Cancer and Shame?

TraciInLA said:

What if? vs. shame

Ayse,

First of all...every one of us is entitled to feel what we feel, and I love that you're asking this question to try to think through your feelings a little more.  Good for you, and good for us, too!

For me, I think there's a difference between "what if?" and actual, full-blown shame.

I've definitely had lots of moments when I thought, "What if I hadn't taken birth control pills for so many years?"  "What if I'd worked harder to lose weight?"  "What if I hadn't eaten so much junk food in my 20s and 30s?"  "What if I'd started exercising sooner?"  What if, what if, what if...maybe then I wouldn't have got breast cancer.*

On the other hand, when I lost my hair, the reason I refused to cover my head (except when I was out in the sun) was because that felt to me like I was saying I was ashamed of having cancer, like I wanted to hide it, and that didn't feel right to me at all.  Again, each one of us has different feelings about this -- those were just my feelings.  That was the point where "what if" would have turned into shame for me, and I wasn't going to cross that line.

Traci

*Side note: I actually started a real, planned, consistent exercise program for the first time in my life about 6 weeks before I was diagnosed -- which proves that exercise causes cancer, and we should all avoid it!   

Totally agree with you.  I also have found during this process that I am awash in emotions because my body has so much going on with it.  Chemo drugs, anethesia from surgeries, new breasts, etc. kind of mess with you.  So, sometimes when I have felt shame (i.e., I feel badly that my husband has to deal with this mess), I have attributed it to the wild mood swings and such from my treatments.  It's totally okay to feel crummy sometimes.  It's part of the healing process and helps you deal with the reality of this disease.  Just know that there's no clear answers on why this happened.  I try not to focus on the past, but on getting through my treatments and using this experience as a chance to embrace fully the wonderfulness that is my life.  I don't plan on taking opportunities for joy for granted.

KathiM said:

I'm not sure what I would call it....

But there were days when I didn't feel enough myself to venture out.  I was very pale, had lost alot of weight from the chemo, and had lost my normal "To heck with everyone" sort of attitude.

The is a physical effect of cancer, sure, but there is also an emotional/mental effect...

It seems that when something rocks our world, as cancer did to me, it makes us all question who we are, and where we are going.  We can certainly not go back to familiar living, so we must reinvent who we are...in our own minds as well as in the minds of others...and that really, for me, made me feel very vulnerable for the first time in my adult life.

(You know me, shy, retiring flower)....I now celebrate that time as a sort of phoenix rising....I LOVE who I am now...and no one has the right to question my core beliefs.....my actions, surely...but nothing that is at the base of my being!!!

GREAT post, dearheart!!!

Hugs, Kathi

 

Each of you hit on things I've felt, too. I couldn't have written it better. It stands to reason that a physical defect in turn causes an emotional one.  I'm different now.  I'd say more withdrawn, and I make excuses to avoid many women's social events.  I haven't labeled it with an exact word, but I get it!  Linda 

I too have felt shame.  I didn't always realize it, usually something brought it to my attention,  One time I rememeber was being fitted for my prosthesis.  After we were done, and I left with my prosth...the fitter said "now those shoulders are square and proud instead of rounded and hiding your chest."  I still only go without my prosthesis when I can 'hide' my mastectomy.

The second time I remember, was the first day in my new branch.  One of my members. aka customers, said 'girl raise your head and hold it proud.  You're here aren't you?"  Boy, did that make a difference. 

I think these are opportunities for us to learn, about ourselves, our disease and how to handle it from day to day.  Most days, I don't feel shame of any kind...but yes, it does sometimes show up.

This seems to me an opportunity to share a video about Ben Underwood, not a cancer patient but incredibly powerful none the less.  I have met and spoken with his mom on many occaisions (after Ben passed)...she is as amazing in person as she is in the video!  She once said to me "I share my pain and anger AND JOY with god, the rest of this world only sees the joy."

http://www.youtube.com/watch?v=G1QaCeosUmw

Hugs,

Linda

I saw it as embarrassment, but it was the same feelings.  I really felt it when I was having my reconstruction surgeries and had to ask for rides.  I was always the strong one helping others and really didn't know how to ask for help, and felt so weak for having to ask.  When I lost my condo and went looking for an apartment and couldn't even rent one with out a co-signer.  Here I was 53 years old, always had great credit, had a well paying job, have 2 BA's and was being treated like I was worthless.  I felt so ashamed that I was not better prepared for a catastropic illness! Yet I went back to school, worked through my first bout of cancer, bought my own home, all as a single mom.

