Blog: Josh’s story

The profound side effects of brain tumour surgery still disrupt and dominate life for Josh, his parents and his three siblings.

At just 18 months old, Josh was diagnosed with a low grade astrocytoma brain tumour and underwent immediate surgery.

He temporarily lost his vision and when it returned he remained partially-sighted. Josh, now 16, still lacks forward vision. His parents bought safety goggles and taped over the parts that affect Josh's vision to help his friends understand how he sees the world now.

“My brain tumour has resulted in a restriction in my vision. This has led to me being uncomfortable in big unfamiliar areas. As a result of this, I don't go into town often because I do not want my friends to be focused on me being comfortable instead of enjoying their trip into town and having a fun and relaxed time.

“I have difficulty joining in with sports and any activities after dark. If I go cycling I need a partner that understands I need some hazards pointed out as I may not see them. In terms of general restrictions, my visual impairment caused by my tumour means that I will never be able to drive a car; this in itself means that the ease of travelling will be reduced.

“It's been hard to gain the understanding of my friends because they don't have any experience of the effects that come with having a brain tumour. Generally I manage well and so my friend can't see my disability or how it impacts me. To help friends to understand, my parents have already helped me by making goggles that show the visual restrictions that I have. This has helped some friends to appreciate how my visual restrictions make simple things like walking on uneven terrain hard for me as I have to focus on each step, this was particularly hard when I did my Duke of Edinburgh. I also think that I don't make my tumour and my disabilities the focus of my friendships.

“I don't introduce myself as Josh and I have a brain tumour. I try to join in with most things like everyone else.

“My advice for others would be; Keep your head up, don't let people push you around and always stay positive. If you experience bullying from people about any problems caused by your tumour, tell someone. Don't be afraid to tell teachers what you need, I often have to remind my PE teachers why I'm no good at ball games, and I also need to be sure I'm sitting in the correct place in class for my vision.

“If doctors don't restrict you from an activity that you have an interest in, then have a go at it and see if you enjoy it. A couple of sayings I like are 'Challenge yourself a little every day' and 'things turn out the best for those that make the best out of how things turns out'

“I thought this blog might be helpful to others to hear from someone who has experienced most of their life with a tumour, to help to eliminate some of the false impressions about living with a tumour and the effects it has on children.

“I hope it helps people appreciate that the disabilities children with brain tumours have often can't be seen and that it will increase awareness for the need for more research into brain tumours.”

Josh is featured in our latest report, Losing My Place: The Reality of Childhood with a Brain Tumour, which is based on a survey of almost 300 young people and their parents following a childhood brain tumour diagnosis.