How Not to Endear a Patient to You
Disclaimer: If you're squeamish (I am!) skip this blog entry.
Today was the post-op appointment with my surgeon. They set up the appointment so that first I would meet with the nurse, then twenty minutes later I would meet with the surgeon. Another nurse filled in for my surgeon's nurse, who was on vacation. She checked my incision and started to remove the stitches. I found out that the little kit with the tweezers and suture scissors is labeled "single use," so they have to put them in medical waste right away. I asked if I could keep them. That's when we found out we were both crafters and bonded!
That was all well and good, but then my breast started leaking like a fountain. OMIGOD! Clear fluid just kept coming out of the end of the incision. We grabbed gauze sponges and did our best to absorb the fluid, going through packet after packet.
The nurse asked how I had been handling recovery. I mentioned that the hospital had marked "strenuous activity after 2 days" and while I moved some furniture a few days later, I was tired. She stared at me, shocked. She said they should have never marked that. The nurse said, "Well, if you, say, lift heavy things, what can happen is that you get swelling." She pointedly looked at me, then my breast, then rubbed her chin. "That's what could happen."
I guess normally the breast tissue re-absorbs the fluid, but mine hasn't been doing that. After some time of sponging it up, she left me (gauze sponges clutched to one breast) to wait for the surgeon.
And wait. And wait. And wait some more. I waited so long that the lights in the exam room turned off because I was sitting too still.
The surgeon was scheduled to come in at 2:20 pm. She came in at 4:05 pm. That's an hour and forty-five minutes late! Of course I had forgotten to bring a book...not that it would have been easy to read one while nervously holding all that gauze in place.
When the surgeon did come in, I think she spent five minutes with me. She prescribed an antibiotic to ward off infection in my breast and then asked if I wanted a printout of my pathology report. Before going to get it, she asked if I had any questions. I said no, figuring that I'd ask questions when we went over the report together. She came back with an appointment with a medical oncologist who she said was great, and the prescription. I reminded her about the pathology report. She stepped out briefly, then came back and handed me a four page pathology report. Then she said she'd see me in three to six months and she LEFT.
I sat there for a moment, dumbfounded. Wasn't she going to offer up any information? Weren't we going to review the pathology report together? Instead I was left with an appointment in two weeks with another doctor, pages of medical-ese, and no understanding of the results of the surgery.
I wandered out in a daze, breast throbbing, and made it to the downstairs lobby. Pulling out the densely printed report, I sat there and read it carefully. On page 4 I learned what I needed to know: the cancer is positive for estrogen and progesterone receptors (that's good) and negative for Her-2/Neu protein (also good). It is grade 2 (that's not great but not the worst). And that's it.
The fancy-pants report I was waiting for (Oncotype-DX) that tells me my recurrence score-so that I can figure out whether it makes sense to do chemo-wasn't there.
Honestly, I felt mad and frustrated. Why should I have to ask for basic information that should be explained to me automatically? Why weren't all the tests done? I left a message for the nurse asking about the Oncotype-DX. She called back at 7:30 pm and told me that the test was never ordered. Because of the cost, it has to go through approvals and I must agree to pay for it if insurance does not. I told her that's fine, I want the test, so she sent messages to my surgeon and oncologist to start the process.
I feel like I've lost ten or more days that could have been spent processing the Oncotype-DX test. It may not sound like long, but when you are waiting to find out whether or not you should have chemotherapy, it seems like a thousand years. Heavy sigh.
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