LUMPECTOMY- THE SEQUEL . . . How was your visit? Lousy?

In the entry to the Cancer Center is a poster or two, illustrated to resemble an oversize Patient Satisfaction questionnaire. I've already had several since the diagnosis.

If you're like me, often the questions don't touch the way you feel. Like the fear when one of your meds has disappeared from the electronic meds integration system that relief people can't operate.  I don't recall a question about the atmosphere or the lack of windows.   Or the equipment. Or the room arrangement that keeps me from seeing a seated visitor.  Or you name it.

And from what I read on line, administrations may use my answers to give lower evaluations to  caregivers and staff. So, when I get a questionnaire that demands I fill in every circle next to irrelevant questions, I know a machine will be reading it!  And someone will get the blame, maybe someone who had nothing to do with the problem.

A machine can't read the comments section, so does it go unread on that type questionnaire? I can write to the administration or even the board, or a website and ask for this type to be discontinued.   If I suspect the machine, I can staple on a paper with my comments.

And also, I can call the patient advocate, if that institution has one.  And I can tell my story on a website that takes comments from patients.

I can think about what caused something, like yelling in the corridor !  Is it just that they are understaffed and each one is far from the person who is asking a questions?  My answer can mention that in a popularly  priced, busy restaurant in CA, a manager with an earpiece solves problems by phoning someone or by taking action himself.  Just like the Secret Service.  Voila!  NO yelling.  I can mention that to a patient advocate or a hospital administrator.

I can start TODAY on that questionnaire I can't bear to fill out because most of my memories of that post-surgery rehab are not good.

But what I always must do is mention any caregiver who is kind, cheerful, and way above average - like the patient aide who brought me some floss threaders from home so I could clean my dental bridge!  Or is there a rule against giving a patient floss?

LUMPECTOMY - THE SEQUEL . . . Symptoms -- What hospitals could do

NOTE TO ARCHITECTS:
 Saturday night, too tired too take a shower or do a load of wash, I read some more of The Shape of Green, by Lance Hosey.

Here's a quote about patients and symptoms:

". . . at one Pennsylvania hospital, patients with garden views went home nearly a day earlier than those facing a brick wall. . . . So the quality of light, movement, and patterns must be important.  Yet. . . environmental psychologist Judith Heerwagen . . .and others show that even large photographs of natural scenes. . . lowering heart rate and blood pressure among stressed patients."

Also:  "A Carnegie Mellon study linked seated views of windows to a 20 percent drop in 'sick building syndrome' symptoms, including fatigue, neck and back pain, eye strain, headaches and irritability."   If only architects read these studies and persuaded hospitals to do the math.

In the Cancer Center radiation treatment room, as I mentioned recently, the overhead light shines through panels painted with flowers.   There is a good painting of nature in the waiting room, but I wasn't in there long enough to lower my blood pressure Friday.

 The exam rooms where we wait to see the doctors and hear the news are often where we need a nature view; but usually the only chairs have their backs to the window.   Then add the full-color drawings of horrible diseases, and feel your blood pressure soar.

Let's not pretend that hospitals and medical buildings can't remodel to make windows to healing views more possible.

You know I'm going to talk again and again about this.  And don't get me started about that garden accessible only through the administrator's office. . .

LUMPECTOMY - THE SEQUEL . . . . Radiation fatigue and skin

Yesterday, Saturday, started out great - busy, but with energy.  A kind person who has been through radiation gave me a present - the Aquaphor he used on his skin during radiation.  Talked with friends for quite a while.

Didn't go out for usual decaff.  By mid-afternoon, needed a nap. Slept hard enough to dream.  Climbed the stairs at the library, one of my no-skipping-this exercises, slowly.  But before I was through at the market, felt a little tired again.

Got the food into the house and made myself walk around the corner to the mailbox.  By then, the effort of taking a shower seemed like it would have to wait for morning.  What saved me??  Got my second wind earlier. Laundry's in and swishing.

SKIN

Since I wash my hair in the shower, shampoo irritation may (or may not) become a breast skin issue.   I went through the market's healthy living section and read every word of several shampoos' ingredients.  Settled on baby shampoo called Cocoon baby.  No phthalates, no parabens, no sulfates.  Also looked at one made by the company that makes my non-irritating leave-in hair conditioner.  I'll let you know how Cocoon baby works out.

