Home Forums Support and Opinion Forums Open Discussion Forum What makes you cringe? What do you think is most misunderstood? Reply To: What makes you cringe? What do you think is most misunderstood?

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Mary B

Me too, with friends dropping out. but have found others who stepped in and are being helpful. I am 2 years and 3 mo. out from craniotomy with partial resection and have most of tumor still. I had one of my best friends tell me, a year out, that my BT was giving her too much stress and haven’t seen her since. Like I could help not being the same! Even many physicians don’t get it, esp. brain surgeons, many of whom are in deep denial of the effects of what they do, almost like it would be a personal reflection on them, if their patient wasn’t” doing well.” I had one write that in notes, after we had just discussed my seizures, headaches, diplopia, cognitive issues, ect. . I asked his nurse later, if he thinks his saying it makes it so? I have found the neuro-oncologist much more objective and the epileptologist pointed out all the damage, scar tissue from surgery and mass effect from BT on temporal lobe as causing my partial seizures and was first one to really listen, understand and validate my symptoms, concerns, ect.. She is a keeper!