Brain Tumour Survivor
http://www.btsurvivor.com/bb/

New to this site
http://www.btsurvivor.com/bb/viewtopic.php?f=2&t=2339
Page 1 of 1

Author:  lovelife [ Fri Jul 13, 2012 10:20 pm ]
Post subject:  New to this site

Hi all,
As with most people I suppose I'm a little lost here, I was diagnosed with a Grade II Astrotomya Glioma in Nov 2008. I had an awake crainiotomy in April, 2009.
They couldn't get all my tumor (right frontal lobe) as it was graphted to good brain matter but they did get about 90 per cent.
I have been having regular MRI's since on a 4 monthly basis, however now they want me to do 6 weeks of Radiation as there has been an increase in the size.
I honestly thought (or wanted to believe) that I had this thing beat, even though they gave me about 5 yrs 3 1/2 yrs ago. I have already suffered slight slurring of speach (especially when tired), weakness on my left and loss of balance.
I suppose what I'm after info on is anyone that has gone through Radiation and what there experience was??

Thanks for listening to me and wishing everyone a health life

Author:  kenobewan [ Sat Jul 14, 2012 5:46 am ]
Post subject: 

Welcome to the site.

If you are showing radiologic changes and side effects, then it is unfortunate that you going to need further medical treatment. Its your health and you need to decide, in consultation with your doctors, the course of treatment.

This is a difficult stage, but I had all the symptoms you describe and I am here 5 years later. This is not the end of the road, you love life and there is hope. See the survivor stories on virtualtrials.com if you need some inspiration.

No I haven't had radiation. I was offered it and turned it down, so I can't tell you what its like. What I can tell you is that each specialist made a convincing argument for each, even though I chose only 2 treatments.

This is a terrible disease and the statistics are grim. Do you believe statistics? I've tried my best turn things around so that more than 80% is within my control and gives me hope, the rest I can't control. This is easier said than done when you are showing new symptoms.

All the best with what you decide :). My signature is also my basis for hope. It is my hope that through energy I gain more life!

Author:  lovelife [ Sat Jul 14, 2012 11:34 am ]
Post subject: 

Hi,
Thank you for the reply and welcome, it's much appreciated. I haven't give up hope yet, I just find this whole Brain Tumor thing so frustrating. The biggest problem I feel is the difference in opinions even with specialists, my nuerosurgeon is defineatly saying it's time to do radiation, so I suppose that's where I'm at.
I've been forever grateful for how far he has got me to date, I suppose I'm just a little selfish here in the fact that I know I have another tough road ahead. I'm a single mum with 3 children, I have a full life, I have 3 horses (which I will say are an inspiration in themselves, besides my children of course)!
Over the past 3 1/2 years they have taken my licence of me several times and being such an independant woman I find each time they do it chips away at my worth....unfortunately I live in an area with poor public transport.
I find that I don't really have people to talk to about this matter at all, my parents are extremely supportive of me, however they are so paranoid that I find I'm the one trying to ignore my problem, my children all cope in different ways and I don't discuss things too much with them. Then there is the people around me that are either in denial or just plain don't want to know, so I do supress alot of my emotions.
Talk about a roller coaster lol, my treatment will have to be done in Sydney and I wonder how I'm going to cope with the Radiation, the daily travelling and my day to day life, however I do know that I'm not the only one in the same position.
I am just so frustrated as all I want to do is live life and I'm naturally scared that the radiation will take even a bit more of me away.
Anyway enough raving....I love your signature and I really do thank you for your time! I will certainly check out the site you recommended.
Cheers Kenobewan

Author:  kenobewan [ Sun Jul 15, 2012 7:25 am ]
Post subject: 

Hope - that's one thing they don't learn about at medical school.

No need to apologise I feel the same way. The longer I survive the more time I get to spend with my family. My advice is to try not worry about what you can't control - easier said than done.

I watch my favourite comedians and read survivor stories for inspiration.

It an unfortunate roller coaster ride, especially in the hospital system. It's enough to make anyone frustrated. Its so unfair - why us? There is no answer.

All the best with your treatment! Its by supporting each other that we give each other strength :).

Author:  lovelife [ Sun Jul 15, 2012 8:52 pm ]
Post subject: 

Hi kenobewan,
Thanks once again for your response, support and encouragement....it's so nice to be able to speak with someone on this level.

Hope is the major thing I believe we all hold onto and inspiration never goes astray either, lol.

As for the why us - I never really think that way, I believe that somehow be it god or just the universe as such, dishes us all only what we can cope with in life...however I do believe that we are allowed to feel somewhat frustrated at times :)

You have been a wonderful person to share your thoughts with me, I really do appreciate that.

Cheers

Author:  Jesse [ Sat Jun 15, 2013 5:04 pm ]
Post subject:  Re: New to this site

Hi lovelife,
Welcome to the btsurvivor forum and to learn more from here stay active as you will find lots of informative threats with useful posts and helpful links. I am also new and hope to see you around the btsurvivor forum.

Author:  Hamlin [ Tue Jun 03, 2014 4:43 pm ]
Post subject:  Re: New to this site

Hello!
Welcome to the forum.
Me also a newbie for this site and just joined this forum.
It's a good place to discuss about the brain tumour treatment.
Hope we will get all necessary help at this site.

Author:  camexonda [ Mon Jun 16, 2014 8:23 pm ]
Post subject:  Re: New to this site

Hamlin,
Thread author has created this post in 2012 when joined this forum, And it's too old now. I don't think so it's good to say welcome to the author of this thread in 2014.
You can say welcome for me, because I'm a new member of this forum just like you.
My name is Cameron Dallas, I'm 22 years old, from Florida, USA.
I;';m so thankful of the administrator of this forum who has accepted me as a member of this useful brain tumor based discussion community.
Welcome to the forum by the way.

Page 1 of 1 All times are UTC + 10 hours
Powered by phpBB® Forum Software © phpBB Group
http://www.phpbb.com/