CANCER - a link

My pal Larry sent me a great link this morning:

Carmela Does Chemo on Blogspot.com.  The whole topic is scary for me (though I'm considered cured without chemo) but her writing drew me in.  She has kept her sense of humor and writes about reaching for and keeping her patience. And  there's a brief mention of dealing with "customers" at her job who ask how she's doing.  

It's worth reading just for her courage in telling all.

The passage about waiting two hours for her chemo, and her question to the others in the waiting room makes me want to keep calling, nagging, yelling for a patient voice in patient care! 

CANCER TREATMENT - Who's the boss? . . . Part 2

Patient power.  A voice.  It comes in unexpected places.  Or do we just hear about it when it's part of an interesting story?  

Yesterday I read an article that started with a story about a woman patient on the California Redwood Coast.  What's interesting about her?  She's called a patient representative.  Not in a nationwide, highly publicized mega-organization, but in a doctor's practice!

The doctor has weekly round tables, including patient representatives, as part of a program to improve outcomes.  One day, this woman went home and outlined her five-point plan that could improve the practice.  She presented it at the next round table, listened to the reactions, answered them, and got some respect.

I want that.   

Why wait for a hospital patient feedback survey that will probably never present our plans and suggestions to a doctor or administrator?

I've read that many hospitals do have patient advisory boards. I've lived in seven cities and never heard of one.  This practice in this tiny town has one.  

I want that. I want patient representatives to have real voice and real contributions that get accepted and tried.  

Don't you?

PS My apologies - I believe I read the article in MEDPAGE daily headlines, but it's lost to me right now. 

THE MAMMO vs PHYSICAL EXAM STUDY - A few buts

MedPage today headlined a 25-year Canadian study showing that in certain age groups, mammograms found  few more actual breast cancers than manual exams, made some misdiagnoses, and didn't prolong life.  This reminds me of some posts from Breast Cancer Action, San Francisco, as recently as October.

This Canadian study seemed, to a layman, well conducted, well designed, and well reported.  But this is the real world for my age group and maybe yours today. . .

First, I hadn't had a manual breast exam for years until after my call-back mammos resulted in a biopsy that showed cancer.  Then the surgeon did a manual exam that seemed to be in the area where the abnormal cells had been found.  By then, surgery seemed to be inevitable.  I still haven't asked him if he could detect anything manually!

Second, my in-the-shower breast exams have been hasty or neglected more often than not.  Besides manual exams by physicians, the study mentioned "usual care in the community." I'm betting that also included self exams.  So mammograms are better than doing nothing.

Third:  Who am I comfortable with for a breast and pelvic exam?  In CA, I was totally comfortable with my doctor, and I've had reasons to prefer a male doctor, but there are some males I wouldn't be comfortable with giving me a breast or pelvic.  With Tamoxifen, I'll have to ask myself that question as soon as I meet a doctor.  

Fourth:  Mammograms have been almost automatic for so long, do all primary physicians know all there is to know about manual breast exams?  I don't know a gynecologist here or in CA - do women go to gynecologists for their pelvics?  Do gynecologists even do breast exams? 

Who you gonna call?

DCIS: Was I a Medical Illiterate?

I recently read an article in Proto magazine called Comprehension Test, that described some tests given to people who possibly read below sixth grade level, to see if they understood possible written directions about their treatment and medications.  

But there was more:  about people who are not medically literate, and a few words about people who are old, sick, awakened exhausted in the hospital, and so on.  (Of course, I bristle and snarl when someone groups people as "old."  One may be bewildered, hard of hearing, or with grey hair a few birthdays before middle age.) Oh, and there was a tactful mention that an educated person may still not be medically literate.

When I wrote to the editor, I called myself medically literate, because of where I've worked, what I did there, and research I do. 

Then I described the day I went to talk with a radiation oncologist and ended up with marks on my breast, pounds of literature, a permission slip I'd signed, and the vague idea I'd already been in the radiation treatment room.  Too many people telling me too much, bewilderment, sensory overload, and serious "overwhelm."  

Neither the books, the web, nor the video they showed prepared me for what would really happen that day and on one subsequent treatment day.

