I'm a brain tumor survivor - Optic Gl... - Survivors of Chil...

Survivors of Childhood Brain Tumours

I'm a brain tumor survivor - Optic Glioma

Lizzie-13 profile image
10 Replies

Hi everyone! I am a survivor of a brain tumor called an Optic Glioma. I am partially sighted in my left eye and near to blind in my right, and I have been through chemotherapy, radiotherapy and a variety of other treatments. I am very keen to share my knowledge and help others as much as I can, so do ask me questions and hopefully I'll give you some answers! :-) xx

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Lizzie-13 profile image
Lizzie-13
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10 Replies
alanboo profile image
alanboo

Hi - me too - happy to chat and help if people have questions or just someone to talk to. Hope everyone is doing ok in these crazy times. !

SuccessCharity profile image
SuccessCharityPartner

Hi Lizzie -13. It's lovely to have you join our community. Hope that you are keeping well and staying safe. Thank you for offering your share your experiences and answer questions. We will publicise our community widely this week so I'm sure there will be many people coming on line to say hello!

Hi Lizzie,

I hope this message finds you well. I am a low vision support specialist and I would like to understand more about the specific experiences of people who have reduced vision as a result of a brain condition. I would like understand any gaps in the services currently available in order to design a holistic support service to support the impacts for individuals and their families. Any experiences or thoughts that you think may be useful and you would like to share would be much appreciated. Please feel free to contact me anytime on lvsmanager@hotmail.co.uk.

With very best wishes

Scarlett0H profile image
Scarlett0H in reply to low-vision-support

We have many VI youngsters who could share their experiences..... some with multiple sensory impairments after brain tumours ; do contact us at info@successcharity.org.uk if you have ideas about running a survey - gaps in service is what we are trying to fill !

Scarlett0H profile image
Scarlett0H

Please think about becoming a peer mentor Lizzie ….. through success website ! maybe that's a good way to share knowledge and strengths?

jedistar profile image
jedistar

Hi, you Ok. I've been away down in Manchester for a funeral. Back now though xxx

Lizzie-13 profile image
Lizzie-13

Hi I'm good thanks. I'm going on holiday in a couple of days and I'm really excited! How are you? I'm sorry to hear about the funeral. Xx

jedistar profile image
jedistar

Yeah, he was my best friend in C.R.U.K, Prestwich, and died of Leukemia at only 56! I'm SO angry with the unfairness of it all.

Where are you going on holiday by the way?

Lizzie-13 profile image
Lizzie-13

Oh I'm so sorry!I'm going to Edinburgh, Durham and York on a little exhibition by myself. I'm quite excited actually 🙂

jedistar profile image
jedistar

My Mum's from Durham. Whenever she goes back there her accent comes out automatically, it's really funny .

Hope you have a great time xxx👍😊

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