2023/02/26: Sharing information

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One of the important things that I found that I had to learn was how to share information about what my body was experiencing or had experienced.

Some of it was during treatment. It was important to take notes for symptoms. I learned how to share that information, and in turn, get feedback on what it is called, or what terms might help the person listening understand. It had to happen quickly and efficiently, so we could move on to what the appointment was about. An example of a tool used to help me learn was the Bristol Stool chart.

Post treatment, it was important to be able to be clear that I had received x external radiation, x chemo , and x internal, and confirm they understood what brachytherapy was. (A GP is likely too, but, a pelvic physiotherapist may not.) I also had to be able to explain to those for whom knowing would help, how my vagina was structurally changed.

Throughout, I had to discern what was important to note, what wasn't. How to listen to their asks, and ensure that I could give appropriate responses.

Some things, I just had to learn how to transmit the information quickly so the person didn't get bogged down in their own feelings or feeling they had to express their sympathy. Example: Often what comes up during times with pelvic medical items is your birth history. It can be confusing if they ask their typical questions, as I had a live birth via c-section, two live births via vaginal birth of very small infants (who died), a late-term miscarriage, a live birth via c-section. If I don't take control of the information share, it can lead to confusion, odd questions, etc. By being clear up front, we get through it quick, and move on.

So, if you are reading this area, and are experiencing...write down some of your information: past surgeries, medications, etc, but, also be prepared by being informed of terminology and capturing your own situation.
 
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Helpful post @JayneWonders. I think its also helpful to have info written down in case there is a time when you are not able to relay this yourself & a spouse or kid needs to answer questions. I am rather doubtful that mine would be able to be accurate, or be good advocates for me in such a situation, hence it's been on my mind lately.
 
My mom and dad were always very private with their medical information.

Healthcare practitioners often seemed quite surprised when I was unable to provide a detailed history for them.
 
We keep pretty good records but with Mom's immediate family all dying young of heart disease, Lord knows what history I am missing since they didn't live long enough to run into things like cancer and dementia. And even with Dad, there's gaps. No one seems to be sure if he ever had prostate issues or not, which would be useful to know now that one of my brothers has prostate cancer.
 
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