Posts Tagged ‘breast cancer’

Transition to Cancer Survivor

This morning I read an excellent post on the transition from patient to survivor (http://quivervoice.wordpress.com/2014/08/07/picking-up-the-pieces). How do we go about our lives during/after a bout with cancer?

Nancy's post prompted me to review what I wrote in Fine Black Lines and I'd like to share that with you. Be sure to read Nancy first!

"Several years later, thinking that I had always handled my cancer well, I reread my diaries, absolutely shocked by how much my present perception of what I had experienced differed from what I had written at the time.

"And I realized how similar I was to the women who join our support group hoping to learn how to deal with their newly diagnosed cancer. How arrogant of me to think they should be where I am now. How essential it is that each woman ultimately find her own way. How important it is that I tell my story as it really happened, not as time has softened it in my memory.

"And yet, as some come with their terror, I see myself and others shrinking from recalling our early horror, trying to convince ourselves we were different from them.

"And when others come with a strong sense of denial and a most determined bravery, I feel great sadness–seeing the cloak of innocence they wrap so carefully around them, unaware how much it has already frayed."

(Excerpted from FIne Black Lines: Reflections on Facing Cancer, Fear and Loneliness, Copyright 2003, Lois Tschetter Hjelmstad. See http://ow.ly/gumLP)

 

 

 

My Marriage Book – FREE Download Today

Today's the day! You can click on http://www.amazon.com/dp/B00BT4P0SI and download a FREE copy of This Path We Share: Reflecting on 60 Years of Marriage for your KindleGary Hall formatted it beautifully for eBook. (Find Gary at http://www.greystrokecreative.com.) I am pleased that This Path has seventeen five-star reviews so far and has won three awards.

I worked for a long time on this book. Years longer than I worked on the other two. Perhaps I was afraid that if I finished the book, the story would end. Finally I realized that if I did not complete it before either Les or I took seriously ill or died, I never would. I finished the book. Unfortunately all stories do end. 

I worked especially hard on the last chapter. I wanted it to be just right. And I toiled intently on the last three words. For days, actually. (Of course I won't tell you what they are right now. Gentle smile).

And as it turns out, they were easier said than done.

I hope you find encouragement, entertainment, and, maybe, even a little inspiration.

And Happy Valentine's Day!

(If you don't have a Kindle, you can download one for your PC.)

Unwanted Anniversary Part 2

After my diagnosis of chronic fatigue syndrome, I was embarrassed, mortified. What had I done to cause it? Had I worked too hard? Was I too much of a Type-A personality?

Please let me continue the excerpt from Fine Black Lines:

"Aside from Les and our children, I told no one about the diagnosis for two years. I tried to hide my symptoms, rested on the sly, and made excuses so I wouldn't have to do so much. I felt a sense of shame in having an illness that was portrayed with such triviality in the media. CFS was dismissed as the trendy disease of the late 80s–the Yuppie Flu.

"It felt neither trendy nor yuppie to me. I was 58; I was a little old gray-haired piano teacher, for goodness' sake. But I discovered what it is like to not know at 10:00 a.m. how I will feel at noon, to stand at the foot of the stairs and wonder how I will make it to the top, to be too tired to lift a pencil or hold a book, to have to rest two hours every afternoon and go to bed by 8:00 or 8:30, to play the piano and have a finger 'lock up,' to have to wear a jacket with pockets (even on a summer day) to carry my arms, and to forget an entire thought in the middle of a sentence.

"When I was diagnosed with breast cancer a year later, I almost felt validated. At least everyone understood that disease and its implications. Almost everyone has heard of the terror, the incredible sense of loss, the fear of disfigurement and death.  [At this point, I’m not so sure how many people actually understand, but that’s how I felt then.] 

"There has been no way to sort out how much of my weakness and fatigue comes from CFS and how much has been caused by the cancer surgeries and treatments. I do know it is likely that CFS has caused at least some of the difficulty in recovery and some of the residual pain in the surgical areas.

"And I know that writing has been a lifeline to reality and healing.

"Still, I did not intend to write a book. But when I shared my writing with doctors, nurses, and friends, they encouraged me to share my experience with a wider audience.

"Sometimes I laugh and say I had three things to get off my chest–this book is the third."

To be continued…

Hierarchy

Last week I read an excellent post from Marie Ennis O'Connor on "Is There a Hierarchy Among Cancer Survivors?"

Then this week that discussion was followed by another excellent post and discusssion at Regrounding. Even though the topic has been quite thoroughly and thoughtfully covered in these previous posts, I'd like to add a bit.  

So, is there a herarchy among cancer survivors? Is there one in breast cancer circles?

Having spoken hundreds of times to quite diverse cancer support groups, as well as to oncologists, nurses, and others in the cancer community, I have experienced many layers of:

  • You didn't have chemo, so what gives you the right?
  • Your lymph nodes were not positive, so you're home free.
  • You're lucky it was only breast cancer.
  • You aren't Stage IV. Everything else is a piece of cake.
  • You didn't suffer as much with your treatment; you didn't have chemo before Zofran: you didn't burn and peel with your radiation.  
  • You can't call yourself a victim; that shows you are weak.
  • You can't use battle words; or, you must use battle language.
  • Your chronic fatigue syndrome didn't totally put you in bed for years. (Forgive my straying into another disease. But I've heard this a lot.)
  • You must identify as "survivor," "thrivor." "victor," "totally made it." (Forget about the part that breast cancer can recur years later.)
  • We must be brave, courageous – keep our friends, family, casual passers-by reassured.

 

I've also lived quite a long time. Guess that puts me pushing toward the top of the hierarchy of "I'm older than you and I know better." But maybe I won't play that card, even though with all of this well-earned gray hair and many wrinkles, it is terribly tempting. 🙂 

Let me repeat some of what I commented on Marie's blog (with amplification):

There is always hierarchy. Everywhere. In every circle – family, sports, health, illness, religion, politics, young, old, male, female.

I don’t know if it is more prevalent among women than men; it may seem so in junior high, but it probably just exists in different arenas.

There is something within us that seems to compel us to play one-upmanship. In disease circles, maybe it is self-preservation. If I can figure out what stupid thing you did to make yourself sick or caused yourself to die, I can avoid that and save myself indefinitely.

I try to guard myself against participating in hierarchical maneuvers, but certainly don’t always succeed. I have deservedly been put in my place a number of times.

When I am the recipient, my hope is always that I can find the grace to give the other person the benefit of the doubt – realizing that there is no way I can walk in her shoes or divine her motives or identify her. I simply do not know why he or she has chosen that path or why he or she needs to de-elevate me. 

On the other hand, no one can put me down if I won’t go down.

A Final Poem for October

Affirmation

The breasts are gone
but I am
whole

Disfigurement
need not include
my soul

(Excerpted from Fine Black Lines, copyright 1993, 2003 Lois Tschetter Hjelmstad)