Along For the Ride
Name: Hilary S.
Type of Cancer: Grade II Ependymoma
Diagnosed: Age 27, 2016
— Categories: Adult Brain
Along For the Ride
Looking back now, it’s hard to believe I didn’t notice any of my symptoms until they became too severe to ignore. I think that’s the difficulty with tumours. They grow slowly so the onset of symptoms is so gradual that it’s difficult to know that something is very wrong. I was tired, lethargic and sometimes sleeping 14+ hours a day.
Last year, when I was 27, after working full-time for some years as a graphic designer, I decided to go on a big adventure travelling around Northeast Asia and spending my hard earned dollars on experiences. I was travelling solo for nine months and most of the trip was by bicycle, so that’s a fairly good reason to feel tired?!
My Tumour Made Its Presence Known
It was when I was in Mongolia that I really started to feel unwell. Drinking lots of cups of coffee wasn’t helping my exhaustion anymore. And once the unrelenting vomiting began, I simply thought I did not boil the tap water properly (since Mongolia is an underdeveloped country). Curiously, there were no headaches, however during this time I sent a strange message to a friend, “Hey, do you know what it means when your head throbs in your ears and around your eyes? Like a whooshing sound - the same rhythm of your pulse?” It’s quite disturbing to read that now knowing it was a tumour causing that sensation. As a healthy 27-year-old, I would have never guessed in a thousand years that I had a tumour.
One night in Ulaanbaatar (the capital of Mongolia), after days of vomiting and unable to keep food and liquid down, I started to feel very worried. I knew I was dehydrated and my level of exhaustion was like nothing I’d ever experienced. But I felt sure it was a stomach bug from the drinking water. I went to a hospital in Ulaanbaatar and was put on a drip (IV fluids) for a couple of hours before stepping outside again in the freezing snow.
I continued to feel unwell for days but never ended up getting the anti-nausea drugs the doctor prescribed me. My return flight home was so soon I just decided to just soldier on. Surely all I needed was to go back and rest up. Once I finally got back to Melbourne, for ten days I slept on my friend’s couch, and I progressively became more ill and weak. I stopped caring about my hygiene and my hair was matted at the back of my head. Every time I ate, the food came straight back up. Often onto my clothes or blanket I was lying in. At this point I believe I was incapable of getting help, and even refused to go to hospital. My personality was foreign to my best friend of 15 years. Luckily, my friends persisted and convinced me to let them take me to the nearest hospital. There I was given a CT scan after they told the doctor my personality had changed. The scan revealed a tennis ball sized mass which turned out to be a grade II frontal ependymoma.
“Oh… that’s no good,” was my response apparently. I don’t have any memory of this or much of the two weeks prior to my hospitalization. The lights were on but there was definitely no one home.
Due to the urgency of my situation, I was scheduled for surgery right away and had two 8-hour brain surgeries. As it happens, my neurosurgeon is probably the coolest person I’ve ever met and I felt safe putting all of my trust in her hands entirely. I am so lucky that they took me to the nearest public hospital, which happens to have one of the best neurosurgeon teams in Australia.
Renewed Appreciation for Life
I realize what an enormous privilege I have to access public healthcare without any insurance. It’s not fair that most people in this world live without this human right. If I lived in a developing country without advanced medical facilities (e.g. that hospital in Mongolia) I would probably be dead by now.
It’s so damn scary that a tumour can just start growing in your brain without you having any idea until it’s big enough to almost kill you. It has taken months for me to process the fact that I had a brain tumour, but now I’m okay with getting routine MRI’s for the rest of my life. I hope I can retain this completely renewed appreciation for life and my health for as long as possible. There are so many people who don’t get to move on after a tumour.
As I was struggling to come to terms with the whole experience and looking at my future, my psychologist told me a simple but fitting analogy, “Imagine your life is you driving a bus. Your tumour is a passenger sitting at the back of the bus - it’s not at the wheel steering where you will go. But now you are aware of it, and it’s just coming along for the ride.” I’m lucky to be recovering with my supportive family and I am making a good recovery, hopefully to my best health ever!