My name is Andrew. In 1998 I was diagnosed with having an anaplastic astrocytoma in my left frontal lobe (a type of brain tumour) at 23 years old. At the time, I was working as a commercial pilot for the Kalgoorlie-Boulder Aero Club in Western Australia. I subsequently had surgery at Royal Melbourne Hospital with follow up radiotherapy and chemotherapy.

I can recall discovering that I would lose my hair (permanently) from a friend who happened to be a radiotherapist. I'm not a vain person but not receiving any information from the treatment centre at a time when you have multiple concerns does not portray a good image. The only counselling offered by the hospital was a brief session after, which I did not find particularly helpful anyway. During this time my family and I had to rely on relatives and friends for support.

My illness was discovered due to a seizure I had while sleeping. Because of this, my career aspirations in the aviation industry as a pilot were instantly dissolved. This was especially difficult for me to accept as it had been a lifelong dream. I can recall not talking much about what had happened to me at the time my illness took place as I did not know who to talk to. Approximately one year later I experienced an anxiety attack (panic attack) which was terrifying. I also remember breaking down one day and my parents not knowing what to do. My mother, in particular, found this overwhelming and had to leave the house for a few hours.

After a few years I decided to pursue a new career in the information technology sector. I enrolled in a a Bachelor of Business in Information Systems at Victoria University. I studied and worked in this area for approximately 6 years before recently gaining employment as a flight dispatch officer with a well-known aviation company.

While I am now considered to be in remission, the support available during my time as a patient was scarce. The medical staff were incredibly professional with their duties, however I do not believe they should also have to provide emotional and follow-up care. I believe that having an individual or group to talk to would be much more beneficial. I am aware that support is available for children and teenagers, however young adults seem to have been forgotten.

This age group has young families, mortgages and are in the prime of their life.

Please keep in mind that I do not want people to feel sorry for me. I hope that in telling my story, individuals will become more aware of the struggles that this illness causes and be prepared to offer support in whatever way they can.

I’ll never forget the Sunday morning I woke up feeling uneasy, that something wasn’t right. Next thing the telephone rang - it was my brother’s fiancee calling to say that he’d had a seizure, that something was very wrong and that the air-ambulance were flying him from Kalgoorlie to Perth Hospital to run some tests. My heart sank. Frantically I called my parents, who were living in Singapore at the time, to inform them of what I’d just been told. Within hours they were on the next flight out to Perth.

Andrew was diagnosed with a rare brain tumour for a young adult and was flown to Melbourne for an urgent operation. It was a long surgery – 7 hours clocked before we received a call from the surgeon to say that it was over, he said he felt the operation had been successful and that Andrew was in ICU recovering. The neurosurgeon that operated on him was brilliant and did a fantastic job during the surgery. He did everything he could to ensure that the operation was a success and that Andrew would not be left with any physical ailments afterwards. Andrew’s operation was done while he was awake to ensure that they didn’t affect any areas of his brain that controlled his motor movements. So they put him under while they opened up his skull, then woke him up while they very carefully removed the tumour. They had likened the procedure to trying to separate black sand from white sand. The surgeon had told Andrew that he wouldn’t remember any of the procedure, that although he would be “awake” during the operation, he wouldn’t actually be fully aware or able to recall any of it. But Andrew did. He remembered being asked to move various limbs and he remembered the feeling of the operation itself. He doesn’t talk about it much, but I’ve always wondered what kind of impact such a recollection would leave on someone. That’s not your average kind of operation. However it certainly meant that Andrew came out of the operation in the same condition as he went into it. Once in intensive care the staff at the hospital were great with Andrew and it wasn’t long before he was out of intensive care and sent home with a part-shaven head and a good few stitches.

