I've had to lump these together because I have been recovering from the port precdure, and chemo, and had to fix my computer, because somehow it was getting slower and slower.   The days after the procedure I was pretty tired, I think partly due to recovery from the prodedure, and the chemo still working its magic on me.  They radiologist had me on a restricted activity schedule, so that I wouldn't rupture the groin area.  By Saturday, I was feeling better and able to walk around a bit and my wife of course wanted me to put up Christmas lights.  I actually only got some done, and had to finish on Sunday, the weather was just to cold up here, and I was feeling tired.  Bowel function has been better since Friday on, not diarreah, but my back has been killing me due to that flat bed they had me lying on.

 

I notice that bowel movements come on suddenly now, and can be quite painful if I have to hold it for even a second or two.  I think all the fiber stuff I eat is making me go more, I'll have to make sure I know where the bathroom is when I go anyplace. 

 

I do take more naps, tiredness comes on suddenly, and I find myself just laying down to take a nap, next thing I know its 3 hrs or more later, guess my body needed the rest.

 

Day 13, Nov 28, Mon - Had my blood drawn today, the nurse got a blood return right away, and actually had to have me apply pressure to my chest for about 15 min, because I was bleeding pretty good.  So it seems now the chest port is working.  Lets hope it works tomorrow, or my chemo.  Nurse thought that I should start taking the Coumadin again, especially since the procedure is through. 

 

I have had much experience, dealing with automating business systems and processes, and it always amazed me that 9 times out of 10, poor communication was the problem, not necessarily the business system. 

When I worked on payloads, we were always trying to get a clearer signal by eliminating the noise.  If I  apply that to this situation, the "signal"  in my case is between the doctor and patient, the "noise" is coming from the nurses and their opinions and the other personnel, such as the radiologist, who should be talking with my oncologist, rather than acting on his own.  To get a better "signal" you have to eliminate the "noise".  I will not listen to the nurses, or other doctors, unless they acknowledge that they have cleared this with my oncologist, since lately they are cleary the "noise".

 

Had an appt with my oncologist today, and I asked her of she could help me understand how the dye study of my port somehow turned into a port replacement/port clearing procedure.  She says that she asked for only a study of what was causing my port problem, nothing more.  She spoke with the radiology dept and made that clear.  She was not even aware that they had performed this procedure on me.  She says she has had problems with the radiology dept before.  She says she cannnot do everything around that place, and so she has to delegate, but finds this institution has many problems.  She says at Mayo Clinic where she did her fellowship these things do not happen, but here there are many things that are problematic.  We discuss what could be done if this should happen again, my opinion was that I am not able to make an informed decision when they have me laying on a table, telling me what they are going to do.  This place did it to me before on the day of my colon resection I was informed they were going to remove my gall baldder.  This is not giving the patient their right to make an informed decision.  I explain that if I ever find that what we discussed is not what they decide to perform, that I will get up and walk way.  She agrees.  Also if she thinks that we should make sure that the any other doctor that is performing any procedure ordered by her, has conferred with her, otherwise leave.  I also explain that if the nurses infer any treatment, I will not listen to them, unless they say they have spoken with her. 

 

In the long run, I don't think there is anything malicious going on, except that I notice the oncology nurses seem to put there schedule ahead of my treatment.  They are a small infusion ward, with only 4 chairs, and so consequently they get irritated with me when my port does not work.  Of course this is not something I have control over.  Also in a business sense, I am a paying customer, I do not expect to pay someone who should be providing me a service to tell me their problems.  When someone is paying me do provide a solution for them, I do not go around telling them how I am under staffed, under paid, and over worked, their not paying me to hear my problems, their paying me to solve their problems.  I can sympathize with their predicament, but it is still their problem not mine.  Healthcare is really becoming scary.

 

In the long run, I am not here to fix healthcare, I am here to receive the best possible care I can get.  I do not want to expend anymore energy than I have to, as it takes away from my healing.  And as long as it is working in towards my recovery, I'll be grateful for this.  I post this because this is my log of events, so I can remember, and also so that others may benefit.