Low-grade astrocytoma of the optic tract with secondary hydrocephalus
“I have never met anyone yet with the same tumour as me”
I was diagnosed with a low grade-glioma of the optic tract in February 2009 after having hydrocephalus, vomiting and headaches as my main symptoms. The doctors told my parents that I would have to have 18 months of chemotherapy to shrink the tumour. Before I had the chemotherapy though I had to have a VP shunt put in my head so there was water at the top of my brain. The shunt will always be in my body. It runs through from the top of my head down my neck and down by belly button. The doctors gave me the choice of having a button or a Hickman line for the chemotherapy to go through my body. I felt the button and it looked pretty frightening as it was inserted just beneath the skin where the needle would be injected. I chose the Hickman line because this looked like a less painful option.
I finished chemotherapy in September 2010. They were unable to remove the tumour because it was sitting on the optic nerve of my left eye and there would have been a high risk of me losing my sight. Going through chemotherapy was tough mainly because I lost my hair but over time I got used to the fact that I was going bald and my friends and family supported me through this stage of treatment. In the end we even joked about it and did funny impersonations of “mini me”. In August 2011 the MRI scan results showed the tumour had increased in size so I had 6 weeks of intense radiotherapy. Fast track 7 years and here I am now.
What life after cure is like?
Life after cure was not how I had imagined it would be. When I went back into school I expected to see my friends as they had been 3 years before but sadly everyone had grown up quite a bit and had changed friends and this made me feel left out. It was hard to get back into any friendship groups because I had quite a few hospital appointments so I was never able to make solid friendships. Some kids would question me why I would wear a hat throughout the day and I had to explain it was because I was bald. Until I told them, they would quite often make nasty remarks but after I had the chance to explain they were all very concerned and tried to make me feel as comfortable as possible. Some of the teachers were very kind and supportive. However I did feel that my parents were pressurised into getting me back into school on a full time basis faster than I would have liked. I would have definitely preferred to be more involved in the discussions and been allowed to say what I felt more comfortable with so I could have gone back more gradually. My education, however, had not suffered badly as I had home tutoring which was so helpful to keep me up to date with my school year. As time went on I learnt how to cope with not having very close friendships luckily with the support of my close family network. Thanks to them I was able to manage the most difficult times at school. One special teacher had a chat with me and told me that reading was the key to my education. I took on board this advice and I read many many books which indeed as the teacher said helped me out a lot during this tough time at school.
Having a shunt in my head is worrying especially with PE at school. I feel nervous that the ball may hit my head as the shunt is raised at the side of my head. I feel really nervous when it comes to any ballgames but the teachers are very kind and understanding and let me sit out if there are games I feel I cannot participate in.
My life has settled down enormously now that I have less hospital appointments. School is going really well and I am pleased to say I have lots of friends now and I am looking forward to taking my GCSE’S next year.
At the back of my mind I know anything can come up in the future but after going through the past 7 years, I have become a strong and positive person and will try to cope with whatever life holds for me. Having two older brothers and seeing how they have managed throughout school life and university has really helped inspire me and got me excited about going to University myself. I don´t yet know what I want to do in the future but I can at least now start thinking about that. I have never met anyone with the same type of brain tumour as me. That´s a weird feeling.
Things I found helpful
- Drinking lots of water. At least 1 bottle a day to keep hydrated.
- Having support from my family and friends really helped me through the tough times.
- When I feel unwell, my grandparents would buy me fresh coconut and made me drink the coconut water and eat the jelly this made which made me feel a lot stronger and helped hydrate me.
- Eating lots of fruit such as berries, grapes, pineapples, apples and bananas.
- Drinking nourishment drinks to give me energy.
- Relaxing and watching my favourite Disney programs such as Hana Montana, suite life of Zack and Cody and That’s So Raven.
My top tips for life after tumour
- Relax and enjoy life.
- Keep hydrated.
- Take every day as it comes.
- Try not to worry about things.
- Drinking nourishment drinks to give me energy.
- Always stay positive, never give up