Friday, March 26, 2010

Radiation Day 5

I arrived at the hospital a few minutes early and met with the rad. onc. to ask flat out, WHAT'S GOING ON? Why has my treatment plan been in question every day? Why did he and the physicist come in 3 times to check things? Why did I need films 3 times in 5 days?

It turns out, he was modifying/tightening the radiation field so that the radiation is even further away from my heart, to protect my heart even more! That was great news! The rad. onc. that did my simulation/designed my treatment plan a week ago was the woman that was subbing for him while he was on vacation, and when he got back, he couldn't just accept her plan without checking it himself. And in the process of checking it, he determined that it was possible to modify the field in this better, heart-protecting way. I was really relieved to hear that, and he showed me the before and after photos (i.e. her plan vs. his plan), and I'm satisfied with the answers now.

BUT, I'm annoyed that he couldn't have just explained all this to me days ago! When I was standing up to leave his office today, I said, "Thank you for explaining it all. I had really been worried." He replied, "I know, I could tell by the look on your face the other day that you were worried and I knew you'd have questions." GEE, THANKS! You took a mental note of the fact that I was worried, but made no effort to do anything about that?? What I learned from this meeting with him today is that, for starters, I can't just assume that doctors are going to take the initiative to tell me the information I need, even if to me it seems like common sense for them to do so. I need to keep speaking up and asking all of my questions. I also realized that I had been misinterpreting his motives - I was paranoid and had thought that he and the techs were purposefully keeping information from me, by talking "in code" amongst themselves and being really vague so that hopefully I wouldn't notice that they were having problems and they wouldn't have to tell me about the problems. Now, I understand that they weren't trying to trick me. He was more than happy to explain everything to me once I asked my questions...I suspect the disconnect is simply due to him being more interested in/oriented towards his machines than his patients. He just does not have good people skills. And that stinks, but at least now I "understand" him better and know what to do in the future: JUST KEEP ASKING QUESTIONS, whenever I need to.

Today's actual radiation appointment took just 20 minutes from start to finish, which was a nice surprise and a relief. It's SUPPOSED to be that short every day, but this was the first time it had been shorter than 45 minutes! So I HOPE HOPE HOPE that subsequent appointments will be this short & sweet and I'll settle into a routine, and it will be relatively smooth sailing for the remaining 28 treatments. Because OMG, my anxiety before this appointment... I swear I was already mentally composing the "I quit radiation! I want a mastectomy!" email to my surgeon!!

2 comments:

  1. You're totally right about being proactive with your questions. I've taken many people to radiation and other types of medical procedures, and from my experience techs and docs rarely if ever try to keep information from pts (always depends on the individuals themselves, of course.) What I see happen a lot is health professionals talking over pts because, honestly, most pts don't want to know. I've seen docs try to explain things, even I have tried to explain things to pts and it falls on deaf ears. One example in my day-to-day is blood pressure - I'll check a pts blood pressure and if they ask me about it at all, it's usually "Is it good?" as opposed to "What is it?" Sometimes we forget that there ARE pts out there who really care and want to know every detail of their treatments! Don't ever be afraid to remind your team that you want to know it all.

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  2. thanks, sarah...that's all good stuff to keep in mind!! it's weird to me that so many patients don't want info! i'm in the middle of reading like my 6th book on breast cancer...ha

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