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Fair For Rare: Andy's Story

My rare disease journey started in April 2013 when I was living in Sydney. The first symptoms I started experiencing were severe headaches that lead to me suffering nausea each day. I also noticed reduced function of my right hand; my handwriting had became untidy and often I seemed to walk with a strange 'gait' causing me to lean slightly to my left. 

One morning not long after my symptoms had started to appear, I awoke to what felt like a trapped nerve in my right elbow. At that stage my partner put sufficient pressure on me to see my GP, who referred me for a CT scan. The results showed a shadow on the CT scan, so I was then recommended for an MRI to get a more detailed picture. Hopefully to bring some understand as to what was happening to me. 

After coming straight home after the MRI, within 10 minutes of coming through the door, my GP called to ask me to attend an appointment first thing in the morning. All he could tell me was that they had found a mass on my brain, and he would have further information sent to him overnight.

My partner and I went in the following morning to see him, only to be told the news that there was a 2.9cm mass on my Cerebellum which was putting pressure on my spinal column hence all the symptoms I had been experiencing. We were sent to straight to major hospital in Sydney, and I was admitted that day. As I was a public patient, I had to wait a week to be operated on. On 5th June 2013, the neurosurgeon removed what turned out to be a Medullablastoma brain tumour; extremely rare in adults and almost always fatal in children.

As a result of my tumour I was fired from my job. For legal reasons I can't go into the details but Fair Work Australia found that I was unfairly dismissed.

After the operation I'd been told there was a 70% chance of the tumour recurring within the first two years. So to ensure that the tumour was completely gone, I completed 9 weeks of radiotherapy. My Oncologist didn't want to subject me to chemo at that stage as I reacted poorly to the radiotherapy losing 26kg, as a result of being left unable to eat for six weeks.

We moved to Melbourne in December that year due to me finding a new job. My new employer has been absolutely fantastic and supportive; I’m employed as a Technical Trainer for a large car manufacturer.

Since 2013 I have gone from monthly MRI's to every three months, to now having MRI's once every six months, and I have found a brilliant oncologist who continues to support me throughout this journey. 

I don't consider myself a fighter as my tumour was removed so quickly before I needed to really fight, but I'm a survivor of this horrible disease. My partner Debbie is the real fighter, as she kept our three children and me all together and floating, throughout this journey and I am forever grateful to her. There is a diverse range of rare diseases in Australian, I only having one of them. Each rare disease like mine requires the care of a range of different health specialists. Access to coordinated care is vital to better meet the needs of people living with a rare disease in Australia.