In the medpage article a week ago, on lack of lymphedema awareness, Dorothy Pierce, RN, a radiation oncology nurse and author of a small study, is quoted as saying:
'"Either the surgeons are not [telling them about lymphedema] or the patient is not listening,"'
I need to say: any announcement that the patient is not listening is one announcement too many. I have to wonder respectfully if perhaps Nurse Pierce has ever been diagnosed with breast cancer.
What could make the patient seem not to be listening? Maybe shock from the news? Maybe too much med-speak? A million statistics? Maybe information overload?
With breast cancer, the voices have already started: "You need to report to the Breast Center for more films; you need to talk with the doctor; you need to come back for a stereotactic needle biopsy." You need to come back to the hospital and meet a biopsy doctor, (so I did.) You need to, you need to, you need to. Long before lymph is in the picture, the overload begins. We learn that the nurses and doctors know a lot of words we don't yet know, and they aren't all expert at explaining.
After the biopsy, in my sleek flapper-look compression bandage, I went out for coffee. But reality was closing in. Then the phone call. The doctor who had done the biopsy sounded so cheerful when she said "There was cancer." Three words that can feel like the world changed - and maybe it did.
And she said: Call Dr. H., we work with him all the time. Another doctor. Steriotactic biopsy (which I now know I was lucky to get) was only the first of a landslide of new terms, some explained well, some not. We get a book, we get on line, we get written and audio overload. We learn that no two famous cancer hospitals agree on everything.
Luckily a kind survivor and friend said to me after my DCIS was diagnosed:
"Hearing that word cancer is overwhelming."
We are paying attention to how to deal with our families, our bank balance, the idea of other new doctors we may have to meet. We are trying not to think "Am I going to die?"
Only the doctor or other provider who is talking can be sure that a conversation, not a lecture, is taking place. That is a skill. Their long speech followed by "Do you understand" often provokes a Yes, as in "Enough! Let me alone." We may think we understand, then get home with more questions, too tired to try to get the doctor on the phone, if indeed our doctor talks on the phone.
We can't absorb a quickie medical school in a couple of visits. We listen. We try to pay attention.
The great doctors and nurses, and people like my two beloved radiation therapists, know how to pay attention to us.