Brain Tumour Survivor

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PostPosted: Sun Nov 05, 2006 1:34 am 
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Joined: Sun Nov 05, 2006 1:20 am
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Location: Arizona
I find it so hard to find people out there that are dealing with a brain tumor that want to talk. Even on this message board I find many postings from the caregivers but very few people who are leading a new normal with a brain tumor. If you are out there, please say hello.


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 Post subject: brain tumour sufferer
PostPosted: Sun Nov 05, 2006 6:44 pm 
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Location: Sydney Australia
What a great website tricia . I was diagnosed with a grade II astrocytoma in Oct 2005, and a GBM in JUNE 2006. Had Sx on 6/6/06 scary. There isn't an hour of each day , while i'm awake that i don't think of it. but still enjoying life .All the best


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PostPosted: Mon Nov 06, 2006 12:57 am 
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Location: Arizona
Thank you for visiting my website. Okay, I think I would of moved the surgery date. I think about my cancer every day of my life, I will often tell other people that we are all terminal, to make them feel less akward around me, but lets face it they don't think about being terminal every day. What kind of treatment are you on and how are you doing?


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PostPosted: Mon Nov 06, 2006 10:58 am 
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Yep.

Oligo Astrocytoma Gr2.
Dx June 1996. Sx June '96. Radiation June '96.

Buggar all since then, besides taking a small amount
Epilim (Depakoke for Yanks) to control very minor,
infrequent fits.

Otherwise working and living normally.

Not sure if that fits your criteria "of actually having a brain tumor", especially as we Aussies speaka the Queen's English
and thus have brain "tumours" rather than tumors... ;-)

Cheers,

Andrew
Adelaide, South Australia


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PostPosted: Mon Nov 06, 2006 12:51 pm 
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Location: Arizona
Yup, that fits the criteria. Were they able to take out 100% of your tumor? I have the same kind as you. What is the definition of buggar?

Glad you are doing so well, that is awesome.

Tricia


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 Post subject: OligoAstroCytoma Gr2
PostPosted: Mon Nov 06, 2006 4:51 pm 
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Hi Tricia,

Hmm. "Buggar all" Meaning very little, almost nothing.

I'm basically 98% "normal". Only when I get stressed or sick with a cold do I tend to have very minor siezures, that last for 3-4 minutes, and just make my speech go a bit funny. I could probably control them by taking more Epilim in the morning, but I try to keep to the necessary minimum dosage.

If I know I'm going to have a stressful day, e.g. like visiting the wife's relatives, then I'll pop some more pills!! ;-)

As to how much of the tumour was removed, I was never given a
percentage, and have never asked for one. The tumour was in the
right frontal lobe, adjacent to the parietal (motor) strip. The surgeon didn't
go into the pariteal strip with her icecream scoop for fear of causing
motor deficits. On top of that I had the maximum 30 sessions of
radiation. and that's all the treatment I've had.

Extremely bloody Lucky is probably a good description of my experience.
Especially as I had a older brother die from a GBM 25 years ago, and
reportedly two brothers of my Father die from tumours back in the
50's/60's. Seems to be a male-line thing in my family.

Hence I'm glad I've got 2 girls, and no sons! ;-)

Cheers,

Andrew
Adelaide South Australia


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PostPosted: Tue Nov 07, 2006 12:50 am 
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Location: Arizona
Wow, I think we are identical as far as deficits are concerned. Once in awhile when I get real tired or sick or really stressed my spoken word is slow and I often cannot figure out what word I want to use.

My tumor sits on the left temporal lobe on my speach center, so they could not take all of it out.

Now for some fun stuff, the word Buggar would be spelled Bugger but since I come from the New England area of the United States and I have a very deep Boston accent I would pronounce it the same way as I think you would. Here is an example.

Worcester Language

Sure people from Worcester talk funny.
People from Mississippi talk funny.
So do Minnesotans, Oregonians and New Yorkers.
Especially New Yorkers.

