The problem with having a rare cancer is that every unusual symptom is cause for a trip to a specialist, who pokes and prods you as if you were some strange alien they just brought in from Area 51 for scrutiny. It gets sort of annoying after a while.
Actually I feel a bit like that even with my non-rare but statically unusual breast cancer. And if I hear one more time "oh that's quite a rare symptom/side effect" I think I might literally pop a vein. But that's Planet Cancer for you isnt it. Annoying indeed!
ReplyDeleteI know the feeling. Even though my cancer is not rare, I dread all the tests, one next week! I know its for our benefit but sometimes we get tired of getting "felt up"! lol...Buy me a drink first at least. just kidding. Well, hang in there. This too shall pass....xo
ReplyDeleteI am a carcinoid syndrome patient, whose doctors have not found the tumors yet. I have the classic episodes of symptoms and have been recently having a more consistant pattern with them, such that.. they now are sending me to Dr. Viniks office in Norfolk, Va....and starting to look for the proverbial "needle in a haystack". I can foresee a very poked and prodded self coming up here soon. July starts my first GI procedures with a cardiac work-up first to prepare me for conscious sedation. I am really thankful for your blog and the personal stories. I'm a nurse and the research articles and medical info is buzzing in my head all the time. I am so overwhelmed by the frustration of not getting a diagnosis for so long and still not seeing the tumors that it drives me up the wall. I'd love any suggestions for other personal blogs of people with carcinoids/carcinoid syndrome. I need to see "life" in the midst of cancer right now.
ReplyDeleteAnna - I know! It drives me crazy.
ReplyDeleteAmy - If you look at my blog list, the blogs: "Viva la Vida" and "the blackbirds are rough today" are both by carcinoid cancer survivors...also, if you go to CCF website they have survivor stories: http://www.caringforcarcinoid.org/survivor-stories Hang in there!! The good news is the carcinoid community may be small - but it's a pretty tightly woven group of support.