A protocol for Oncologists (for my perfect medical world)

     

A Protocol for Oncologists!

Just as breast cancer oncologists have a protocol of pateients’ treatment they follow, here is a protocol for the oncologists themselves.  Having a good relationship with your oncologist goes a long way in managing the illness.  I’m well aware oncologists are overworked and overburdened by a number of factors but these simple steps can help your patients immeasurable. Based on my personal experiences I’ve established this list.

1.      Don’t threaten the patient.  This doesn’t lead to compliance but can make the patient distrust the doctor.  I was told by an oncologist after she filled a whiteboard with indecipherable names of chemotherapy, that if I didn’t follow that I would be dead in a year.  I never returned.

2.     Don’t call with negative results of scans or tests before 9AM.  No one wants that early morning call with bad news.  Sometimes with good news of a clear scan or procedure I never received a call with that information at all.

3.     Your patient isn’t just her or his cancer.  Be aware of other signs that may indicate depression or other health concerns.  Ask.  Don’t just ask about side effects of the treatments.

4.     Be informed of alternative treatments.  Most likely your patients are and may be using different therapies. 

5.     Be honest about projected outcomes, but once again, don’t threaten.  However, don’t give false hopes either.

6.     Let the patient deliberate on which treatment options are available.  Don’t rush the patient.

7.     Give your patient information about the effects and potential side effects of treatments or medications.  Possible versus probable is important here. 

8.      Don’t be stingy with anti-anixiety or pain medications.  These can make life tolerable.

9.     Learn from your patients.  There may be hints you can pass along to other patients.

10.  Ask the patient what he or she can do to feel better.  Leave something in the patient’s hands.  It could be as simple as taking vitamin D or doing gentle exercise.

Christmas- past and present

The Christmas fantasy is upon us once more.  What is all the hype telling us?  Are we  supposed to participate in huge family get togethers and sing carols?  Champagne flutes clinking as we raise our glasses dressed in sweaters decorated with reindeer and holly?
      Yes, but....
      Growing up in a Latvian household we celebrated Christmas with a tree.  Was Latvia really where the tradition of a Christmas tree originated?  Our neighbors had a tree farm so we ventured out to choose one and chop it down ourselves.
      Another tradition we did follow was filling out endless Christmas cards (the Latvian community was spread far and wide), signed with vele Peipins gimene.  For some reason my father's favorite Christmas charity was Boys Town where you filled out a prayer request.  His was always for family peace.  Maybe he had an inkling of what the future would bring.
      Santa played no role in that world  As small children my sister and I waited for Santa to show which unfortunately he never did.  We were gifted strange items from my parents' friends like fruitcakes and skates which didn't fit.  It wasn't that we never had presents.  My father always brought us books and treats every time he went to Buffalo for medical treatments which was once a month.  Our  uncles kept us in chocolates and candy. Birthdays were big affairs.  One year I got a enormous teddy bear and another year, a small piano. These gifts just never coincided with Christmas.
      Christmas was a holiday that didn't fit.  My years in Spain provided relief from the hype.  Christmas and the day after, San Esteban (Boxing Day) were days of big meals in Barcelona.  A Christmas soup made with many ingredients and days of preparing required a round pasta that was so big it fit on a soup spoon.  Dessert was always turron, a sweet almond nougat.  Gifts were never a big deal, just a small token.   In fact, gifts were often a business proposition with  work places giving lotes ( boxes that often included a Spanish ham) or at least wine or chocolate. 
      I enjoyed a few Christmases in Atlanta.  My sister decorated and enjoyed giving and receiving lovely gifts.  These years I spend the holidays with my partner or friends.  As one of my single friends says this holiday is stressful enough without being part of someone else's family drama.
      What is the solution for those of us not blessed with an abundance of family?  I was relieved when my partner said he was happy to celebrate Christmas with me.  We'll have a nice meal, Spanish style, enjoy the gifts from my sister, and the cookies (American ones are the best) a friend has baked.  We'll be grateful for the light and the possibility of a new year filled with joy, good health, and a touch of adventure.

The Medical World

           

          With the latest news  where once again, women have been ignored, I have to consider the medical angle.  How are women treated by the medical profession?  I have myself as an example and having spent two years in the medical establishment in the treatment of breast cancer, I have a lot to say.

            Breast cancer- a woman’s disease, and statistically often, an older woman’s disease. We are the invisible members of society.  How does that affect treatment in terms of medical establishment?  Recently my brother-in-law was treated for prostate cancer.  His doctor laid out all treatment options and even asked what his profession was, being that male hormonal treatments could affect the ability to do some intellectual work.  Wow.  I was never asked anything of that kind ever.  Perhaps it’s because women are given hormonal treatments of all types from birth control pills to menopause (and we know how that turned out).

 As a matter of fact, my oncologist accused me of reading about the side effects of one of the anti- estrogen treatments I was prescribed (an aromatase inhibitor).  No doctor ever mentioned any side effects to me.  I read many reports by patients themselves on various online sites. Statistically the compliance rate of taking these meds is about 40% due to the severe side effects.  Granted, these drugs can certainly extend your life if you can tolerate them.

            The other situation I’ve found in the medical establishment is attitude.  Is it because I am an older woman I’m not taken seriously? I am expected to follow every thing the oncologist tells me or I am yelled at.  Most recently my oncologist said the recurrence of cancer in two lymph nodes was my fault.  Blaming the victim?  I was told by a female surgeon that was because the oncologist cared.  I don’t think so.  This is the man who has been pushing me to take the 10,000$ per month medication that causes hospital grade diarrhea and is not approved by the European Union because its effectiveness is limited. 

            More pink?  I don’t think so.  My mother died of breast cancer decades ago.  She made it to that magical five year survival rate.  Drugs have changed but not nearly enough.  Anti- nausea drugs make chemo just a bit easier but the rest of the horrors remain.  Hospice certainly helps end of life.  Maybe the end isn’t quite so horrific and dragged out as it once was.  That’s what I’m clinging to, whether that end comes soon or decades down the road (if I’m optimistic). 

Cancer is not a battle as I’ve mentioned before.  It’s an acceptance that this is a new way of life.  I can see the beauty of Blake’s lines- “If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro' narrow chinks of his cavern.”   This comes in flashes I have at the beauty of life itself or when I am amazed I am here, that I have a new novel out, that I am working once again.

          The other side is physical pain and an underlying anxiety.  In my case anxiety manifests as an imaginary dialogue I have with doctors explaining what I am experiencing.  In an imaginary future, I’m one of those radical remission survivors giving talks about survival.  In the other, well… we all know.