In closing:  Just as not everyone has serious breast skin irritation, so everyone, including you, may not get fatigue.  Best wishes.

LUMPECTOMY - THE SEQUEL - More on day 9, blood pressure and psychology

Taking off my coat, I saw a small woman come into the waiting room.  She looked like a small and delicate very young woman.  It was my doctor.  We went into a treatment room with a new nurse.  The doctor even seemed more friendly and relaxed.  Is this me?  Finally getting comfortable with her?  Or just her after a few days off?

She asked about my energy.  I have taken a nap on some days.  Maybe I do need more rest to be less fidgety and finish the gift drawing and painting for my family.

My bp was 161  - too much rushing around.   I remember that passage in Bling that said after bp 145, all systems are definitely not Go, or words to that effect,  and some motor functions are disintegrating.
I don't to be driving when it's over 145

The nurse took it again and it was about 141.


Still haven't ordered an all cotton soft bra.

Good grief, another retraction:

I went back to the source of the discussion on tamoxifen, and it is a video transcript with a named woman, I have to assume that it is an actual doctor-patient discussion.  My apologies.

Note:  Apparently I really am more absent-minded since the diagnosis.

LUMPECTOMY - THE SEQUEL . . . Day 9 and meds and life

 .What I secretly wanted for Christmas was a headline in the New York Times saying that someone discovered a new long-term medicine to replace Tamoxifen and the others we have now. One with no side effects.   And that the new medicine would  be available as soon as I need it.  No bow necessary, no shiny wrapping needed.  No luck, but there are still a few days of Christmas.

No, I'm not dwelling on what happens after radiation, but the days and years ahead do sneak into my thoughts.  If you are concerned about the next step after radiation, you may want to look at this possibly hypothetical*  "discussion" between a doctor and a woman who wants to refuse Tamoxifen:

http://www.mdanderson.org/transcripts/icare_Tamoxifen.htm

Back to the present:
Yesterday, even the radiation therapist noticed the affected breast is a tiny bit pinker.  He asked me about itching.  Last night and this morning even I can see I'm pinker on the right side.

I was so busy yesterday drawing a couple gifts for the 12 days of Christmas, that I didn't get my late afternoon walk, so I did all my exercises with tiny 1 1/2 pound ankle weights and tiny 2-Pound dumbbells.  I even forgot to shower.

In between all of this, trying to reschedule my stomach medicine.  Taking it closer to supper didn't work.  I know I"m not the only one who has another health problem or three to deal with, right along with radiation.

I salute you who have so much to juggle today.

*  I don't have the details on whether this is an actual discussion
*  I apologize for the use of Arial in the publishes blog, it's hard to read, but can't fix

LUMPECTOMY - THE SEQUEL . . . Radiation Day 8, life

 After the second mammogram, the days flew:  meeting doctors, feeling rushed to have the steriotactic biopsy.  I guess they still fly by, but during the day, things seem to take a long time.

I actually looked up stereotactic:  it just means x-ray guided, image guided, or mammographically guided.  I haven't had breakfast, so I'm delighted that I can spell that.

 Because of the two holidays, radiation will actually go to the middle of January!  20 days.

Last week the radiation therapist said we're advised against wearing underwire bras.  I just told him I don't wear them.  I think what prompted him to mention it is that my soft bra slides around sometimes. When I looked in the mirror Monday, I saw that the band can be pressing on the softest lower edge of the breast.  Will a new bra be more elastic, and where it belongs?

Yesterday, I took one Christmas walk.  Spent most of the day drawing and talking to my younger daughter on the phone.  Forgot to exercise with my tiny weights.  Strong Women Stay Young says I can break up the workouts into 4 20-minute workouts per week.  I haven't hit four since I've been here.  Before the spine got so bad, (seems like another lifetime) I was doing floor work every morning.  Not possible here.

The list:

Put up a big sign based on the Breast Cancer Patients Rest in Peace post* that I hope you read.  Instead of walk for the cure, my new mantra is:  EXERCISE TO SAVE MYSELF!   Talk about deferred reward!  You can't just step on the scales to see if exercise is making you live longer.

 Order a new bra, same design, but is won't be older
Order a leisure bra just in case I have skin problems before the radiation is over.

* from Sunrise Rounds  http://sunriserounds.com