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Im am a big worrier, talking would be great :)

Kayleigh15
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was diagnosed with a grade 2 brain tumor early in 2015. During 2015, I had 2 different brain operations, the first in February and the in June. Recently, after having constant MRI scans since my last operation, I have been told the tumor has gotten worse. Now it is grade 3. Recently I have had a third operation, and told that radiotherapy is strongly advised. I am shocked, but mainly terrified of the outcomes during and after radiotherapy. I feel my self-esteem and confidence will fall dramatically. the situation is forever on my mind. I feel that if I could talk with someone, in a similar or in the same position, I would be forever greatful.

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    Hi Kayleigh

    welcome to the forum albeit under such circumstance.  Sorry to hear what you have and are currently still going through and wish there were words of comfort I could give.  I don't know anything about your cancer or radiotherapy, but by responding here I am bumping your message up to the top of the queue in the hopes that a member who can relate will come chat to you, or even one of our lovely mods or nurses.

    Best wishes

    JB

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    Hello Kayleigh15,

    Welcome to Cancer Chat. I am sorry to hear your tumour is now grade 3 and I hope you will get to talk to others here who are or have been in a similar position.

    It is normal to be worried about starting radiotherapy and I thought I would share with you our information on radiotherapy for brain tumours which you can read here . I hope it will answer some of the questions you may have. If you live in the UK, don't hesitate to give our nurses a call on this free number 0808 800 4040, Monday to Friday 9am to 5pm

    It can also help to talk to others who are currently going through a similar experience and perhaps you would like to drop a line to [@carl78]‍  here who posted only a few days ago and recently had brain surgery.

    Best wishes,

    Lucie, Cancer Chat Moderator

     

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    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.

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    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.

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    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?

  • Offline in reply to carl78
    Since the seizures started Iv always thought it was a panic attack, I wouldn't agree with anyone else that called them seizures. I think I'm coming to terms with it now though. Before I was diagnosed, I'd never met anyone before that suffered with a brain tumor, it's as though it didn't exist I guess, now I dunno if I'm paranoid or what but I feel I hear lot of people talking about their family members or friends, my cousin and her husband have both also been told they have a tumor but mild. I can't stop thinking about that. I worry like mad, these days I'm worrying about wanting/needed to know what exactly is going to happen, the time table, exact treatment, etc. Makes me feel lots better if I know, I'm sure you would feel better if you know what happens next for you too? The little thing what you've just said about hair, I'd feel lots better if that was the case, it's all that's on my mind, the therapy starts soon. Do you feel tired already? I do. Before all this started I used to be not emotional at all, now I have tears at least 4/5 days out of week. Which is terrible. As far as Iv noticed the only effects Iv had are tiredness, seizures, memory, and a total mood change which is a lot down. My tumor is on the left hand side near the temple and ear. The thing that upsets me a lot is the ban from driving, I realise now that before all this I only used the car when needed and took it for granted but now, I realise I was stupid, I would go everywhere anywhere for good days and excitement. I realise a lot now. Do you have any thoughts like this?
  • Offline in reply to Kayleigh15

    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?

  • Offline in reply to carl78
    I keep getting good info about how the hair might be, still not feeling happy tho, that's the thing I worry and cry like hell with it, I'm very unconfident and self esteem is very low. I get very tired too, I feel like Iv been like that for a long while, I always try to fight it tho. Being tired is hard tho isn't it. It sound like we both often think the same things and have the similar feelings. The situation is very hard and upsetting tho isn't it? It's hard. I'm 28 and I'm from Barnsley which is in South Yorkshire. How about you, how old are you and where you from?
  • Offline in reply to Kayleigh15

    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..

  • Offline in reply to carl78
    Your pretty much you too!! :) I pretty much feel the same feelings as you, mostly though I feel frustrated, angry, irritated and anxious (I worry like mad) I assume all these because of the situation effects so I get told. I wish the moods could just stay happy all the time don't you? The thought of our life's will cut short really upsets me. Iv felt really down and depressed at times thinking about my life and that it won't be as long as I thought cos of the health situation, weather this is the truth tho I don't know. From the moment this all started 20 month ago, my mood has changed I feel, the thoughts of that you only live once. These days I want to do lots of fun days like for example the seaside as it makes me very happy. Is there anything that you could do to make you feel a little better?

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