Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: Oct 20, 2007 08:50PM - edited Oct 20, 2007 08:50PM by Watson
I have been a regular poster on breastcancer.org for over 2 years and this is my first time to start a topic.
It seems that on a lot of threads lately, the original question gets sidelined by the discussion of attitude. So I thought maybe if we had a place to discuss that specific issue, it would alieve that problem. Plus I would like to hear everyone else's insight as to attitude.
So I'll go first:
I absolutely hate it when people tell me I've done so well since diagnosis because of my positive attitude. Then they follow it up with random percentage comments: "A positive attutide is half the battle." Or "90% of the battle is your positive attitude"
I really want to hurt these people. lol The truth is, I DO have a positive attitude. I always have and I always will. I don't behave this way because I think it will cure my disease; I just don't see how being grouchy or woe is me will help anything. That's just drama that sucks energy.
I do have hope for myself and others. And I say that as a realist, not as a Pollyanna rah rah cheerleader type. I feel bad for those who are doom and gloomers. If you have no hope, you might as well have lost the battle already.
We're here now, make the best of it. That goes for everyone on this site from Stage 0's to Stage 4's.
Wow, did I ever ramble or what! I guess not starting a topic for the last 2.5 years built up! lol I hope this all makes sense and I didn't step on anyone's toes.
Posts 1 - 30 (51 total)
Oct 20, 2007 11:22PM Traci-----TripNeg wrote:
I like this thread. Just three days ago, the adult daughter of my ex-husband sent me an email a mile long telling me how stupid I was for #1 having a double mast even though the BC was only in one and #2 for having a preventitive hysterectomy.
See, her attitude and opinion is... doctors are businessmen & women and butchers... and are in cahoots (sp?) with the big pharma co's and all of it....scientific medicine.... is one great big giant scam.
She thinks the "all natural oils" going around can cure cancer and that I'm a lunatic for mutilating my body.
How's that for attitude? As far as I'm concerned, she needs to keep her opinions and her attitudes to herself. The next day, she sent another mile long email to everybody in her mailbox saying how "heavy hearted" she was over my stupidity. Of course, she didn't send that one to me....but, I had several people send it to me letting me know it was out there.
Thank you for the opportunity to vent. I'm sorry if I offended anyone by posting this.
Am I off subject????
ps.....I am perplexed when people say how good my attitude is. My attitude has never been worse! Well, I guess I do keep that on the inside....no reason to make anyone else feel lousy!!
Oct 20, 2007 11:37PM Traci-----TripNeg wrote:
I know!!!! I started to write a email back saying "well, if they do cure cancer, then why don't the makers of this oil 'give it away for free' to 1000 cancer patients...let them be cured, spread the word and then they (the oil makers) can charge $1,000 per 1/2 ounce instead of $100. Grrrrrrrrr
I didn't though. I sent a reply to her saying "Don't worry, I will never, ever.....send you another email regarding my cancer."
Oct 20, 2007 11:52PM PineHouse wrote:
I don't know about you, but if I'm getting that kind of comment from people I wouldn't have a "positive" attitude.
Well, I'm generally "positive" and cheerful. And I don't mind people telling me I have to be positive or commenting how positive I am. But the truth is, nobody can be positive all the time. I'm sure all of us go through ups and downs.
I do though, believe that being positive (happy, hopeful, thankful, content - not just appear smiling on the outside) beats being negative (fearful, angry, hopeless) in terms of keeping the little immune system we still have left. So yes I do help myself out when I'm feeling the bad stuff, such as anxiety when awaiting my CT scan result... I try not to think about it by getting busy with projects, friends/family..
Oct 21, 2007 12:03AM twinmom99 wrote:
It drives me a little crazy too when people comment on attitude -- yes I agree a good attitude is always good in any situation, but it doesn't cure cancer!
