Hi kayleigh, how are you. I have a grade2 tumour and about to have my next mri to see if there is any change, I feel mine will also be grade 3 as I can feel the effect it's having on my body, I also find it's heavy on my mind and the worry that comes with it, well I hope we can chat and maybe help each other along as we are going through the same thing,  mine is a mixed glioma and is above my right ear. I suffer memory problems and weakness in my left arm, I'm also finding it hard to concentrate on things I used to take for granted.

Hi Carl.

lovely to hear from you. You seem to go through/gone through the same situation. I was diagnosed with grade 2 brain tumor 2 years ago, I still can't believe I actually do have a brain tumor, can you? Iv had lots of MRI scans and I have it every time, I don't know about you. I found out after my last MRI and the end of June that I needed a 3rd  brain operation. I had it on the 8th July, left on the 11th then I was asked to go back to see my surgeon 2 days later as they had info to tell me. He told me that the operation went well but it had changed to grade 3. Me and my family were deversated and in tears. I now have to have radiotherapy. I'm sooo scared, I'm terrified, stupid and stupid to moan about but I'm sooo scared of loosing my hair. I keep looking for groups to join to talk about things, but I feel that Iv lost a lot of my confidence. I keep waking up on a morning hoping that everything is back to normal. I'm very scared, worried and nervous.  I don't no clue when all this started, apparently it all started with seizures but I thought they all were panic attacks as I'm very shy and nervous, but their not. I still have seizures now and likely for the rest of my life... I hope I haven't scared you.

I have had seizures myself I didn't know what they were until I read about how the tumour effects us, don't worry you have not scared me as I have accepted my Fate with regards to my illness, I think the hardest thing I find is all the waiting, seems like we wait forever with everything, have the doctors said you will lose all your hair as I'm sure some people just say it thins out a little, the biggest effect is tiredness. As if our brains have not been through enough already,

I don't think your stupid & I have also had the emotions at times you describe, sometimes I even think the doctors got it wrong but then my left arm going numb or me forgetting things reminds me it's very real, does yours cause you problems in every day life?

I get what you mean about not thinking it was real, i thought exactly the same and like you i have come to terms with it, when you say a time table are you meaning how long you have to live? all my friends and family have asked me that question, i don't thinkk i want to know.

I'm sure you will be fine on the hair issue, as for the tiredness yes i get so tired some days i can't do anything so been to the doctors and they said it's fatigue due to the tumour.

The emotion side of things is bonkers i can't believe how mine keep switching and i have no control over it, i can't believe the riving ban like you say it's stupid how things we take for granted are taken away, & yes i love to go out for random days to get that feeling of being alive, how old are you & where are you from i you don't mind me asking?

So sorry to hear it got you so young, I'm 38 and from Birmingham, there are days when I'm happy and upbeat and am able to get on with life but then there are the days I'm upset and the realism of being ill sets in and I know my life has been cut short, but I notice the tiredness sets in more everyday and my brave face is harder to keep, I'm working on this though as I've always gone by the saying that there is always someone worse off than yourself..

Indeed i feel like i have had my life stolen away, i try to balance that by the thoughts of all the good things i have done in my life but i still feel cheated, i do think of things that will make me feel better and that's a nice holiday in the sun, i have chosen Mexico as my destination and will travel there as soon as possible, (would you like to tag along) i do feel pretty anxious and am getting that sorted at the doctors along with all the other things my lump is causing,the saying "you only live once" has never been so true and people like us have to live life as though every  day was our last, So what do you worry so much about and is there anything i could help to reduce this?

I feel like Iv had my life stolen too, I feel lost and trapped. I'm thinking about getting back on the antidepressant cos I feel my mood has got worse within the past week, I feel frustrated, angry, annoyed with all people, but mainly feel sad.  I'm actually scared ATM tho as I'm scared that antidepressants could effect my tumor and make it worse. What you think?

I always think you only live once but I don't seem to be attempting to do it, stupidly cos I can't drive cos if I could I'd be off and I'd be more confident. Nowadays Iv lost a lot of confidence with others cos I feel paranoid.

i worry lots and I feel that these days and after the 3rd operation and confirmation meeting I feel the highest worry. It's the stupid things really but it's the things I think of and I think a lot, paranoia is massively involved I feel.

do you feel as paranoid about things as an effect?

I'm on antidepressants at the moment, they have me taking metrazepine and i do worry about them affecting my tumour so your not on your own there, i have started usingpublic transport again and it's so hard after driving for so long, i think it puts added strain and stress on us when we already have enough to deal with, I think you should make the effort to get out and go and do things though as you don't want to get stuck in the habbit of giving into not doing things.

How have you been over this last few weeks, have you started you rediotherapy or know when your going to start it?