Posted 2/17/2016 4:48 AM (GMT 0)
Been away a good while, was hoping for "new" news to report, but nothing. Very depressed, angry, and sad for lack of progress in any area, despite my constant efforts.
I still don't have test results from urologist from nearly 4 weeks ago. Was suppose to have follow up visit yesterday. I was 5 minutes from his office, when they called and cancelled appointment due to inclement weather. Was suppose to be snow/ice, but nothing happened..
So I went today, instead of seeing doctor, it was just for blood work. Demanded to see his nurse, she had an attitude, and told me that I would have to wait till next Monday, and that she wasn't allowed to tell me the previous test results. So I have to wait for nearly another week with no answers, while the problem is getting worse and worse.
Still no answer on the kidney bleeding issue. Suppose to see kidney specialist again in March. So I went to the VA today to get appointment with PCP, was told at least a 2-3 month wait, unless my next scheduled appointment was ok with me - which isn't until October. So I am on a waiting list.
Still have all this ooze dripping from my privates, smells like death. Urol suspected it was dying flesh from the radiation damage either in bladder neck or elsewhere. So why has it been 4 weeks with no answers?
about to give up entirely, I can't keep dealing with all this relentless pain on top of pain, and wasting so much time and money on doctors that get no where. By night, the pain in my groin and lower regions become intense (Pain level 7-8), pain spreads slowly down inner thighs, both side, down back of legs to my ankles. This has become a nightly event.
On top of all that, I am now having olfactory hallucinations 24/7. They use to be rare, random, short lived events. Now, anytime I get up, or move my head fast, etc. - I am swimming in an atmosphere of imaginary toxic fumes. Might sound funny, but it feels and smells as real as the air I breathe. So far, not one clue from any doctor - other than telling me how rare they are.
All this is one reason I no longer care what my PC is doing to me, or the fact that my PSA is back on a steady rising pattern. What difference does any of it make any more?
Sorry, need to vent. Been in a state of gloom every since I left the uro's office today. What I wouldn't give to be able to go to John Hopkins and have a real group of doctor's trying to work together with all these clues and come up with a game plan. But that is out of the question on several fronts for me.
Hope everyone else is holding their own. Sorry, I rarely even lurk here any more, nothing personal, got too much on my plate, and I hate only having bad news to report.