........At least I have my gorgeous lee :-)
Starting to feel really poorly now.
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My diary/thoughts. After being diagnosed with a brain tumour in december 2008 my life has changed dramatically in a lot of ways. Some expected and some that have surprised me! Just wanna get out some of my feelings, thoughts, experiences and all the crap in between. It's up to you if you wanna have a peak and read it.
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About Me
- Just Jane
- I'm Jane, Aged 36 (just) My family.... Lee, Aka 'my Lee': The love of my life and husband (been with Lee nearly half my life already!) Jamie: R gorgeous little man, now 8yrs old (he was 2 when I was diagnosed) My personal journey now, is to discover the new version of me. (lameO) :-)
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The Brain bit for People that wanna know
I have a Diffuse Astrosytoma Grade II (Low Grade Glioma).
It is on the Left side of my frontal lobe.
Have had a biopsy to confirm prognosis.
Surgeons have said its too risky to operate (so basically inoperable).
As a result of the tumour I suffer with epilepsy, simple partial seizures & generalised seizures. I am currently on 2 different AED's and am living with uncontrolled epilepsy.
Treatment: Wait and see, get scanned every 6 mnths.
It is on the Left side of my frontal lobe.
Have had a biopsy to confirm prognosis.
Surgeons have said its too risky to operate (so basically inoperable).
As a result of the tumour I suffer with epilepsy, simple partial seizures & generalised seizures. I am currently on 2 different AED's and am living with uncontrolled epilepsy.
Treatment: Wait and see, get scanned every 6 mnths.
Just watched today's videos. What a neat hat...although I'm sure you wish you never needed it. Would you be interested in receiving a knit hat from me, a BT caregiver? My hubby had problems with hats for winter after his radiation (summer 2010) and I knit one that didn't seem to bother his sensitive head.
ReplyDeleteAlso, wasn't sure if anyone had commented yet or not about the brown spot that looks like a burn from the radiation...that will go away. Hubby's took about 5-6 weeks before they were gone.
And, his hair has grown back everywhere, just thinner over his left ear (his BT is in his left temporal lobe). His hair loss was similar to yours.
Anyway, glad to see that you're almost at the end. Take it easy on yourself...this is shit for you to have to go thru.
Danielle
Hi danielle,
DeleteThanks for posting my sweet.
My consultant yesterday said she does see patients with mask marks but has never seen them as bad as mine before!! (Story of me really) Thanks for chatting about that.
I would love one of your hats & give one a go. No pink tho please!! thank you so much, very sweet of you. It's my forehead that is mega sore at the moment x x
Lee is a star and you are mrs amazing, how impressed are you I am becoming a techspert! Xx
ReplyDeleteohhhhh it's you!! I thought this person must know us!? WHO is it...tick tick boom.
DeleteHad to de'cripte your blog name :-) xx
Ugh, I can't get my computer to hit the reply button. Jane, send me an email at dan_scrapbook at hotmail dot com and I can get your address. It will only take me a few days to whip up a hat for you!
ReplyDeleteAnd, we didn't realize that the spots were marks from the mask! LOL! Never even occured to us really. How crazy is that!
Danielle