Tom

In my gap year of 2017, I had just got my license and was saving for a car when I was diagnosed with a benign brain tumour located in my central canal.

The last few years of high school, I had noticed a rapid progression of fatigued and my vision started to deteriorate. I remember a specific thought I had in year 11 when I was feeling particularly tired for the first time. I joked to myself that maybe I have a brain tumour but dismissed and forgot about it. This thought resurfaced itself when I started getting dizzy spells and not being able to see street signs. In the back of my head when started getting other symptoms, I knew I had brain tumour but kept it to myself as I did not want to accept this as a realistic scenario and scare my parents. The night before I saw the optometrist I cried in the shower because I knew.

When attending my appointment, the next morning, I knew something was wrong. The optometrist spent an abnormal amount of time examining my eyes in an uncomfortable silence. He told me to go to the emergency room as soon as possible for an MRI scan. I spent two days in agonising wait to hear my results in hospital of the scan. Luckily it was benign but had already grown to 6cm in diameter and was very difficult to operate on due to the location. I was told I would be having a craniotomy and will most likely not be able to walk or talk once it was completed but told it could be re-learnt.

I had the surgery two days later, it lasted seven hours. From the moment I woke up, I was smothered by thoughts of ‘how the hell am I going to live a normal life again?’. I tried to speak, but quickly realised I was trapped, looking at the world from inside with no way of communicating. I was conscious and had full comprehension and insight of the world around me but could not get words out. Along with this, I was in, and still suffer with, a constant state of complete fatigue but could not sleep.

I was in Sir Charles Gardiner for one month, having Speech Therapy and Occupational Therapy sessions. I was then sent to Fiona Stanley for rehabilitation.

It was gruelling and frustrating but as another month went by, I could string a few words together and regained my mobility through relentless physiotherapy.

Two and a half months since my optometrist appointment, I was discharged from hospital and was taken care of under Fiona Stanley Outpatients. This was the hardest time, being at home with myself and my thoughts. Only a few months into my gap year, I still wanted to live a full life. At the time I was getting weekly speech and OT sessions from Fiona Stanley outpatients and then followed up by the State Head Injury Unit. After gaining most of my speech abilities back, I volunteered at the Saint Vincent De Paul’s shop, which helped me to build up my tolerance. I then enrolled in the University of Notre Dame as a Registered Nurse.

I am currently one semester from completing a nursing degree with the goal of further studies in social work and work part time as a support worker. My fatigue has improved but is still a major issue that I must constantly monitor and gauge. It was far from easy and have had many times where I have wanted to give up but each time I have remembered what I have gone through and how far I have come.

I would like urge anyone, patients and families that are going through the hard work now. I understand the urge to give up and be angry for what is happening. It is ok to blame and get angry but remember that the people closest to you are there to help, not hurt you. As hard as it may seem, you are loved, and you are not a burden to anyone. Keep pushing, but remember it is ok to collapse. Pick yourself back up and keep moving forward, any progress is good progress! Your mental health is extremely important, make sure you have healthy outlets and people to talk to. Try to find people with similar lived experience as they will understand.

Life will seem like standing in front of a mountain surrounded by thick fog. Hardly being able to complete simple tasks like finding bus times or planning my day. But when the fog clears, you will see a path to the top, and how far you have traveled already. You may have to re-assess your goals, but it can be done! Be patient and kind to yourself.

Well done and keep pushing forward!