We Talk Brain Tumours

i too have GBM4 diagonised in sep, and i really worry about what this is doing to my family and friends. im hemiplegic but otherwise healthy. but i had small seziure last week and im starting to get the wrong words when im speaking,some of the same systoms i had b4 debulkin although no headaches only a feeling of pressure in head, this worries me a bit. cant  seem to find any patients on this site it looks like its more carers, so i was wondering if ur loved ones experianced similiar systoms.

thank you

My fiance is 28 and has had a grade 2 astrocytoma brain tumour for 2 years, after his first op he seemed ok, but the op he has just had another debulking,and the drugs he is on has made him confused and his personality has completely changed.

It has really upset me, as he is tired all the time and sometimes says stuff that doesnt make sense. He has also been hullucinating and is very negative, which is understandable for what he has been through.

Its hard for me, as he lives in Scotland and I live in Essex. I'm planning on going to see him next monday, but it makes my stomach turn to see him so ill, he is in hospital at the moment. His face has completely changed, his eyes and nose seem drawn and his cheeks seem swollen.

When he had his first op. he seemed really well after, but it doesnt look good now. I don't know what the future will hold for us both. He has also not been able to get to the toilet in time and just stands there and goes, he isnt with it most of the time. Ive lost the friend i used to confide in. I want him better, but it doesnt look very hopeful. Also I dont think I can take this keep happening, as he was on the mend before christmas, he had been taken off the chemo, then in may it had grown back again.

Hello Lou88, I'm sorry you find yourself her with this illness.
Indeed, almost all who write on this forum are carers rather than patients. One lady who writes here, Debs, is a patient and she writes a blog too.
This is her page:http://community.macmillan.org.uk/members/_5F00_Debs/default.aspx 

I was wondering if you are normally able to manage the symptoms you describe with steroids? Or seen your neurologist since the seizure? I know finding the most effective dose can take some trial and error and some people take it almost all the time, others need it only around operations.
It must be unbearably worrying for you as well but speaking as a carer I can tell you that the only thing your family want is for you to be and feel as well as possible.
CH

Mandy, just to echo your thoughts.
Yes, what a very hard day for Gayle and her family. I'm sure all the lovely people who write on this site and who have been touched by bts share that sadness.
CHxx

Haven't been on here for a couple of days and what I have read fills my heart with sadness.  It is so frightening to me that this will be my dad's destiny - makes me feel really upset.  He has nearly finished 2 of the 6 week radiotherapy treatment and so far things are going reasonably well overall. Hopefully he will continue to feel well through the rest of the treatment and I will be able to have some quality time with him.  He is feeling really quite positive and keeps talking about getting his driving licence back.  I am not going to be the one to say this will never happen.  He might prove us all wrong, can't give up hope.

My heart goes out to Gayle, Martyn and all the other lovelies on here that are entering the last phase of this nightmare journey. I don't think I could cope if it were not for all you amazing people.  Anyway enough from me for now.

Take care everyone xxx

Long Distance Worrier,
My advise would be, know the reality of this illness, then try put it aside and never, ever give up hope. You can never be sure of the future.
That was our philosophy and it stood us in good stead for 2.5 years.
CHxx

That's great advice - Thank you!  I think I was having one of those "moments". 

Looks like we could all be having some lovely weather this weekend hope you all get some sunshine xxx

hi crazy horse (what a great name :)

im on anti seziure pills, only had 4 mild sezisures b4 op and none til that 1, just wondering if there could be new growth after getting last 1.never mind ill see on next scan in june so no worries. :) im not on steriods at all only for 3 days after op in sep. 

thanks for debs details ive read some of the posts. but with the nice weather im going to sit in garden. that makes everything right   

Hi Martyn.

sorry i havent been around to offer you any support, esspecially as you have helped me so much over the past few months.

Huge hugs to you and Doreen, I dont really know what to say but Im here if you need any support, even if i am a little new to it.

take care and chat soon ... huge hugs to everyone else and hope to be able to chat on here again soon xxxxx

fi xxxxxxxxxxxxx

Morning everyone - old and new

My thoughts are with those who have lost their loved ones and this weekend have also been with our very dear friend Lozzy xxxx