A good friend of my father recently said to me that my chances of a reoccurence would depend on my mental state, as in "it's 99% mental"...oh yeah, then why do people who have had easy going, low stress lives get cancer? Why do children? Did we think ourselves to cancer? It makes it seem like I somehow caused my cancer. Oh brother!
Oct 21, 2007 12:23AM - edited Oct 21, 2007 12:29AM by Watson
lol, yet another percentage stat. I love/hate those.
I've come to the decision that when people say the things they do it's partly out of fear. If they think it's attitude, carrot juice (my sister in law's insistent on that one), yoga, peach pits, etc that keep it away then they can save themselves from it and never get it.
But as far as our own attitudes, a lot of us seem to be on the same page. It is what it is. Deal with it. If someone logs on looking for hope, I give it to them. I don't think there is any type of BC that everyone succumbs to. Knowing that there are women out there that beat it and live long happy lives let's me believe it could be me as well. I see it as a cosmic coin toss. I lost the first toss when I was dx. I won the next won when chemo didn't even make me nauseas. I'm hoping to keep winning the flips.
Does being triple neg suck? Yes. Does being er/pr positive suck? Yes, too! Saying that being triple neg is all doomsday is just not correct. Many of the women on the mets board have er/pr + in their bio. Not that I look to that for comfort but I think it reflects this is all a coin toss.
It is a beautiful day here in the Houston area. I am going to get in my new VW bug convertible and drive around and get some wind therapy.
Appreciate the good moments is all I'm saying.
Oct 21, 2007 01:57AM AlaskaDeb wrote:
Thank you for starting this thread. This is one of my all time pet peeves! I too am a generally positive person, and I have used laughter and prayer to help me stay positive most of the time. That does not mean that I have not spent many a night at 2:00am sitting in my bed, unable to sleep, sure I was going to be dead by the end of the week.
When all of this started almost 2 years ago I felt that I had to put my brave face on all the time. I didn't want to seem sad or scared in public. Faking all that cheer used up WAY too much energy. I decided after a very short time to be honest when people asked how I was doing. If I was having a bad day I said so. It was SUCH a relief!
My goal was to try and think positively as much as I could, but if I needed a "pity party" day, I took one.
I think it is huge load of guilt to pile on someone undergoing cancer treatment to say "You have to stay positive or you won't get healthy". I defy anyone to stay 100% positive when things are going great in their lives, let alone when faced with a cancer diagnosis.
As much as the "you have such a positive attitude" comments bother me, don't even get me started on "you are so brave"!
Oct 21, 2007 02:33AM Boo46 wrote:
Oh yeah Deb the "you are so brave comment" drives me nuts. I actually lost it one time after this was said to me and my comment was something like:" Brave!!! Are you nuts? Do you think I have any choice in this matter other then go thru treatment or die? I have been dragged through every step of this mess kicking and screaming and crying!!! Brave has absolutely nothing to do with it!!!"
Well as you can imagine I made no friends with that little tirade. I did apologize and have learned to take a deep breath and remind myself that anyone not dealing with a cancer DX doesn't really understand. Till this day though I still feel a little giggle when I remember the look on her face.LOL
Oct 21, 2007 03:32AM Watson wrote:
Have you guys had anyone say "I could never do that" um, hello.... look at the alternative. My idiot neighbor said TO MY BALD face "I would rather die than have to lose my hair" I told her that her children must be happy to know that she would choose her frizzy, unruly hair over them. Talk about a look!
Having a positive attitude does not mean I don't have scan-ic attacks. I still feel myself up like a bad prom date about 5 times a day to see if I feel anything! lol
Everyone has the right to their feelings (the emotional ones not just the boobie ones).
And yes, my wind therapy was fabulous.
Oct 21, 2007 03:44AM AlaskaDeb wrote:
I laughed so hard at your "feeling yourself up" comment. I don't have any boobs to feel up anymore, but I have been poking my poor sore armpit so much the past 2 weeks that I have a BRUISE! now I can't tell if I'm sore from some stray node that is swollen, or because I can't keep my hands off the sore spot!
