"I'm losing faith in the medical system fast. The nurse came in to schedule my surgery and said it happens like no big deal."
"I was upset mostly because I wasn't told this could happen.
Communication could be better."
"Then asked me.... do you have a problem with this ? Of course I have a problem with this, who wouldn't !"
"You have to be your own advocate."
*******
The quotes above resonate(d) with me. I have lost so much faith in the medical system. I grew up at a time when doctors made house calls. I believed that doctors had a "higher calling" than just collecting $ for office visits. I thought that they cared whether you lived or died, and they would not intentionally withhold information from you that you needed to know in order to be prepared for the worst, if, God forbid, it happened. I didn't expect that an oncologist would employ a bevy of P.A.'s ("the minions," I all them) whose entire job seemed to be keeping you from ever having a face-to-face discussion with The Man and giving you the message, over and over and over, for 17 months, that "the patient portal is not the appropriate forum for this question. You should wait until you have a face-to-face meeting with the ocologist," which, of course, they were probably instructed to make sure it did not happen. I was only seen by my oncologist in Illinois 2 times in 8 months, and, during those brief visits, he never answered the questions I had nor told the truth. I asked about an oncotype and his curt response (Dec. 2021) was "You don't need one." That remark, alone, is debatable in light of the fact that, when I finally got one from my 3rd oncologist in 2023, it was 29. When I asked about the side effects of Anastrozole, his response (in writing, since he never saw me in person if he could avoid it) was, "The only side effect of taking Anastrozole is a little stiffness in your hands and fingers first thing in the morning, and it goes away when you quit taking it." (Wrong!) I also question not giving the patient a chance to recover from a seroma, less than a week out of surgery, before putting them on Anastrozole, and having them take it throughout the 33 radiation treatments. Even the 33 radiation treatments, in retrospect, are questionable, since the University of Iowa Hospitals and Clinics told me, 3 days before I was to start the radiation, that they would not have radiated me at all, because, he said, "You're a woman in your 70s." (basically an age that they seem to feel is 1 foot in the grave.) (Try to maintain you are only 69 at the oldest, because, after that, it is questionable whether or not you'll be viewed as a viable patient with some life left in you. The "be your own advocate" is the most telling, because I have had to be. Today's medical mantra seems to be YOYO: "You're On Your Own."