Do other women really search the net and make a good purse list of questions on breast cancer before they report for the "callback" mammograms?  Am I the only one who didn't demand to know exactly what would happen in the radiation center that day or later?  

How much medical literacy are we responsible for?  How much should the doctor be aware of what we are able to take in?  Who is responsible to be sure a conversation and not a speech is taking place?  

Long ago, my beloved California primary doctor told me:  It is important to be heard!  But this is not the first time a diagnosis was so serious that I needed the doctor to make sure I knew all that would happen next.




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A RANT ON PCMH ("Patient-centered medical homes")

This morning KevinMD.com brought up some medical groups I'd never learned about: Patient-Centered Medical Homes.  I'm very unhappy about what I read and what is being spent.

I had occasionally seen a website on these "homes," wondered what they were talking about, but never checked into the concept and how they work.  More important, I don't even know how to keep from getting into one by accident.

According to Jan Gurley, MD's article, the PCMH patient loses her ability to change primary doctors!  Not a chance.  I've gone without some things to keep the Medicare supplement that allowed me to stay with my beloved L.A. area primary doctor.  Why would I give up the ability to choose?

The footnote said Dr. Gurney blogs on DOC  GURLEY.   The link sent me to a website: docgurley.com.

I'll be doing more research on this topic, but first I'll be writing to the White House about how scary this concept is so far for me.

I wish you health.  And medical care freedom.

FIRING A DOCTOR

At least one hospital has given me a "patient's bill of rights."   I can't find a copy right now, but I remember one of the rights was "the right to be treated respectfully."  

My experience is that the doctor's office staff is often far less respectful than the actual doctor.  Being scolded, even in what seem to be careful word choices, is still being scolded.  

In my new state, Texas, I have become a patient of several new doctors and a dentist, plus some radiation therapists.  I have sometimes been unhappy, but I had to move forward since the diagnosis of DCIS.  And once, a few days ago, I was furious at a doctor's staff member.

Things that make me unhappy:
Doctors who refuse to talk on the phone.
Printed procedure prep instructions with some steps left out.
What seems to be plain carelessness in prescribing.
Not listening to my exact symptoms and the way my body feels.
Staff members scolding.

I'm reminded lately that a patient and a doctor may have personalities that don't mesh, or philosophies so different that the patient is uneasy.
(I don't have to decide if the doc is a jerk or the staff needs behavior modification.)  I just have to leave.

So now  it's time to build a happy medical support group, as I try out Tamoxifen and care for other medical concerns.   

My lumpectomy surgeon, a really kind, friendly, and skilled man, recommended a medical oncologist I like so far.  A friend knew an ophthalmologist group I like.  A close friend likes her primary physician. Decisions.

What I say after I meet a doc or radiation therapist I like: 

He talked to me like a person!
He knew in 30 seconds it was my spine, not my leg!
In five minutes, he took my anxiety away!
We can make each other laugh even when discussing cancer.

Have to quote Sir William Osler again:  It is much more important to know what sort of patient has the disease than to know what sort of disease the patient has.  

If only that would fit on a tee shirt.

WHO REALLY KNOWS How to Take Care of Ourselves

If you are a patient;  if you are a patient who was taught to smile and always follow the rules; if you believe you are taking care of a patient. . .

Please read yesterday's (Friday's) PULSE Voices from the Heart of Medicine:  She Sits on the Curb in Her Hospital Gown.  That patient inspires me.

Since radiation is over, I'm considered "cured" of DCIS.  But to keep breast cancer away, I should take Tamoxifen for five years.

And, for the rest of my life, I must dare to do what I know inside is taking care of myself. Please dare to take care of your soul and your need for pleasure, no matter how it looks to others.  And remember laughter is healing.  So is singing.

If you are a caregiver, let your patient dare to live in a way that takes care of himself, or herself, not just the hospital way.  Please read She Sits on the Curb. . .

PS

Falling asleep is not easy without my diphenhydramine.  Giving up my Zone Perfect soy bars is easier.  I've switched to "Oatmeal to Go" for now.  The soy milk is down the drain. Oh well, without it I'll probably drink less decaf.