Posts Tagged ‘breast cancer’

Transition to Cancer Survivor

09 August 2014 Written by Lois Hjelmstad 2 Comments

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)

 

 

 

Unwanted Anniversary Part 2

08 April 2013 Written by Lois Hjelmstad 0 Comments

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

11 March 2013 Written by Lois Hjelmstad 6 Comments

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

31 October 2012 Written by Lois Hjelmstad 1 Comment

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)

 

 

Questions No One Should Answer

22 October 2012 Written by Lois Hjelmstad 2 Comments

Telling Knots has a great post on the thoughtless questions people ask of breast cancer patients and how people try to find reasons for illness and/or death.

Somehow we think that if we can assign blame and identify what the patient did to get cancer, we will know what dumb things not to do and therefore we will be safe from a breast cancer diagnosis and subsequent recurrence. This also extrapolates to any other randomness of biology and whatever accidents one can imagine. 

Her blog is very apropos for October's National Breast Cancer Awareness Month, because over 40,000 breast cancer patients still do die every year. No way is it their fault. 

And most breast cancer survivors do hear many of the things Telling Knots has heard. You will be very interested to read her post. She nails it. 

What I liked best was her conclusion that the tactless questions others direct at us actually say more about them than they do about us. And instead of answering, perhaps we should say, "Why do you ask?"

This makes me think of the afternoon that my Uncle Bill called, soon after my second mastectomy. After some small talk he got right down to the nitty-gritty and asked: 

"So they cut off both your tits? What will Les do now?"

I did not write a poem about the incident. If I had, should it have said

Good grief
Beyond belief
Should I debrief?

What are some better ways to relate to your friend who has been diagnosed with breast cancer?

 

 

 

 

 

 

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