@Karenp23 Welcome aboard & hang on for the ride of your life!! We are all here for you & there are many here who have endured what you have so come to us for any advice. Good that your recent doctors visit has helped answer a few questions & keep writing those questions down for future visits.
I found so much help with a McGrath nurse. I live in a small country town so i jumped on the website, clicked "Find a Nurse" & found one closest to me which was still over an hour away. I emailed her & sent her my path results so she knew what i was dealing with. I have only met her once but we ring/email each other & i ask her all the silly questions. They are trained to counsel you & any family members too as well as advise on treatment/surgery options. i would have been lost without her knowledge & support.
Keep ticking off the boxes & try not to think too far ahead as the goal posts change all the time so you may find yourself worrying over something that may not happen. Be kind to yourself & stay strong & positive as hard as it is some days. love & hugs xx