My apologies to the good ones

I know on various occasions I have gone on venemous tirades against those in the medical profession. I am sorry. It has come from a place of pain and frustration.  I know there are plenty of beautiful, compassionate, empathic doctors and nurses out there.  Many of them are my good friends.

My OB is amazing.  Andrew's oncologist is wonderful. Andrew's neurosurgeon was wonderful.  Many of the nurses on the floor are sweet and empathic.  I am hoping that soon I will be able to say the same for my regular oncology nurse.


So why am I complaining?  I suppose it is the overall experience.  It feels calloused and doctor -focused.
 
When I enter the hospital doors, my body begins to shake.  Despite the many good doctors, my experience so far, has not been especially positive.  I know we are receiving the treatment Andrew needs in order for him to have any chance of life.  I just wish there were a more humane way to receive it. It is so damn painful.

I suppose there are no better solutions, but hospital living is horrendous.

As soon as we discovered Andrew's tumor, we were shuttled off to a room, with a moaning roommate, whose blinking lights and noisy alarms went off all night.  I am sure they appreciated our intrusion as much as we appreciated their company.  It was a Saturday, so there were few doctors around, just interns and residents with lots of repetitive questions, and few answers. We had to wait until Monday to meet with anyone about surgery.  It was a long wait.  Lots of testing, and Andrew was prohibited from eating.  Parents have to use the bathroom down the hall.  It was horrendously hard.

Our neurosurgeon, once we met him, was beautiful.  He sent us home for one day of play before coming back in for Andrew's surgery.  He did a great job removing Andrew's tumor and Andrew recovered quickly.  I am thankful for him.

Unfortunately, we were then shuttled off to another shared hospital room.  Where once again, we were with a roommate, this time, someone who stayed up until 11:30 every night.  Blood draws were every morning at 4 am, and Andrew woke up screaming every time.  Sometimes he did not go back to sleep.  Once again I was forbidden from using the bathroom in the room. 

At one point, right before the diagnosis had been given to us, the transportation showed up to take Andrew to tests on his heart and kidneys, with no explanation, and no diagnosis.  Apparently everyone knew his diagnosis, but us.  The doctor showed up later and apologized, and then gave us his diagnosis.  He was a very sweet man, but his English was so choppy,  it was hard to understand him, and hard to understand all that he had to say about Andrew's diagnosis.  It would have been hard enough to hear in a sweetened-up English voice.

Then our assigned doctor showed up (we have since switched).  She did not greet us, or smile during the entire time.  She was as gloomy a person as I have ever met and proceeded to give us all the worse case scenarios.  She was followed up by her nurse, who seemed to relish the power she had in the situation, and described in a very cold manner the side effects of chemo, and all that would be done to him in the next year.  When they left the room, there was the most depressing solemnness I have ever experienced.  My parents were there, my husband's dad was there, and I was there, unfortunately.  I am glad that the information was over Andrew's head, because he was there as well.

And then there is the clinic office.  My nurse is just not an empathic person.  It has been hard.  I would never share any concern or feelings with her, because I don't trust her care or concern for Andrew.  I am just in shock as well that they would take these children who are already tortured every day by chemo, and needles, and medicines,  and then stick toothpicks up their nose every time it runs.  It just boggles my mind.  I start to feel like they have forgotten that these children are just as human as their own kids at home. 

And then when I go to the ER we are bombarded, each time, with interns, and residents, and nurses.  We usually get there late at night, and are visited every fifteen minutes by someone new.  I actually had someone ask me his diagnosis at 3 in the morning.  There are so many things about all of this that just feel so inhumane.  It seems like things could be done differently, with the patient and his family in mind.  It makes me rageful.

I feel like I am expected to have a supernatural threshold for emotional pain, and God- like grace, and unending tolerance.  But I don't.  I am wearing thin from all of it.  It seems so calloused and routine for them.  It is traumatic and heart-wrenching for me.  It is traumatic and painful for Andrew.  We got a horrible diagnosis, and then got thrown in prison.  That is what it feels like.

So my anger is very real, and constant.  I am trying to figure out how to channel it, but where should it go?  A lot of it goes here. 

So I apologize to those who read and may take it personally.  I appreciate all of the love, and care, and compassion you put into your job. It is very needed out there in the medical profession.  Thank you for all that you do.