Arvin’s story
A serious car accident changed Arvin’s life forever. But it wasn’t the injuries from the accident that did it – they were minor. It was the MRI scan, that he had as a precaution when he went to A&E, that revealed he was living with not just one, but multiple brain tumours.
A shock diagnosis
Arvin explained:
They found six brain tumours. Six germinomas.
Surgery to remove the tumours, wasn’t an option, because the consultant said the operation would be too dangerous, so the tumours were treated with radiotherapy, and Arvin has been left with side effects of both the tumours and treatment.
One of the tumours had been on Arvin’s pituitary gland, resulting in diabetes insipidus, while another had been on his optic nerve, causing temporary partial loss of eyesight. The radiotherapy also means he now easily gets tired.
Additionally, following treatment, Arvin had a fluid blockade in the brain, and he suffered from massive memory loss, being unable even to recognise his mum.
Reactions of family and friends
Arvin’s close family have been very supportive, his friends much less so. Several of them didn’t know how to deal with the news and he lost touch with them. He said,
Before my first radiotherapy session, I had lunch with my best friend. We’ve been friends since nursery. I told him about my diagnosis and that was the last time that he spoke to me.
Not able to work and with no driving licence, Arvin felt very isolated.
New friends helped Arvin get his confidence back
But then Arvin found his local Brain Tumour Support group and things changed for him.
I have new friends now. Friends that understand what it’s like to go through radiotherapy. They understand that I get confused; and they understand why I get tired.
One group member even encouraged him to play the ukulele again, something he hadn’t done since his diagnosis.
Louise Tully, Arvin’s Brain Tumour Support Worker at the time, remembers the day he first played his ukulele in front of the group. She explained, “Arvin’s confidence has grown so much since he first attended Coventry Support Group. Seeing him play was a special moment, for me especially, as I could see how far he had come with his recovery.”
“Before attending the support group, I don’t think I would have had the courage to play in front of people. I would have been too shy to do that” says Arvin.
The members of the group encourage me and they have helped me get my confidence back. I don’t know where I would be without my support group.
Now Arvin is using his new-found confidence to help others. His blog features personal insights as well as hints and tips on living with the effects of a brain tumour.
