@twocents I can only imagine how overwhelmed you must be. So many different people telling you so many different things and most of them “speaking a foreign language.” By that, I mean so many different words and procedures. My big suggestion to you (from my own experience), is to get a good size notebook and start religiously using it. When I got sick 3 years ago, my husband started a notebook and wrote Everything that anyone said or did. It was several months before I could really comprehend what was going on but he had carefully written it all down. I now keep my own notebook with sections for my PCP, the neurologist, the oncologist, physical therapy, etc. I hope this will help. As a former oncology nurse, we asked all of our patient’s caregivers to do this and it made such a difference to them.
Will you stay connected and let us know how everything goes?