The bigger question is why does Worcester have a
lake, a village, college and an avenue named Quinsigamond,
but they're scattered around the city like leaves in the fall?

No, it doesn't make sense unless you know that
the community was called Quinsigamond long before
it was called Worcester. It's an Indian word that means:
"boy, do these folks talk strange." If you're a newcomer
and you find the local language throws you for a loop,
we've assembled a handy guide.

Before we get to that, let's start with how not
to pronounce Worcester.

Don't make it three syllables. Just forget that
first E is even there. And never, never, never put
an H in the middle of Worcester. People will
make fun of you. So, how do you correctly
pronounce Worcester to make people think you've
been shopping at Spag's on Saturdays and going to
Water Street on Sunday mornings your whole life?

You've dropped the first E and boiled it down to two syllables.
Now eliminate both R's.
While you're at it, better get that C out of there.
Make the remaining sort of an AH and turn the O into a U.
Wuss-tah.
It doesn't rhyme with sister or rooster. The first syllable
rhymes with puss.

Go ahead and say it. Wuss-tah.

Now you're almost ready to walk into a spa in the village
and order a regular coffee and maybe a couple of tonics
and a grinder or club. One more thing. Always include
your state as part of your hometown, as in:
"I'm from Wusstahmass."

Confused? The following guide to the peculiarities of
the Central Mass. Dialect should help:

Bubblah - Water fountain

Candlepin Bowlin' - Invented in Worcester in
1880 by Justin P. White, and a far superior game
to Ten Pin, a form of bowling known locally simply
as "big balls."

Cellah - Basement

Club sandwich - Italian sub

Dine-ah - Good food cheap, but it's only a diner
if it was made by Worcester Lunch Car Co.

Dinnah - Lunch

Elastic - Rubber band


Frappe - Ice cream, milk and flavored syrup.
(A milkshake leaves out the ice cream.)

Grindah - Sub sandwich

Jimmies - Chocolate sprinkles

Package Store - Place to buy beer and liquor

Packy - Shorthand for package store

Parlor - Living room

Piazza - Porch

Pricker, Pricker Bush - A burr or other vegetation
that grows on a bush and sticks to your clothing.
Some use the same word for any bush with thorns

Spa - A corner store with soda fountain

Square - All rotaries are squares, but not all squares are rotaries

Three-deckah - Not a sandwich, but a house with three floors, big
apartments, hundreds of stairs and nowhere close to enough parking.

Soder - Soda

Tonic - Soda (of any flavor or brand)

How to say it:

Auburn - AW-bin
Aunt - AHnt

Berlin - BURL-in

Clinton - Klint'n

Ha'past - 30 minutes after the hour, as in: "we're
gonna eat lunch at ha'past 12"

Leicester - Less-tah

Leominster - Lemon-stah

Millbury - Mill-bree
New York - NooYawk (Rhymes with talk)

Northboro - Nohth-bro
(also, West-bro, South-bro and Marl-bro)

Petersham - Peters-am
Pizza - Pete-zer

Shrewsbury - SHOES-bree

Southbridge - Sowt-bridge

Tatnuck - Tatnick

Webster - Wep-stah

Westminster - West-minstah

With - Witch, as in: "Who ya got witch ya", or
"I'll be witch ya in a minute."

(Alternate pronunciation: Wit. "I'll be right wit ya.")


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 Post subject: saying hello!!!!!!!!!!!
PostPosted: Thu Nov 09, 2006 5:36 am 
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Posts: 2
hi my name is lorna, and i have a grade 2 astocytoma, and have epilepsy.
i was only diagnosed end of 2005, and had a steriotactic biopsy in march 2006, which confirmed a low grade glioma, and as yet have not had any treatment for this and agree with my doctor that i wait and see, he is very supportive and has my full trust.
today i met katie sheen, i attended a meeting designed to help people with low grade gliomas, and how tto get help and support for yourself and your family, it was a good day, today.
anyway, what was i saying, i have been reading all about the forum and am no good at typing, but i felt so relieved to see their our other people just like me and i felt like a peice of a puzzle, that i did not fit anywhere, but i found you and i feel as though i had found my puzzle, and i feel so happy that i am able to say hello to you all, i no longer feel i am on my own, keep on talking.
xxxlornaxxx :D


