Monday, March 24, 2014

PATIENT SURVEYS - Useless? Poorly worded? Hard to answer?

First, I said here weeks ago that I would fill out the radiation area survey right away.  Didn't.

Second, I got two surveys for the radiation department.  Now one here on the desk.

The Type of cancer section gives me lots of other diseases to be scared about.  I fill in Breast.

Then it wants to know Date of Visit.  The guy who wrote this seems to think 1 day in the radiation center will do the job!  And somebody approved this questionnaire.

I fill in First time (for this cancer)  and Female.  They thoughtfully have 3 spaces for our age.
Then I can choose what happened on the last visit.  Follow-up is one choice, but I never had any follow-up!  Interesting.

(I did call once about whether I can have an x-ray now for another medical problem.  But I've never asked again to talk to the doctor about my breast and some pain I had for a while around the breast on the side of the boost.  I'm afraid I'll get the regular nurse, who has not helped much.)

 There's a part B for registration, and I literally don't remember registering.  I just made the appointment to MEET the doctor, but then I was rushed into way too much.  The whole day was a whirlwind.  I think I took my pathology report with me, but maybe they got it from the surgeon.  They made me put on a gown and robe, and watch a somewhat useless video!  I also had to spend too much time with a social worker.  Where to write that on this questionnaire?

Now the doctor section.  I feel like she will definitely find out that I'm the one who wrote this!  Argh. Paranoia.  I don't know how to say how I felt about her.  I wrote that I was overwhelmed, that she talked AT me, not WITH me. Rushed past my fears of side effects.    

It's hard to answer questions about the staff - two radiation therapists just saved my sanity.  Two others were not helpful or supportive.  I'm trying to find where to say that on the form.

My answers on the radiation therapy are all over the map.  I believe the doctor is good at the radiation and so are the people involved in the "control room."  But I had to say I wasn't emotionally or physically prepared.  I told about the amazing pain in my arm during the boost, and the sensory overload of people rushing in and out, uncovering me dozens of times.

I couldn't wait until I got to the part about what was best!  I always want to talk about my two wonderful radiation therapists and Dr. Kaiser.

And the last thing I wrote was that I believe the actual radiation treatment was the best possible.

Well, it's all filled out.  Even while I was complaining, I am aware that I may have been the "least sick" and the least in pain, and the least scared of anyone they saw in those months.  But if I got someone's attention, maybe I made it better for the future, patients who are really suffering.


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