Update and rant

To begin with everything is the same as it has been.  I have some pain in my hips and the joints in my right hand.  I think these are all good signs, but who the heck knows.  I'm having some trouble sleeping and I'm not sure if it's the stress of the situation or the treatments.  Either way, I'm glad I can nap during the day occasionally.

So here's the rant and the most likely reason I'm not sleeping.  Every time I had an appointment with my Danbury doctor, I waited at least one hour to see him.  This also made me very late for my chemo appointment.  So, an appointment that should have been one and a half hours turned into almost 4 hours.  Phew!  It's freakin stressful enough being in the "c" word center without unnecessary waiting, but the disregard for the patients' time is astounding.  In the beginning, I had to see my doctor every week unless I went to Boston and there was always an hour wait.  I understand that one of the awesome things about my doctor is that he spends time with his patients, but then they should spread out his appointments more so we aren't waiting forever and getting aggravated.  My blood pressure is up every time. Finally at one appointment with the nurse practitioner, I said something and an administrator came in to speak to me.  I told her my feelings about the waiting and I also told her how most of the TVs in the infusion area don't work.  The TVs don't affect me anymore because I'm not sitting there with an IV now that I'm getting shots, but what about those people sitting there all day getting chemo???  Even if their eyes are closed and they are resting, those TVs are important.  Most people don't want to be sitting there in silence thinking about the hell they are experiencing and fearing for the lives.  The diversion is about human decency and how to help these people through a very scary situation.  I was actually told that no other patients had complained, which I know for a fact was a lie. I was also told that the TVs were being checked, but I have my doubts that that ever occurred. The people who do try to help and make you feel comfortable are the nurses. Thank goodness for them.

Anyway, the admin. said maybe things would be better if I saw my doc first thing in the morning and then on my off chemo weeks, I could see the nurse practitioner.  That sounded like it could work and I had also requested my chemo early, because it was always in the middle of the day for 5 days and it was hard to do anything else that week.  Well, she completely f'ed up my schedule so badly that I haven't seen my doctor in 2 months.  She kept telling me that she was sending me a schedule, but that never happened!!  So, on 2/14 I had to go in for a blood count check, an appointment I called and requested, and asked for my schedule.  That was when I found out that my chemo beginning on Tuesday didn't begin with a doctor appointment.  You always have to see a doctor prior to chemo.  Now I'm PISSED!!!   I asked my nurse to please have a scheduler call me because they weren't at work yet when I was there.  I never got a call.  I called there on Thursday and explained my situation and they were able to get me in to see the nurse practitioner, but not the doctor. Well, not see the doctor until Friday and that didn't really help me any so I requested a phone call from him.  I needed and still need to find out exactly what is going on!!!  He NEVER returned my call.  On top of all this, I e-mailed my Boston doctor on Wednesday, because I was having an issue with my eye and I'm waiting for the results of my chimerism test.  NOTHING!!  F'EN crickets!!!!  I'm feeling very insecure with the care of my health and to be honest...I'm scared.  I don't know if my Danbury doctor knows anything about what is going on with me and and I don't know if the 2 doctors are even communicating.  The only time I ever get any information is when I go to Boston and that is once a month.  My Boston doc was the one who told me I only had to have my blood count done every other week.  I'm frustrated and i actually called Lee at work in tears on Friday.  Things weren't like this 11 years ago when I first got sick and this health care sucks.  Hospitals have become a business that has forgotten about the patients and administrators try to bullshit you in to believing their crap.  I had even called a patient advocate in Danbury and left a voicemail. Guess what???  No return call!!  All this stress isn't healthy for anyone and I hoping my rant helps alleviate some of my anger.  I don't know where else to turn.