Tuesday, January 28, 2014

DCIS AFTER RADIATION . . . The moment of truth

The Cancer Center Patient Feedback form arrived late yesterday, and I've been obsessing about it.  

It's hard to say what I want to say in a way that could spark improvement.  I can't change someone else's personality.  All I can do is tell what I needed and got or didn't get.  And praise the people who made the month so much better.  And remember what is "small stuff."

I want to say:

I felt I had no choice but to be shut in a room with the social worker for endless questions.  It was not helpful.

I was so overwhelmed on the day I met the doctor.   One of the many pamphlets they gave me said that she would assess my medical condition, but I don't remember that.  Does she know that I have arthritis and tendinitis?

Reading the information on the paper I signed was not enough.   

After I said yes, I was swept into a room that I thought was the treatment room - many people and too much information. I found out the next day it was the Simulation room.  No one seemed aware that I didn't get all the information they were giving. I didn't realize how overwhelmed I was.  

One day, I was so worried about possible skin effects that I asked to see the doctor, and I met Dr. Kaiser.  He would make a good primary doctor - friendly, gave examples, and said if necessary I could use the medicine I already use for other skin problems.  

It was never comfortable having the nurse standing there when I was talking with a doctor.  It's like telling a problem to your boss in front of other workers.

The only really bad day was the first day of the boost.  I wasn't prepared for it, and wish I'd been warned to take pain medicine, which I didn't really need on ordinary days, so didn't take.

I had no idea it would take so long, or that a different radiation therapist would be making more marks on me, putting stickers on me, again and again.  And more x-rays to be sure they were aiming at the "tumor" area.  Before they were finished, the pain from holding my arm up was so terrible in my arm, shoulder, and neck!  I was shaking when I got dressed and afraid I might vomit.  After a quick trip for groceries, I was still shaking. 

Through the whole month, two particular radiology therapists were incredibly kind, gentle, and friendly.  They brought me out of the radiation session and into the real daily, happy, funny world.  I don't know what I would have done without them.

No, I may not say all that on the form, but most of it, maybe I should.

1 comment:

Katie said...

Yes, you should!