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  • !!**venting**!!

    Surveillance it is…
    This should be great huh? Why is it so hard?
    Larry’s back hurt last night, enough that he couldn’t fall right off to sleep. He said it was his tailbone, not by his pelvis bone like before. Then he said “it’s been a while since it hurt like this”, his next step was to explain that it must’ve been the trip to IU that caused it because it’s been hurting since then (two weeks). Upon inquiring about his back today, I was met with a casual “it’s fine now”. He clearly doesn’t want me to worry, but I heard the concern in his voice last night. I am personally going crazy. We’ve been back two weeks, we haven’t heard from our Dr. He is supposed to be on surveillance, yet NO ONE is watching him. I have no idea when the next scan will be, where it will be, who will be going over the results with us. I feel like I could at any moment be like Shirley MacLaine on the movie “Terms of Endearment” when she is asking for medication for her daughter. I’ve called our Dr. today but of course it isn’t as important to the nurse as it is to me.
    I just don’t get it; I mean surveillance means (n.) Oversight; watch; inspection; supervision. WHY ISN’T ANYONE WATCHING! What if those “spots” are changing???
    How funny, I was typing this when the Dr. office called me back, the Dr AND his nurse are out of the office until the 20th!! There are no notations when his next scan should be, so the assistant that called me back didn’t have any answers for me and I should call back on the 21ST if they don’t call me on the 20th.
    I’ve got to contact the IU to see if they even got back to our Dr here and find out exactly what surveillance they recommended. I’m normally a laid back person, but I can’t just “wait” until someone decides to call me back..I HAVE to know….

  • #2
    I am on surveillance myself for all of 60 days after I/O. I really don't worry/think about it at all or every little ache and pain: I mean if I were to constantly work myself up over it, I'd really be a cancer "victim". I do like to keep on top of things though, directing my own treatment. I have a great team of doctors involved and if for whatever reason you are unhappy with your's: change it!

    Plus, as harsh as this may sound, but we all are going to die eventually. So why worry...