Oct 21, 2007 03:58AM CaNatalie wrote:
First of all...this thread rocks! Thank you for starting this Watson. It is amazing how many of the comments on here echo my exact thoughts and feelings. It is annoying how many people told me when I first was dx that I had to keep a positive attitude. As if I go downhill it's my own fault for not having the "right" attitude. I recently read somewhere (I can't remember where) that cancer does change who you are, it amplifies the person you already are. I still haven't decided how much I agree with that, but it is definitely an interesting thought to kick around. I don't know what the future holds, but I know I am gonna enjoy it and make the most of it regardless of what comes my way. It's a relief to know I can have my moments and move on. It doesn't define my general attitude or my prognosis.
Oct 21, 2007 04:02AM honeygirl wrote:
I love this thread! Boo46 , you are so right. We have no choice. Why don't they get that. I have a person at work , who is always saying "you have to be positive to get well" is she for real!?! So if I die will she be saying , "she should of been more positive!?! I am a positive person. I guess she just has to keep saying this for her own reasoning. I don't know.
Watson , yes I had someone say , I don't know how you can go through this, I could never do this , yea , you can and would if you had bc!!! I hate bc, but having gone through it , I know what I would NOT say to someone that is going through it . Hugs.
Oct 21, 2007 09:03AM ravdeb wrote:
Congrats on starting a new thread after 2 and a half years! And your signature is one that I think we'd all like to copy from you.
Positive thinking is not what it is cracked up to be and others put a lot of stress on us when they make comments about the correlation between positive thinking and our cancer growing or not.
And here's my opinion...there are these articles I read that say that pain and other things are in our brain..not in our mind and imaginary, but the signals come from our brains and are transferred to the problem area..like a bad back. I wonder if this has anything to do with pain thresholds. I mean..some people with herniated disks and sciatica (I have both) are in bed and can't move and others, like me, can walk the beach daily and have what I term "tolerable pain without meds".
If it's because for some reason I transfer (without control of this) thought waves from my brain to my back so that my pain will not be as bad as somebody else's, then I'm guessing that the brain can do the same thing for cancer cells. But, I'm not transferring this on purpose. So, I would then think that we cannot transfer our positive feelings (as opposed to positive thoughts which could just be words like..I'm okay or I know I'm okay or I'm thinking positively) purposely from our brains to our cancer cells as we cannot contol all the mechanisms up there in our heads.
Are you all following me?
When I was first diagnosed, a psychologist friend of mine came to visit me and told me clearly that stress does not cause cancer. I believe that it's a mixture of many things..environment,hormones,genetics and DNA. And I suppose, within that all comes stress because with our body make-up as well as environment we all have certain amounts of stress, so that would just be one element with all the rest. And that's how I see positive and negative feelings...it's just one thing among many others and it will NOT cause cancer or make it worse or better or whatever.
Oct 21, 2007 04:48PM - edited Oct 21, 2007 04:51PM by Watson
Maybe I should have piped up earlier! lol
Ravdeb, positive thinking may have something to do with how you DEAL with all this. I don't think it cures you by any means. Hell I would have just smiled more and not done chemo! lol
I KNOW that negative thinking impacts your coping abilities. There are so many women who get dx and then immediately take a leave from work because they just KNOW they are going to be too sick to cope.
I always say, why don't you try it first and see how it goes? I worked everyday in an office during chemo and rads. I figured if I sat around the house feeling 'sick' then I would be. I understand that some women still do get really sick on chemo and can't function. But I think many still have the preconceived idea that it's all Lifetime Movie of the Week chemo. lol Of course the reality isn't as easy as Soap Opera chemo, but somewhere in between. lol
Off to spend the day with my daughter at college. Gig 'em Aggies.
My future's so bright, I gotta wear shades!
