My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, May 14, 2015

Back again!

I'm so sorry it's been so long since I've posted!  Life has been very busy, I've been working full time and going to school full time.

I was teaching in a college nursing program, and our school just closed, so now I am only going to school and not working!  I graduate with an advanced practice nursing degree this August, so will just go to school until then.  I will have a Masters degree in nursing and will be an oncology clinical nurse specialist.  A CNS of four advanced practice nursing degrees.  

I taught oncology in my college to my student nurses.  They knew I was a survivor, I shared my story.  Aside from diagnosis and treatment, we talked about the personal aspects a diagnosis has.  I shared with them the things I felt they should NEVER say to cancer patients:

1. "You need to stay positive!!!"   I had people who felt I would not survive if I didn't stay positive.  That staying positive was vital to a cure.  This is not true, and it's unrealistic.  Research has not shown positive thinking to affect cancer survival.  Jimmie Holland, a renowned scientist and psychiatrist who has worked for years with cancer patients (and who was still working full time at 80!) wrote a book, "The Human Side of Cancer: Living with Hope, Coping with Uncertainty" , a book I read shortly after I was diagnosed.  BTW, I got to meet her and have lunch with her at a cancer conference!!!!  She founded the field and science of psycho-oncology.

 The second chapter in her book was "The Tyranny of Positive Thinking".  Expecting a patient to think positive makes the patient feel their attitude is responsible for their survival, it places a burden on them.  I told my students, when faced with losing everyone you love and involuntarily abandoning your children, losing everything you own and losing your future, it is normal to feel the negative emotions of anger, fear and sadness.  Many cancer patients become depressed....that is normal.   The best thing you can do is listen and support them through their negative emotions.   For many people I felt I had to fake a positive attitude and that was very difficult.  The person who was the most support to me at the time was the person who let me sob as I talked about possibly dying and leaving my children motherless.

2. "Now you understand how to live one day at a time and to stop and smell the roses!  How wonderful".  Okay, that means you live contemplating dying and losing everything tomorrow.  I did live that way for awhile and it was a kind of hell.   I couldn't make a 6 month dentist appointment, I couldn't say the words "next year", I couldn't plan a vacation.  I couldn't contemplate going back to school.  I couldn't imagine seeing my kids graduate from high school, driving a car, their first boyfriends.  I lived one day at a time.  I lived CT scan to CT scan.  I could only plan my life in 3-6 month intervals between scans.  It is a hopeless way to live.  We all live for dreams of tomorrow, even if we are enjoying today.  Hope involves tomorrow.

If you work with or communicate with cancer patients, be careful what you say!  Try to be empathetic, put yourself in their shoes!



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