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Do you record your appointments?
I know my limitations. While I’m with my wife/patient, I think about how to spell Flowfirnox and Oxoliplatin and neuropathy and Whipple surgery. What do they mean and how do I explain them to my daughter and others. All while trying to think of questions to ask the doctor.
I decided from the beginning that I couldn’t do her justice by winging it. So I always invited someone from our support group who is smarter and has more medical knowledge than me to join us in person at each appointment or on the speaker phone if they couldn’t make it. To listen and ask questions.
I recorded every appointment, audio of video appointments, every interaction with the Oncology, surgery, radiology doctors. Second option appointments. All of them. Then, in the beginning, I sent it out to my family and support team. The support team got and still gets every recording. This all started October’22. I don’t ask permission. I just do it. My intention is not to sue. My intention is to do the best that I can for my wife. There is no flow chart on what to do. If this then that. Timing for next steps? When do you have surgery. When do you go to second line/gemabraxin. Did you know that many trials don’t take you if you’ve had two different treatments. I didn’t. The doc never told us. Chemo i$ the $tandard of care. Who’s covering costs of clinical trials, interviews, etc.
Having an audio record of your interactions might help you with your decision making.
Btw, PanCAN gives us Hope!
Good luck!
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@rstokunaga
We have a book where we write everything down at my wifes appointments. I've never even thought of recording them. Thats actually good advice.
I sometimes have to go back through her books to see what the previous oncologists recommendations were or the medications she's been on as we go through the process. (We've been through 5 oncologists since my wife's pancreatic cancer diagnosis in 2021).
You bring up the fact if you were on Chemo or other cancer fighting drugs, you are ineligible for clinical trials and that is true. I found that out after the fact as well. No one tells us these things and we go through the process relying on the experts in the field. I wish you luck and good outcomes for your wife and your family. My prayers are with you and all those suffering through a cancer diagnosis. Stay strong!
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2 ReactionsMy local oncologist office forbids video or audio recordings. Clinical trials in different stages have different criteria- yes, some demand no treatment and others want stage IV so there is a range.
My wife attends all my appointments, just so there's a second set of ears, and sometimes we hear something entirely different. It's really hard in those circumstances to retain everything from that precious time slot you get with your oncologist. I can see why some of them would object (all legal risk), but imagine some are OK with it.
I had an appointment last week where the NP asked me if it was OK for her to record the meeting, since her institution is experimenting with an AI generating post-visit notes. I said that was fine, as long as I get to grade the final product. 🙂
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4 ReactionsFWIW, I was just signing some documents online for another possible clinical trial institution, and one of their requirements was my accepting that they do not permit any photography or video/audio recording on their main campus unless specifically authorized.
It is impossible to remember it all. Initially, I limited myself to 5 questions. But, I also always let the doctors speak first. I found that the doctors frequently answered my questions before I asked them. I also didn't want to disrupt the doctor while presenting what he/she felt was important. Ever sit in a class where a fellow student never let the teacher finish a statement? I personally don't learn like that. Ever try to teach a class with students like that? It is quite difficult to teach the subject matter. Now we all learn differently. Do what works for you. But if I listened to a recording of a doctor's visit, my head might explode. It already comes close just reading the doctor's post visit notes.
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2 ReactionsSo very true -well stated ,sounds just like myself .