CHARLOTTE
Astrocytoma

People always say don’t let a brain tumour define you, but of course it does, especially in children and teenagers who’s formative years are spent in hospital. Instead, don’t let the bad bits define you; without a brain tumour, I know I wouldn’t be where or who I am today.

I was diagnosed with an astrocytoma a couple of months after my 13th birthday. I never had any symptoms suggesting there was a fist-sized lump unwantedly growing in my head; in the years that the tumour was growing I had a headache just once and was very rarely sick. The only thing that should have sent alarm bells ringing was that I couldn’t see out of my left eye. I don’t remember ever being able to see out of my left eye, as a child looking down my nose I could only ever see the right side, but as practically-minded 9 year old I put this down to the fact I had broken my nose – I know, logic abounds… Plus, it was never picked up by school nurses and my optician only diagnosed it as a severe squint when I was 13 – either the tumour grew very quickly, or they were even blinder than me…

The optician referred me to the local ophthalmologist who I saw in October half term; at the end of the meeting he very caringly broke the news to my mother that he ‘would throw his sombrero in the air if it’s not a brain tumour’. That night my parents decided to take me to Moorfields Eye Hospital and within a week I’d seen an expert who much more professionally explained that I had a glioma of the optic chiasm and atrophy of three of the four nerves; so I’m blind in my left eye and have hemianopia vision in my right eye. Because of the location of the tumour, surgery would likely have destroyed what remaining sight I had, so I was treated with radiotherapy at UCH.

I have no doubt that this time was harder for everyone else involved than me; it must have been a nightmare for my parents to be told their child has a tumour, and horrible for my 10 year-old sister to be passed between grandparents and friends when I had to be taken up to London for appointments; I don’t remember ever being scared about the treatment, I was mainly excited about missing time off school and getting to live in London. Sitting in hospital waiting rooms, and having MRI scans and blood tests soon became routine and everyday, and I used to look forward to seeing my doctors. My oncologist Dr Yen Chang and endocrinologist Dr Helen Spoudeas have both shaped my life, not only did they save it, but I’ve discussed everything with them from why I didn’t want to take Double-award GCSE science to whether I would loose my hair before a ball I was going to with my friends at Christmas – all the serious stuff. Radiotherapy was fine; obviously, I wouldn’t have chosen to spend every day for a month strapped to a table being blasted by radiation, and it certainly wasn’t how I, or my family had intended on spending our Christmas holiday, but Santa was very understanding about the change in address.

My parents did all they could to ensure I didn’t fall behind academically, so while undergoing treatment I was taught sciences by my Mum, French and history by tutors and I attended school on Saturdays; although, I wasn’t best pleased about the school bit, I was very happy to get to see my friends and do normal 13 year-old things. After the course of radiotherapy was over, I returned to school full-time and all was well (respectively) for a few months, until I became very sick, was unable to eat, lost a lot of weight and vomited at phantom smells. Despite an initially good response, my tumour had swollen, so to reduce the pressure on my brain I was put on hydrocortisone steroids; these worked and the tumour shrunk and died.

I was on steroids for a few years and it was one of the worst parts of my treatment; I could handle scans, radiotherapy, blood tests and having my eye poked and prodded, because that was mind over matter, but I couldn’t control what the steroids did physically. The antiemetics I had to take to be able to swallow the pills made me gag, all I could eat was vanilla ice cream – a normal teenager’s dream – I put on weight and I was tired all the time, waking up at around 6am and needing to sleep at about 3pm. The latter really didn’t help with my social life; while most my friends were playing sports or doing whatever normal teenagers do, I either had my head down a toilet or was fast asleep in bed. It soon became obvious that the cool-kids who had started off the year as my best friends didn’t have time to wait for me. In hindsight it’s fair enough, there was no reason for their social lives to suffer for mine; the good side was that I very quickly learnt who my real friends were and who I could rely on to help me through.

The hardest thing about having a brain tumour wasn’t the treatment, – my team at UCH, Moorfields and Great Ormond Street couldn’t have been more exceptional and supportive – but making others see me as a regular teenager, rather than as the kid that had a brain tumour. Returning to school full-time, teachers were scared to push me, and that seriously frustrated me. Only me, my parents and my doctors knew exactly what I was capable of (thanks to hours of cognitive tests) and drove and inspired me to challenge myself and succeed. Learning to channel the frustration took some work, but I found it helped to physically work out my anger. After GCSEs I changed schools to Westminster School in London, where only the teachers and pupils who I was comfortable knowing I had a tumour, knew.

I’m a bit of a nerd so I was driven by academics: within three years of treatment, I had 12 GCSE’s, all As or A*s, and was studying A Levels and Cambridge Pre-Us at Westminster. Five years after treatment, I got in to the Courtauld Institute of Art to study History of Art – I know, only slightly ironic that a girl with impaired vision choose a degree entirely reliant on sight – and within eight, I had a First Class BA and was starting an MA at the same university, specialising in seventeenth-century robots made by the Holy Roman Emperor, Rudolf II. I’m now 24 and am a writer, largely writing about luxury travel: I may only have half an eye that works, but I’m going to see as much of the world as I can with it.

I’ve always said I was very lucky with the tumour I had; it was a benign tumour caught at an age when I was old enough to have radiotherapy, and it responded well to treatment. It may not have been the ideal, but it taught me to push myself, to be independent and to go for what I want.

Insider Tips:

Bad hair days: Getting through is all about having the right people to rely on, even when it comes to your hair; I still see the same team at Charles Worthington now as I did when I had to have a fringe cut in to cover the arch of hair I lost from the front of my head and then again when my eyebrow fell out from the cold – how this didn’t catch on as a look, I still don’t understand… If your hair can’t look great, focus on other areas such as clothes or nails.

Talk about it: We are surrounded by people that care and who not only want to help, but are trained to. I am a master at bottling up emotions and refusing to seek help, largely out of stubbornness to admit I can’t handle something on my own, but it doesn’t help. One of the hardest things I did was asking for help when I was bullied, but it helped no end. Talk, people won’t know there’s something wrong unless you tell them.

Take your time: I had low cortisone (the get up and go hormone) for several years which meant I easily got tired. This can obviously be a problem when you have exams, homework, general life, so I found It helped to set timetables (particularly with revision) that meant I could ensure I got everything done I needed to without over-exerting myself.

You’ve gotta fight: Fight (not physically) for what you want and don’t let people tell you how you feel, that you can’t do something, or what you should be doing in life – unless it’s your doctor or the police, listen to them. At the end of the day, you are the one who lives with the tumour and its effects, so it’s up to you to set your limits and goals. Find what you love and what drives you; whether it’s a sport to keep the steroid-weight off, or the Uni degree that makes you want to revise, set yourself goals that will drive you to push through.