My name is Katharine Smith. On the 6th of June 2014 my life changed forever. I went to school like any other Friday, but after going for a coffee and heading to my last class of the day I began to feel unwell. Feelings of nausea overcame me and I thought I was going to vomit. However that soon escalated to my vision blurring and I couldn't determine if what I was seeing was real. I started to panic.
I excused myself from class, my friend in tow. By the time I was out of the classroom I was shaking. I needed to tie my hair back as I thought I was going to vomit but I couldn't remember how; I seemed to have lost the ability to do the most basic task. I had no idea what was going on, I was terrified. I got my mum on the phone, telling her that something weird was happening and she needed to come get me.
My memory of the events that followed is unclear. My friend tells me she had to get help, as I needed assistance to get to sickbay. I was unable to walk. My dad arrived at the school to find me in the middle of a seizure; the first of three before I arrived at the hospital.
Dad says it was the scariest thing he's ever seen.
Up to that point I had thought the coffee I had drank earlier in the day was at the very least drugged and I had sworn to never drink a coffee again.
The events that followed, for me, are very unclear but I do remember Charlie Teo coming to visit me later that night and telling me that I had a brain tumour. I broke down, not being aware of what this involved. I was scared, not only had I never had surgery, I'd never been in hospital before.
I was booked in for surgery the following week. The wait was agonising. Charlie told me that because of where the tumour was, I may suffer some form of paralysis, although he reassured me that I would recover, because of my age my brain is pliable and can ‘re wire’ itself. My tumour was in a part of my brain that controlled the left side of my body. Up until this point, I was at the gym three days a week, going out with my friends, and only worrying about the usual teenage things.
The night after the five-hour surgery seemed to go on forever. I don't remember too much about it other than being unable to sleep. I was moved from Intensive Care to my own room the day after surgery, where my recovery started.
Following surgery I had completely lost the movement in my left arm and left leg. My mum had to shower me, dress me, and get me to the bathroom. It was like being a baby again. Due to the amount of drugs flowing through my system at the time, I didn't fully understand what was happening. Charlie Teo said that the surgery had gone as well as it could and that the tumour he removed was the size of an avocado. He made sure the physiotherapy started as soon as possible so I was able to go home. I could hardly walk, even with a walking frame.
The drive home was daunting, as I knew there were two flights of stairs in my home. I had to be carried up the stairs to my room, and that’s when the severity of the situation hit me. Because of all the drugs in my system, I couldn't sleep. And I couldn’t go anywhere, as I couldn’t walk. I could not even comprehend what was happening to me. I found that I had lost the ability to hold a knife and fork, to type on a computer, pick most things up, to prepare myself any sort of food, go to the toilet by myself and to get dressed. I couldn’t even text anymore!
During the first few weeks, I felt hopeless. I put on a lot of weight, simply due to eating my feelings and sitting around in front of the TV. However, the determination eventually kicked in and my parents organized to have a Neuro Physiotherapist come to the house twice a week to help me learn to walk again. The Physio explained how the surgery had ‘wiped’ my brains memory in relation to the mobility on the left side of my body, and had to be re-learnt. I felt resentful of losing my independence and needing help, I freaked my parents out a lot when they saw me hobbling to the bathroom, terrified I was going to fall over, because I just wanted to get there independently.
I would lie in bed at night imagining getting up in the morning and just walking and getting up the stairs by myself. It made me realize how much we take for granted. You don’t even think about walking as a task, you just do it. I got to the point where I could kind of ‘walk’ if I was holding on to something, but my left leg had a mind of its own. Along with the rehabilitation process came the painful process of waiting for the pathology results.
When the pathology finally came, it was like a dramatic movie moment. Being told that you have the most aggressive form of brain cancer literally makes all time stop and all sound is blocked out. I thought I was going to faint. Firstly you cry, and then you look up into the sky sobbing asking “why me, what have I done to deserve this?”
Weirdly, I found it somewhat easier to deal with the fact that I had cancer than I could deal with not being able to walk.
At that point, life became all about doctors appointments. As time went on, my ability to walk kept on getting better; I was determined to be walking again by my 17th Birthday which was in July. I’m now at the point where I only have a slight limp, which is more pronounced when I’m tired, but I’m back at the gym and working on being able to run properly again.
Radiotherapy started in July and went for six weeks and required me to go to Royal North Shore everyday. The biggest side affect of this treatment was the partial hair loss and the tiredness. I’m also having ongoing chemotherapy via tablet for six months, which causes me to feel nauseous and sometimes tired. My hair has now slowly started to grow back.
The most confronting and horrifying moment through this experience came when I saw Charlie Teo for the first time after surgery. I don’t know what I was expecting, but I certainly wasn’t expecting to be talking about the average life expectancy for someone with this type of cancer and that Charlie expects the cancer to come back. It was completely gut wrenching. It took me a lot of time to process that information and learn to deal with it.
Three months after surgery, I went back to school and have now started my HSC course. I try my hardest to get on with my life as normal, and live as much in the moment as possible, not worrying about the future. It is not always easy. My new best friend is the MRI machine that I get to visit every two months. There is always a drama when I have to undergo an ultrasound to find a vein, which is often a painful process.
I know that I might need further treatment, which the foundation would help fund, and I feel humbled that people would help my family in covering costs associated with this treatment. I pray that I will remain well, and that any funds raised could instead be used to help the families of other young brain cancer patients with the costs related to surgery, physiotherapy, MRIs, or blood tests together with ongoing medication and treatments.
Katharine and her sister Eldon
Images of Katharine's brain post surgery - the cavity showing where the tumour was
Katharine undergoing Radiotherapy Treatment