Lily's Story

Having grown up with asthma and type 1 diabetes, several allergies and pretty much suffering every childhood illness that one can get, I used to joke with friends about what would happen next. I'd say 'next thing I get will be cancer'. Of course I never expected it to happen. I was 24 when my 'next thing' happened.

I hate to sound cliched but it was just another regular day, I arrived at work unaware that anything was wrong. Twenty minutes later I was on the floor having a grand mal seizure. After I came out of the seizure, I was fine, relatively speaking. This was just one more thing in what I call my lucky streak. I worked about a 45-minute drive from where I lived; luckily I didn't have the seizure while driving. As I fell I missed hitting my head on a bench by a matter of centimetres. The floor was concrete, but I fell in such a way that I only had a small graze on my elbow to show that something had actually happened. My boss was a former paramedic so knew exactly what to do.

I spent the rest of the day in the emergency department where they finally decided that there was nothing wrong with me and told me I probably just fainted and that some people twitch when they faint. I was thrilled. I wasn't going to tell them that before I fell I felt light headed, and when I went to put my hand out to steady myself on the bench in front of me I couldn't stop my arm from jerking. I'm all about denial. Thankfully my parents called my boss and he told them that I had had a seizure so they insisted that they do more tests, so they sent me for a CT scan. Next thing I knew I was admitted to the neurology ward. There was a lesion the size of a twenty cent piece in the left frontal lobe of my brain. I was admitted on a Wednesday evening, had surgery Friday morning, was discharged the following Wednesday. Just before I was discharged some doctors came to speak to me. They told me that I had a grade 3 Anaplastic Astrocytoma (brain tumour) and once my head healed I was to undergo six weeks of radiotherapy and possibly up to two years of chemotherapy. Needless to say I fell apart. Everything had happened so fast I was convinced that it wasn't anything serious. Then came probably the worst thing I have ever gone through. My parent's arrived and they saw that I was obviously upset and I had to tell them the bad news. All I really remember is my father breaking down in tears. My father is a very strong and stoic man. I had never seen him show any emotion and seeing this made me feel even worse for being the cause of such pain and sadness.

I felt, physically speaking, quite well in the hospital. As soon as I got in the car I felt nauseous. All the sensations of the real world were too much for my head to handle. I recall just closing my eyes and trying to focus on breathing until I was back home. Friends and family came to visit me in the hospital but even more came to visit me at home the following week. My head was all muddled. I was frustrated that I, the queen of multitasking, couldn't concentrate on one thing for more than five minutes. I don't like attention and with this seemingly endless procession of well-wishers I kind of felt like I was in a freak show. People didn't know what to do or say. I felt so incredibly bad for making people uncomfortable and upset. I tried to make light of the situation but I guess they felt that it would be inappropriate to laugh. I just wanted them to be normal around me. I had a wonderful boyfriend who just couldn't deal with me being sick. I didn't want to talk about it much, but when I did he was the only one I wanted to talk with. He wasn't too keen on that idea. His way of dealing with it was to not acknowledge it. My father was much the same.

I went through six weeks of radiotherapy which left me bald in patches. I had such beautiful hair and then I didn't. I was on steroids to control the swelling in my brain, which made me blow up like a balloon. I was physically and emotionally a different person. Thankfully, as much as I tried to push people away they didn't go anywhere. I was vulnerable for the first time in my adult life; I let my guard down because it was too much effort to keep it up. I think if anything it strengthened my relationships, especially with my mother. I came to understand that people have their own way of coming to terms with trying circumstances. There were those like myself that chose to make light of the situation, a few chose denial, others went the mother hen route making a huge fuss, some just let me know that they were there. My illness wasn't only my problem. Everyone who cared about me was involved.

After the radiotherapy I was given the choice of having chemo or not. The surgery was as successful as it can get as they removed the entire tumour; radiotherapy was required to try and kill off the 'tentacles' that brain tumours have. I didn't really think about it. My neuro-oncologist put it to me in very simple terms. He said I could have the chemo now or I could wait until the tumour grew back and then go through it. He briefly mentioned the fertility issues. He told me that he had patients who were in similar situations to myself and chose to get pregnant and then have chemo after the baby was born. I was in a serious relationship but we weren't ready for that. I've never dreamt about having kids, I decided that it wasn't really an issue for me. If there comes a time when I decide that I want to have kids, I'll just have to see what happens. I had chemo every six weeks for just under a year. I had to stop the treatment because there were signs of scarring on my lungs caused by the drugs. I wasn't sick at all during chemotherapy. I joked that if I had to go through this huge ordeal I should at least get sick and lose some weight. My sense of humour is a little twisted. I recall going to bars with my friends as soon as I felt well enough and saying I've got cancer; the least you can do is buy me a beer! These little jokes of mine were initially met with horrified looks, then as time went by, nervous laughter and eventually people would openly crack jokes and laugh with me. That's when I knew that everything was going to work out.

So it's been almost four years since diagnosis. I have check-ups every six months. I'm pretty much the same person I was. I just have a huge scar on my head which limits my hairstyle options. Even now people say to me things like 'You are so brave', 'I wouldn't be able to handle it', 'You are amazing' and other things along those lines. I find this quite funny. I didn't have an option. I didn't wake up every day and look in the mirror and say 'I am so brave, I will fight this, I am not going to die, I am the best person in the world and I will survive', etc. I woke up and got on with it. You do what you have to do. To me it's not a matter of bravery or strength, it's just life.