Do you record your appointments?

Posted by rstokunaga @rstokunaga, 1 day ago

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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My 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.

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