The weight gain has been another topic of embarrassment.  It has bounced up and down since starting tamoxifen, then it got worse when steroids were added.... then I lose, go on another med and gain.  There have been so many times when I just wanted to run and hide from it all. 

Now that I am seasoned at all of this, I see it differently.  I know that I did nothing to cause it, however, when I was down physically, then mentally, there were (and sometimes still are) times when even though I knew this, I still felt that somehow I should have been able to do things differently so that I didn't get cancer!  Amazing how our minds work.  I think a lot of those feelings came from fear of the unknown. Would I ever get well?  Would I be alone for the rest of my life?  What if I couldn't go back to work?  All of this did come into play, and I am still living, mostly content with my life and my decisions, but still from time to time the shame/embarrassment issues come up! 

I am so glad that you brought this up.  I think a lot of us have felt this way but don't always know how to voice it, because we know that it is irrational but we still feel it.  I think being single can be really hard while going through this because we don't have that partner that we trust enough to share some of these feelings with! 

Love you Ayse,

Carol

as it's personal to each of us. I feel part of the way one sees this diagnosis and reacts to it has a lot to do with one's personality. For me, the "shame" was more like "Why me?" "What did I do wrong?". Like Tracy, my mind wandered to questions about what I ate, drank, exposures to anything harmful...that can be nerve wracking! I felt "singled out" and I wasn't comfortable with that. I also have never liked the spotlight so, needless to say, working in a huge corporation where news travels through the grapevine at lightening speed, I had to keep my chin up and walk through the halls looking brave. There were times I felt I was wearing the scarlet letter which brought out a sense of shame as that was my reactive feelings to stares and side steps. But having to experience something like that just makes you stronger. I was embraced by some, avoided by others. I saw people come out of the woodwork and bring me food for my freezer. I was touched to the core many times. I chose to roll out of bed and go to work to cling on to normalcy or I would have lost it. Now it seems I have come to befriend several women since my diagnosis who also have been diagnosed where I work.

I like your question. It's so interesting how one feels. I would tell my sister that I had never felt so many emotions hit me all at once. Emotions you didn't even know you had. Cancer does that to you.

Thank you for asking this.

Hugs,

Sylvia

aysemari said:

Many facets to shame

Doris,

 

I can see your point. Let me explain a little better what I felt. First ot all I really wasn't even 

aware of it at the time. It really wasn't until I saw the post and the two words together like that

that something clicked. And I realized that I had felt ashamed. 

 

One major area for my shame was that I had no one by my side. It made me feel unwanted,

unloved. No family, no boyfriend or even a very close friend. I had just moved to AZ and my

one friend and business partner moved away but I decided to stay on. I had 2 jobs and full time

school, so really not a lot of time to build relationships. Sure I knew people, I had even just started

dating a really nice guy. But the first reaction for most people was fear and then flight. And I can't

say I blamed them. They barely knew me, and maybe they were afraid that I would need more than

they can give me. Eventually they did start coming around but by then I had gotten a handle on my

situation and honestly did not need the stress of trying to handle their emotions. I still met with them

but never asked for anything unless I absolutely had to. I remember the dreaded question at the

hospital, in the infusion room, after a bad reaction to chemo - do you have someone to accompany

you home? No, just me or No, just me and a taxi. Except that time when MissRenee drove me to

my mastectomy, it really mant the world to me. 

 

Another time I felt shame, was when I had to go to my work place and I had gained 20 pounds, just

like that. I walked every morning, even bought a Nordic track, since I was not a good candidate for

the gym with my compromised immune system. In addition I did some gentle yoga. Yet there I was

bold, chunky and yeah the flat chest. I knew everyone was staring and no one approached me or said

something. It made me feel very isolated and yes ashamed.

 

Being a very independent and strong woman, it was very hard to ask for help. I think I also felt ashamed

to ask for help. It made me feel weak. It was all a learning curve for me. And I learned a lot about myself

and people's reactions and limitations, how to accept and deal with them. 

 

Everyone's experience is different based on their situation. Family status, financial status - all affects a 

person's experience going through treatment. This boad has helped me so much to understand my

emotions and how to deal with my side effects. It really helped me from going off the deep end. I have

some amazing ladied to look up to and learn from and I tip my hat to you amazing ladies who taught me

to find the courage and gave me support while I was finding my way. Love you ladies, you know it, don't you?

