had no other option but to have surgery. Due to the location and size this was very risky. As I had only just turned 18 it was my decision - to be honest this is still all a blur.<\/p>
I remember thinking I was in year 12, I had dreams and no time for brain surgery. Yet here I was signing a consent form for brain surgery. I remember feeling petrified that the operation would not work. The words \u201cinvasive brain surgery\u201d, \u201ccraniotomy\u201d\u2026.. what does it all mean? Do they really open up my skull? I was told I could loose my speech, my ability to swallow and left side paralysis.<\/p>
The operation lasted 10 hours. When I woke up, the pain was unbearable. I was attached to so many drains and monitors. Thankfully, I hadn\u2019t lost my speech and spoke to mum and dad straight away. My amazing surgeon had removed the whole tumour when this seemed unlikely prior to the surgery. They moved me from ICU after a few days to the neurosurgery ward and the nurse told me that the great hurdle was to make it to the 2 week mark. If I could make it that long with minimal complications, my chances of a good recovery were high.<\/p>"},"title":{"id":1543477,"value":null},"subTitle":{"id":1543478,"value":null},"paragraph1":{"id":1543479,"value":null},"paragraph2":{"id":1543480,"value":null},"paragraph3":{"id":1543481,"value":null},"ratio":{"id":1543482,"value":"short"}}},{"id":169773,"type":"textBlock","published":1,"size":{"x":6,"y":0},"order":2,"items":[],"properties":{"html":{"id":1543483,"value":"
Then began my long, complicated road of neuro-rehabilitation. At times the fatigue has felt like the worst exhaustion I have ever experienced, multiplied by a million. I have suffered from a lack of concentration, memory, left sided weakness and have had peripheral vision loss is my left eye. It\u2019s so weird how the brain works. Some days when I\u2019m not feeling great, I feel like I have all the same symptoms as when I was diagnosed with the tumour. Like my brain remembers them - then back comes that familiar sense of fear.<\/p>
It has now been nearly a year and a half. It has taken longer than I expected - sometimes I am a lot slower than I used to be. What has made the difference in my recovery is the support and understanding of my family and close friends and having experienced health professionals in neuro-rehabilitation to help guide me through the complexities of rehab with the brain. For young people in Australia this support can be hard to find.<\/p>
That is why, for Brain Tumour awareness month, I wanted to tell my story and raise awareness so that young people leaving hospital after a brain surgery have the care they need. My aim is to bring awareness of the need for multi-disciplinary rehabilitation and recovery care after brain surgery.<\/p>