Well its been a few days since 'my news' and I have had time to digest and think. Firstly, I realize that I have forgotten the rules of consultations. The most important being, write down what is said especially if there are names or anatomy or individuals mentioned. My daughter was there and she has corrected me on some of what I had thought I heard. But again, you would assume after this many years I would at last have a pen and paper. Actually, in the first couple of years I not only had a pen and paper but also and entire binder divided into sections that contained all the test results, nurses notes etc. I am sure that some people in the waiting room may have mistaken me for a drug rep I looked so official.
I have mellowed since then obviously as now I don't even carry the basics.
So, anyone beginning this journey, and my heart goes out to you, the best advice I can give is to have:
1. Another person with you for a second set of ears. Ears is the operative word here. My rules stated that the individual is not allowed to speak before receiving my permission. I must admit that not all of my friends or family have followed this rule but those who never got asked back now know why!!!! Not that your questions or queries weren't appreciated its just that 'driving the bus' part.
2. At least a pen and paper, preferably a note book so that you can keep all your notes together from each meeting. I would jot down questions before I went in to ask in order that I didn't get too overwhelmed and forget. There is nothing worse than getting home and realizing that you forgot to get a prescription for your bowels etc. Also, I find when you take notes often the doctors speaking slower!
So that is my advice....which I haven't been following lately but will definitely do so at my next appointment. This one with the orthopedic surgeon. I know nothing of the anatomy of the hip, except that little ditty : the hip bones connected to the leg bone....which in this case has not been very helpful. I did try and go on the Internet to see if I could make sense out of the news, but I can't really remember the names of the bones he mentioned. I have a vague idea of where and what but it would have been helpful to have the parts of the bones written down. I thought the hip bone was a bone.....it seems that it is not really the actual name for the bone in your hip. It is made up of three bones, that are separate when you are born and then fuse together as you grow. So from what I can make our it is the iliac spine part of the hip bone that is affected I think! Anyways not important for now will know more soon.
So, as you can see I have been busy trying to become an orthopedic specialist as my control issues are in high gear. I don't know what I think this will change in the grand scheme of things but at least for the hour or so that I am absorbed in the information I feel in control. When first diagnosed with OVCA I tried to become an oncologist too. I have learnt a lot in the past 13 years, more than I ever learnt in school taking science, biology or chemistry in school. I guess when you life is on the line you find the information my more important and pertinent. I don't think the knowledge has helped in any way with my recoveries or my journey, but it sure has kept me busy when I have felt a little crazy. It also has given many people in my life a break from my frenzy ramblings. So, no matter what it has served some purpose in my life .......well am off to the Internet yet again!