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 Post subject:
PostPosted: Thu Nov 09, 2006 7:24 am 
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Joined: Sun Nov 05, 2006 1:20 am
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Location: Arizona
Hi Lorna,
Where did you meet this Katie Sheen? I am so glad you found a group that will help meet your needs and your concerns. Many of us go for the wait and see approach, actually since my surgery and radiation I am also on the wait and see approach. The doc's didn't get the whole bt out so I am still living with the tick tick in my head. I think that if I live right, keep healthy, then I will be able to cut the right wire that will make it stop growing. At least at this point it is growing slowly, but I still worry about it all the time. You can read about me on my web blog.

Typing is not important in this battle. Live Strong


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 Post subject: hello again! tricia
PostPosted: Fri Nov 10, 2006 12:31 am 
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Posts: 2
hi tricia, thanks for your kind reply, its such a relief for me to be able to share the emotions i have inside me, they are constantly mixed, up and down all the time, i have a very kind and understanding family, but as you are aware how could they ever understand what dreads i go through every day, but sharing it with you, i know being on the forum has provided me with the upbuiding and answers, i met katie sheen at the neuro centre in liverpool, she was the founder of the astro fund, also she is very caring and happy to help and help us fight the fight, she doesnt have a bt herself, but does have the experience of family members having one, you can find out more info by going on the SDRT Astro Fund website.
you mentioned about reading your blog, and i have done several times, keep writing, its spurs me on, thanks take care for now and will chat later xxlornaxx


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 Post subject:
PostPosted: Tue Jan 30, 2007 10:46 am 
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Location: New Zealand
Hi,

Yep, we are out there. I had my GBM removed 5 months ago and am currently operating at close to normal capacity though i am still on chemo. I mountain biked 28km on sunday, flyfished the previous 3 days and the weekend before that tramped 3.5hrs each way with a pack. Now if only i was allowed to drive. My hair is growing back and I feel good but haven't started work again yet.


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 Post subject:
PostPosted: Tue Jan 30, 2007 11:24 am 
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Joined: Sun Nov 05, 2006 1:20 am
Posts: 10
Location: Arizona
Oh, I am so happy that you are riding and flyfishing. I have always wanted to learn how to flyfish. It is so good to hear from people that are positive and not giving up. Thank you for responding.
Tricia


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 Post subject: Hello :-)
PostPosted: Wed Mar 07, 2007 1:25 pm 
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Joined: Wed Mar 29, 2006 3:19 pm
Posts: 11
Location: NSW
Hi all, I'm another of your 'normal everyday living with a brain tumour' kind of person :) I had a grade 3 AA removed in May last year and feel great.

Am working full time (my own business), have 2 gorgeous kiddies (one is 1 yr and the other is 2.5 yrs), beaut husband, famiy & friends and just had my 30th birthday last Saturday :-)

Apart from a bit of lethargy I have no obvious signs anything was ever wrong - apart from a little explainable emotional anxiety and wierd hair in spots. Although luckily my hair is curly anyway so you can't really see the short bits :-)

Feel free to msg me and chat - I'm a web developer so am on the net A LOT :-P

Bye all!


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PostPosted: Thu Mar 08, 2007 1:21 am 
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Joined: Sun Nov 05, 2006 1:20 am
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Location: Arizona
Hi,
Where are you from? So happy to hear that you are feeling so well and a belated Happy Birthday. Two kids that is great, but I sure bet it keeps you busy. I know have 2 grandchildren, and I love them to pieces and I have 2 more on their way.

Tricia


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 Post subject: :-)
PostPosted: Thu Mar 08, 2007 8:40 am 
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Joined: Wed Mar 29, 2006 3:19 pm
Posts: 11
Location: NSW
I am another of that strange breed called Australians :-) heh heh - from Sydney - and you?


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