Today i visited the hearing doctor to see if the schwannomas on my 8th cranial nerve were effecting my hearing yet. Turns out I have perfect hearing at the moment! Yay! He gave me and my mum a lot of information about what's going on. But it seems like I'm the only one who hears the doctors correctly - my mum and dad act and talk like this is nothing. My friends don't seem to understand either. The disease I have hits 1 in every 40'000 people. I feel so alone.
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Super Contributor
Hi Laura, I'm sorry you're in this situation- it must be really difficult. This website might be a place where you can find others with this disease- or at least share feelings of isolation with others who feel similar. I'm in a completely different situation from you (my husband has lymphoma), but I've also felt isolated, and as if the people around me don't understand. It seems to be a fairly common theme when dealing with cancer- maybe we're not alone in feeling alone :~ I'm sending hugs to you- it's great that your hearing is fine at the moment! Long may it continue. love Emily
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Super Contributor
I think anyone who is diagnosed with cancer feels isolation at times ,despite support. After all it is you going through this .Noone can go through it for you . Remember your parents are there for you and they may seem as if they do not understand but they probably understand more than you realise . Friends may not seem to get what is happening but they may be trying to help you to feel normal .It could be their way of helping . Of course it is only you who knows how you feel and it is hard to communicate that to others when they want everything to be how it was . From what I read it looks as though everything will return to normal or close to it . You did not say what is going to be done .Is it a case of just monitoring or is a treatment in the planning ?
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Contributor
Hi Laura I did not know anything about schwannomas or ependymomas so I googled both. That is a lot to handle for anyone, let alone a young woman as yourself. To most people, particularly family and friends of patients, cancer is frightening. Your parents may be keeping calm and low key with you thinking this will help you cope. Openness with questions and discussion would be a good way to go, I believe. Ask them if they realise how serious this is, as you do. Tell them you need to talk about it, not tip-toe around the subject. Ask them to be strong for you because you need their support so much right now. Some people may be a wonderful help; some not at all. It is sad when your closest cannot help you, but doubly frustrating for you if you look for help from those who are unable. You are in a good place on this website for support. Another I have found helpful is: https://www.facebook.com/groups/45891977828/ (Survivors of Head and Neck Cancer) I am glad your hearing is still so very good and I hope it stays that way. I suffered noise deafness as a teen and all my life and now have bilateral cochlear implants. In good conditions I hear 100%. Sending warm hugs of strength and comfort, Pamela 🙂
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