That was the beginning. Andrew was told he had a malignant brain cancer and that he had between 6-12 months to live. They suggested he undergo intense chemotherapy and radiotherapy to see if that would help. So he did. The chemo made him very unwell and as Andrew knew that they weren’t sure whether the chemo would make any difference, after a few treatments Andrew decided to finish the chemo as he could not stop vomiting no matter how much anti-nausea medication he took. He then had radiotherapy which was also very traumatic. However, what they failed to tell him was that he would lose his hair – permanently. He found out by accident through a friend of his that was working in the radiology department. So when he woke up with increasing amounts of hair on his pillow, he was scared and worried and wondered whether he would ever have a full head of hair again. No one told him that the hair loss would be permanent. No one seemed to tell him anything unless he specifically asked or found out through other means.

It was such a difficult time for him. Prior to his seizure he had moved to Kalgoorlie to work as a pilot, but with the news of brain cancer also came the news that he would not be able to fly again as he would not regain his medical certification. This was incredibly devastating for him as it was his life long dream to fly.

So within a couple of very quick weeks, Andrew had to deal with the shock of finding out he had brain cancer, that the doctors had given him a maximum of 12 months to live, that he had lost a section of his hair permanently and that he would never fly again. How does a 23 year old young man deal with all of that?

The hospital arranged for Andrew to attend a therapy session, but he had no real understanding of why he was there, what he was supposed to do, how he should be acting, what he should be asking, finding out etc. There were no explanations, just an appointment. Sadly his therapist concentrated more on Andrew’s then fiancee rather than Andrew, and so Andrew did not continue the sessions – which he desperately needed. He was left with no one to help him through the lowest point in his life except for us, his family. It broke all of our hearts to see him going through such hell. He was confused, angry, scared and feeling very much alone. He’d lost his career that he’d always dreamed of and he was facing the prospect of losing his life at the tender age of 23. We were all angry about it; Why Andrew? Why not me? How would I ever live without my best friend? It just wasn’t fair!

The hospital didn’t give Andrew or us any information or support so it was a bit of a hit and miss scenario when it came to dealing with the months of varying states of depression that Andrew went through. As a family we were struggling to know how to deal with it too. We had no idea what to do. It’s awful to watch someone you love so much go through such a horrible ordeal and not know how to help them. Andrew was clearly going through a range of emotions – which we now know were stages of depression and anxiety. It would have been so much better if there had been some kind of support, information, proper counselling and support groups. There were only a handful of people that were there during the difficult times – the majority of people in his life didn’t understand what he was going through, didn’t understand how hard it was for him, how lonely it was for him or what he really needed. None of us were educated about cancer or what came with it. The doctors had indicated that due to the locality of the tumour there was a chance that his personality could alter – but they were wrong. My brother was every bit the man he ever was. He was just a very sick man that desperately needed help.

After the diagnosis, Andrew was in no position to return to Kalgoorlie, so everything was packed up and moved back into my parents’ place. That was very difficult for Andrew as well because he’d lived out of home since he was 19 years old. Having worked hard and gained his independence, suddenly he found himself back at home with my parents and in need of their full support. He couldn’t work for a while, and he had no idea what to do with his life. There were big decisions to be made by Andrew.

I’ve watched my brother struggle to get through the difficult times, successfully achieve getting his life back together, go back to university and find something else to do with his life. To go from strength to strength – an incredibly difficult feat after what he’d been through. And I’ve watched as he’s gone back for his MRI scans year after year and each time he’s been told “it’s all good, it hasn’t grown back – we’ll see you again this time next year”.

It’s now been 10 years since that phone call and my brother thankfully is still with us and going strong. He’s still getting the all clear with his scans and he’s just been granted his medical certification back and he will fly again. Finally his dream will be realised! I’m so thrilled that the doctors were wrong. That Andrew was an exception to the rules. He broke the mould. He is living proof that miracles do happen.

Read other personal experiences from young people with cancer:

Natalie's Story
Jenna's Story
Kylie's Story
Nikki's Story
Bec's Story
Darren's Story
Lily's Story
Georgia's Story
Kylie's Story