Hi, I'm new here. I was successfully treated for a Astra-Cytomel brain tumor back in 1990 when I was 5. Though dead, the tumor is still in my head, rapped round my brainstem.
Although I suffer from other side effects of the tumor and Radio Therapy, such as hearing loss and Epilepsy. Despite this, it is my dream to become a published picture book author.
Go for it! You can do anything you put your mind to. My dream is to have a cross-stitch (sewing) shop, and I'm 3/4 blind! Sewing is my passion.
Hi Lizzie
Thanks for the encouragement! I sponsor a guide dog called Bonnie and am virtually deaf, so know how rubbish it is to loose one of your vital senses. People just don't understand unless it's happened to them! Where abouts are you? I'd love to be able to pop into your shop one day, lol! 😘👍
Haha! 😄 it's not set up yet! But who knows, maybe soon. I'm currently living in Surrey, Ashtead. Not sure where I want to set up shop.Your so right - it's impossible to imagine. You live with it everyday, and yet you're expected to carry on as normal. That's why I feel like sewing is my superpower. 🥰
Hmm, now you've got me thinking! A superpower!
Well, I suppose mine is 'Toddler Taming', and telling stories. Haven't decided on the costume though, lol.
Have you heard of the trick to tell if a kid is lying? You tell them that every time they lie, a beam of light comes out of their forehead that only adults can see. Then, when they lie, they put a hand over their head to stop the 'light', lol. I know it's mean, but it works!
I'm in Porthmadog, north Wales, so probably a bit too far. Let me know if you get a website though!
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Haha 😄 will do! x
Sorry, no. I went to GOSH when I was 3-6ish for chemo, then UCLH for radio when I was about 8, then I transitioned through the Macmillans teenage centre.
A lot 😊I actually wrote a short book about everything I could remember just to get it off my chest, but you're always adding. I actually added more two years after I wrote it because I had epilepsy and wanted to add it.
I wasn't allowed to have radiotherapy when I was first diagnosed as I was too young and it was too risky. At first no one knew what was wrong with me, because I couldn't tell them what was going on. I just kept complaining of headaches, and with hindsight there is a picture of me shielding my eyes because they were really sensitive.
I've got epilepsy too. I had my 1st seizure on my 21st birthday and am on 16 tablets a day for it. I finally found an anti-depressant that really helps with the anxiety though. What about you?
I got really bad headaches when I was 5 and didn't blink with the left eye.
We came home early from holiday and I saw my Dr. He suspected the tumor immediately. The rest is history, not stuff I particularly want to write down but would be willing to do so to help explain to young kids what it's like. I'm 38 now so a lot of the experiences faced by children treated now will be different. Do you think mine are still relevant to a child being treated for a brain tumor today?
What year did you have your treatment? I'm wondering how old you are. lol
Laura x🙂👍
Hey Laura,I got my epilepsy in sixth form - had my first fit in biology lab and got taken to hospital. Got better under medication, then a year later developed petit mals, and a few months after that had another fit. Had some more fits at home then was finally under the right medication. I was asked to leave school early because they couldn't monitor my petit mals 24/7, and only completed 60% of 2 A levels.
I'm off medication now though, and I believe it was all due to stress and depression.
To answer your question, yes I think your experiences are still relevant. I believe there is an ether between people who've had a brain tumour - that we all have at least one thing in common, whether its a personality, hobby or experience.
Just read back on our chats, and thought I'd let you know that Lizzie is my pseudonym - my name's Sophie 😊 and I'm 24, so a bit younger than you.
OK, this is getting weird now! My youngest sister is called Sophie to, lol She's 9 years younger then me.
I was bullied so much at high school I had to be home educated the last two years, so I only have 5 GCSE's. I then had to spend 3 years doing my A levels and 5 doing my Degree, all thanks to my condition! Honestly, some kids don't know their born! lol, now I'm ranting on, but it's true
Hope that doesn't sound snobby of me, but I'm still very bitter about the way I was treated in high school😒
I just think where those people probably are now! lol🙂
Do you find that your very keen to take care of your body as best you can, due to it being damaged by the tumor? I don't drink, smoke, or ever taken illegals drugs. I have been a vegetarian since I was 11, and am now mostly Vigan. What about you? 😘
I suppose so ... I don't drink, smoke or take illegal drugs (as you put it), but I'm concerned about my diet. I have been a fussy eater ever since I started my treatment, and find it hard to try new things. I put weight on during lockdown, and I'm try to find the right work/ exercise balance.As for school, me too. I still have bad dreams about being back in school. For me it was all about being treated differently, social anxiety, stress and pressure.
Have you ever tried any of the meat substitutes out there, such as Quorn? I can't remember what real meat tastes like, but there are so many alternatives now to try, some that taste more like it then others.
I could give you some suggestions if you want. Last year, my friend Tara asked her boyfriend not to eat meat for a month. He's not gone back to it since, lol
That's exactly how it was for me : rejected by virtually the whole school for being different. I still have bad dreams about it all too.
Do you read a lot? I'm a bit of a 'Bibliologyst' myself, lol ( someone who collects books but doesn't read them, apparently)but I do intend to read them all eventually. My favorite book is Lord Of The Rings and you can probably guess my favorite film, lol xxxxx😘👍
I try to read, but I'd say I'm more like you. I buy lots of books, but take ages to actually read them. I find reading exhausting sometimes as I can take me about 30mins to read 4-5 pages. OK, don't judge me, but I haven't read Lord of the rings. My favourite book is Heidi, but I'm a big fan of all the girly classics like the secret garden and pollyanna.
As for films, I'm obsessed. I used to collect DVDs until streaming suddenly became huge and everything became available that way.
Have you ever thought about audio books? The BBC do amazing full cast dramatizations of all the classics, both children's and adult, such as Hitchhikers Guide to the Galaxy, Pride and Prejudice, Wind in the willows and The Railway children, to name but a few.
Unfortunately, Amazon have taken over a lot of the audio book industry, and you have to subscribe to get unlimited access. but I get mine second hand , E-bay etc. I refuse to buy from Amazon on principle! 🧐
Steven Fry does a wonderful narration of the Harry Potter books, and no one can beet Martin Jarvis reading Just WILLIAM!
I'm a big fan of radio comedy shows like 'I'm sorry I haven't a clue' and 'Just a Minuit'. 'Dead Ringers' is my favorite though, lol! 🤣
The best BBC dramatisation is this one! archive.org/details/the-lor...