 

Hugs,

Ayse

Dear Ayse,

I have read the responses and the word "shame" has different meaning to each person who posted.  To me the word shame means humiliation.

Mine was in retrospect of all the women who suffered and died in silence due to societies stigma on the words breast and cancer.  My aunt diagnosed in 1959, went through the awful treatments of her time and then pronounced "cured" at the five year mark.  Six months later, in June 1964, an x-ray revealed that her cancer had spread to her lungs.  She died in September of that year.   No one ever stated her cancer was that of the breast but only mentioned that cancer was in her lungs.  Any conversation on cancer was whispered about in back kitchens with only close female relatives.  There were no books to enlightened and certainly no support groups to help these women and men in those years before Komen made BC, a very public word.

I was elated in 1974 when Betty Ford, First Lady spoke publicly of her breast cancer diagnose.  To many she will be associated with alcohol and prescription drug additions.  For me it will always be her bravery in talking about breast cancer.  Marking the beginning of taking the centuries of shame out of the mixture.

There is for me no personal blame for breast cancer, as no one knows the cause of this disease.  One renegade cells, forgets to die off and then begins to produce similar cells.  The immune systems usually corrects the problem, so many times in the course of our life.  One day, for reasons yet to be understood, it doesn't.   The cells build up to be a tumor and for those like me, tumors that spread to distant organs.  I find no blame in this concept.  It isn't my fault and therefore, I have never had feelings of shame.

I was divorced, with 2 sons at the time of my diagnosed and the sole provider.  I needed health insurance and therefore I had to work during treatments.  I did work during my treatments in '99 and always returned asap back to my job after surgeries, biopsies and etc.   It wasn't because my employer expected me to take as little time as possible.  I was told to take as long as I needed.  This has always been my way to deal with cancer or my other medical issues.  Move on. 

Did gain weight during chemo and while taking Tamoxifen but I knew that these were side effects of the drugs.  Tamoxifen was used for 4 years until my 1st recurrence.  When indeed, the experience was behind me, it took me 4 months to loose the weight to where I was pre-cancer and in no time was enjoying life again.  I did have two ribs that had mets but Arimidex was keeping me NED.

Our experiences are so different and it does seem that I am the odd woman out.   I do feel badly for those who feel or felt shame. 

Doris

aysemari said:

feisty as feisty can be Doris- love it

we are alike... when feisty left,shame started to pop by

You know I thought about this again today and partial answered in Camul/aka Carol post on Grieving.

I work in a school system.  The first student who I knew had cancer was an 18 year old young lady.  She had been accepted in a program to spend a year abroad before going to the college of her choice.  She was a very gifted young lady.  She came down with a very aggressive brain tumor and was dead in 9 months.  I had never known anyone who died so quickly. She did everything that was offered to her by the Cancer Center to no avail.  The next was a young woman who asked for help on the computer.  As I was checking out the wires, I noticed she had an arm/hand prosthesis.  She was a new student and didn't stay long with us.  I never knew how it happened.   I did think how much work she had to do in order to have her arm and hand functioning.  Especially versus my breast which was just removed.  She was between my diagnose and my first recurrence.

The one that happen with my first recurrence was a young man who had sarcoma.  He had cadaver bone replacing his cancerous one.  We talked a lot because I told him that I just had a recurrence blah, blah, blah.  He had one infection after another and long hospital stay each time.  Eventually, he gave up and had the leg amputated.  He went through chemo but can't remember if he had radiation.  Another student who I thought was so brave had lymphoma and went through chemo, radiation, loosing his hair and all.  He rarely missed a day of school.

It is hard when you see these sort of struggles to ever feel sorry for oneself.  These young people were just beginning life...

There was one incident that I found funny.  I was going through radiation.  I was having lunch with my co-workers and there was a mandatory meeting that everyone needed to attend after work that day.  It was one of the best days of the spring and without exception there was moaning, gripping, grousing about having to be inside and instead of being outside on such a gorgeous day.  I had radiation treatment to go to and was excused.  So I said, "anyone want to trade places with me?".  Silence!  Everyone became busy looking at their lunch.  One, looked at me and said, "point well made".  I said, I "thought so" and proceeded to change the subject.

I guess we all have different experiences that make us who we are and how we react.  I am a bit of a bull dog.  Are you?

Doris

This is powerful, Ayse.I have to chew on it for a while.  Hope to get back to you with an answer.