About

I was 28 years old when I was diagnosed with brain cancer. The endless headache started not long after I got back from my first overseas holiday in Scotland. I tried to ignore it, but I knew there was something wrong. I thought it could be a brain tumour, but the idea of that seemed so ridiculous that I felt like a total idiot when I said it outloud for the first time.

I went to the first doctor after around two weeks of having a constant headache. I told him that I thought it could be a brain tumour. He dismissed it as a sinus infection, gave me a prescription for antibiotics and told me to come back in two weeks if I wasn’t feeling any better. Two weeks passed and by then I had started to feel a little queasy most of the time. The headache certainly wasn’t any better either. In fact, it had started waking me up at night. I went back to see the doctor, but he was a locum and there weren’t any appointments available at that particular surgery, so I went away telling myself  to stop being so ridiculous.

Things didn’t get any better though and my headache started taking over my life. I went to the second doctor and told her that I had a brain tumour. She didn’t believe me, claiming I was dehydrated and just had a migraine. I knew it wasn’t a migraine and I knew I wasn’t dehydrated, but she wouldn’t listen to me, so I went away telling myself to snap out of it because it really was just plain crazy to think that someone like me would actually have a brain tumour. I’m just imagining it I thought

I went to the third doctor after what seemed like an eternity with a headache that I could barely tolerate. On top of the relentless pain inside my head I’d also started to feel really sick and had to call in sick to work most days. On those days I spent a lot of time on the floor of the shower recess crying in agony at the pain in my head and also unbearable pain in my abdomen.

I told the third doctor I had a brain tumour, but he just laughed and said I’d be more likely to win the lottery. I pressed him for a scan, but he waved me away, claiming that scans were expensive and I was just suffering from stress. I didn’t know what to do after this, so I went home and berated myself for being a whinger and for being lazy and for making up stories about non-existent tumours. I was sick of being sick and I just wanted things to go back to the way they had always been;back to normal. Little did I know that things would never be the way they were, not back to normal, not ever again.

There were several more visits to the third doctor and finally after my boyfriend Ash (now my husband) carried me up the stairs to the surgery, the doctor agreed to a scan. The scan revealed a large and aggressive brain tumour. I was relieved more than anything, relieved that there was a tangible problem that could now be solved. It wasn’t something I was imagining and I wasn’t lazy or just whinging about nothing.

After an emergency craniotomy to resect the tumour, one of the surgeons visited me and said he’d never seen oedema like it. The swelling was so great that my entire brain had been pushed into one hemisphere. No wonder I had a headache!

I was euphoric after the surgery; there was no more headache. I’d been in pain so long that I had actually forgotten what it felt like to not have a headache. I didn’t realise at this stage that most brain tumours are cancer. I’d never really given cancer any thought, so I was shocked beyond belief when the neurosurgical registrar told me that my tumour was the most aggressive kind called Glioblastoma multiforme and that I had  3 – 12 months to live.

It seemed insane to me that I could die. Just like I’d never given cancer much thought, I’d never given my own demise much, or even any, thought. This can’t be real I thought, but it was.

I had 6 weeks of concurrent radiation-chemotherapy and approximately 2 years of adjuvant chemotherapy. It was pretty tough, but there were good times too, like the strengthening of many close relationships, the friends I met along the way and the life changing experience itself. It wasn’t something I relished at the time, but now I see the value in the adversity. Time does that if you let it, but I had to let go of so much, not all of it willingly, to get through the biggest personal challenge I have ever encountered.

Thirteen years later and I’m still here. The tumour never grew back. Basically, I’m an anomaly, but none of the doctors have ever acknowledged that.  I don’t know why I survived when others weren’t so lucky. I lost so many good friends along the way, that my heart breaks to think of them. I must be here to make a difference. I don’t know exactly what it is that I’m meant to do, but I follow my heart in the hope that it takes me to the right place.