Wow !
Congratulations Chelee, on growing "extra parts in your briefs"...lol. They can be a nuisance when sitting on hard chairs, but they really come in handy when you find you are getting the "50 cent tour" of your cancer treatment plan. You now have the spirit, the information, and a plan in place to take control of your treatment. It may feel odd to be in charge for the first time, but you will grow comfortable with your new found confidence. We are all proud of you.
Having the moniker "Troublemaker" won't win you any popularity contests, but it will help you get the best possible outcome. Nothing makes a male doctor pay attention, like a woman that shows up with her panties in a knot...lol. It's a shame that it has to be that way, but too bad. Again, they have too many patieints and too little time to make life-defining decisions. In a sort of slow-motion kind of way, they are acting as an ER trauma physician when they see you in their office. What they decide or recommend can affect your life in the same way, only over a longer period of time. Keep up the good work, and read your books and pamphlets.
Remember that you don't have to be rude and obnoxious to make your point. Just be firm and accurate in all you say. Words mean things, and speaking properly from a position of knowledge will have a positive impact. Imagine how I felt when a secondary onc asked me what Tykerb was when I explained that I wanted Mom to have it if I could make it available to her. Another physician in radiation oncology some toime ago, had not heard about the Bayer HER2/neu Serum Assay blood test, and asked how it could possibly work. When I immediately responded that it measured the level of circulating oncoprotein itself, he was clearly embarrassed in front of his intern, especially when the intern frantically jotted down what I had just said. If I had my way to influence cancer treatment, it would be to insure that busy, overloaded physicians have someone whose sole purpose was to keep them informed, day by day if necessary, on the latest research information.
One thing that I did shamelessly for one physician, was to make them a small decorative furniture piece (essentially a knick-knack) for their home. It was something that I knew would be displayed prominently, and seen every day in their normal course of life. I did that for two reasons. One was that I wanted to show my appreciation in some small way (a hundred dollar bill didn't seem appropriate) for their special interest in Mom's case. The other was that I knew that each time they looked at it in their home, they would have to (even if only subliminally) think of where it came from and why. There is no way to measure such an effect, but every little bit helps. Who knows? They might be thinking, "oh that pain in the ass" when they see it, but who cares why as long as they remember Mom as well. You get the point. I will not hesitate to do whatever it takes to see that Mom gets the best treatment she can. Firearms displayed prominently in my belt are reserved for particularly desperate situations...lol. Take care and keep us informed.
Best Wishes,
Tom
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