Brain stem tumor

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Hi my son has just been diagnosed with a brain stem tumor. However due to where it is he could not have a biopsy so we don't know at what stage.

He is very emotional crying a lot he finds it hard to control this. I am feeling so numb and helpless. He is also struggling with his eye sight and weakness on the left hand side. 

I just don't know how to cope what to say frightening I might say the wrong thing. 

  • Hello  I have just come across your post and am so sorry to read about your son's cancer - I can fully understand your worries at this time and I am aware it's important not to say the wrong things. I am not a member of the Brain cancer forum (I have another cancer) but by me replying your post will be "bumped up" to the top of the forum and be seen by more Community members. that way i hope to get you some advice from people with a similar cancer.

    I may be able to be able to find you some help for your son, may I ask his age please. I would also remind you that our help line on 0808 808 00 00 is open 8am - 8pm (7 days a week)  and there are some cracking people on there who can give you the support you need.

    If i can do anything else for you please don't hesitate to get back to me.

    Best wishes - Brian

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hello  My partner was diagnosed with a brain stem tumour in January and hearing the words terminal was awful he’s 21 all he wishes was a surgery could be done but they can’t because it’s in his brain stem. He has found it so hard to deal with and wished he could talk to someone who had this as well. He lost all control on his left side of his body couldn’t walk or nothing. His eye sight also went but found it he wore an eye patch and covered either eye it helped a lot. He’s finished radiotherapy 1 week ago and is struggling to come to terms that he may never feel the same again as he has intense pressure in his head and says he feels like he isn’t walking in his own body. We are hoping his radio therapy has worked and once the inflammation from it goes he will be able to enjoy what he done before. 

  • Hello  

    Thank you very much for your post. I am so sorry to read of your partners cancer and the problems it's causing.I have a different cancer myself so can't give any specific answers to any questions you may have. 

    For any additional support you need please give our helpline a call on 0808 808 00 00 (8am to 8pm 7 days a week). There are some great people there who have access to plenty of resources and I am sure you will find a call to be beneficial.

    If I can do anything else for you please let me know.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • CourtneyW - that is such a hard thing to go through, for him and for you. Heart

    How is he feeling after the radiotherapy? Hopefully his appetite is ok, and he isn’t nauseous? That is not a fun time..

    His description of not feeling like he’s ‘walking in his own body’ is so well put - I’m so glad he’s able to talk to you about how he’s feeling, I’m sure this will help both of you. 

    I have a stage 4 tumour in my left temporal lobe so it’s different but I’m always happy to talk,

    sending you both love, LeeLuu x