Oct 22, 2007 10:14AM ravdeb wrote:
Yes, Watson..I agree with you..not being negative about everything or just assuming it something will go wrong, you won't feel well, etc..does not help when you need to deal with things.
This is totally true! It's good to be optimistic and not look into what COULD happen but how you feel at the moment (particularly in relation to chemo and its side effects).
And of course...sometimes the body takes over anyway despite what we do.
For example...When I started my chemo I was positive...really, really positive, that I would fly through it. My girlfriend had flown through AC and Taxol with no problems and so I was confident I would do the same. A friend of mine gave me a pretty little bag before I began treatments and said I could hang it in my hospital room. HUH? She thought I did treatments as an in-patient. I told her this wasn't the case and that I had no plans of being hospitalized. My plans were to get through the treatments and fly to the States for my niece's wedding. It was going to be close so I had no time to be sick.
Well, I was determined. And one day I got a fever. It freaked me a bit but my onc nurse said to just watch it and it would go away with Tylenol. But it didn't go away (and I believed it would as I had already said that I was not going to have any complications) but instead I got deathly ill.
My point is that I truly believed that I would not be sick. I had been out with friends a week before that and felt whoozy and had to sit down but I chalked that up to not drinking enough. When we were sitting in a restaurant, I had to run to the bathroom thinking I was going to be sick, but nothing happened. I decided I was just over-tired.
But I had a bacterial infection and was hospitalized for a month.
My brain waves apparently were not sending the right messages to the rest of my body because even in the hospital I was positive I was okay and was angry with the doctors for keeping me there and I had to miss my last treatment of AC.
I had really bad pains but I was angry with them because I kept telling them that I was okay and I wanted my chemo treatment.
Later I learned I could have died from that infection I had. But the thing is that I didn't believe that. Denial? I don't know. I was taking care of the old ladies in my room who needed help in the middle of the night. I could barely move but I was helping thme. I was totally positive in my thoughts. I guess that's what brought out my inner strength to deal with it all but it did not change the physical problem.
I have witnesses who can say that I was positive in my thinking.
Now..when I left the hospital I was to start Taxol. After 4 weeks in the hospital, my energy had dropped to zero (4 weeks of IV antibiotics, too) and I looked bad and was in lots of pain. My onc would not give me the Taxol until I looked better. That was a Sunday. She said I had til Thurs. I was determined and on Thurs she said I looked like a different person.
Oct 22, 2007 08:44PM FloridaLady wrote:
I think attitude is important. Not that we all don't have bad days and sometime really bad days. But it's where we spend must of our time that is important. Read on depression and the physical problems it can cause. Certain "long term" emotional issues can deplete the immnue system. I do believe there is a link between mind and body. Does it cure cancer no. Can it help you have a life while having cancer I think so.
I know this is really horrible to think you have to do this but...After going to multiple cancer centers I have found that you must sale your attitude to each doctor. If you believe in a cure..they will work harder to find you one.
I was told I had 3 to 6 mths to live two years ago. I had on going treatment the whole 24 mths and bad news the whole time. One step forward two back. I will find out in Dec if I'm neds after 51 nodes positive and bc that spread to skin. It look's possible... no matter how negative my family and doctors have been the entire journey. I choose to live in hope. (at least 80% of the time any way)
Oct 22, 2007 10:07PM Traci-----TripNeg wrote:
You go FloridaLady! That's what I call a good attitude!
Watson.............Gig 'em Aggies!!!!!!!!!!!! I'm an Aggie's sister and an Aggie's aunt!!
Oct 23, 2007 07:45AM LisaSDCA wrote:
There's a "new" study getting some press now by Coyne et al that purports to show that 'attitude can't overcome cancer'. While it is wonderful that this concept is getting some print, it's unfortunate that it is this poor science. As David Spiegel, MD, Professor, School of Medicine, Stanford puts it
Coyne et al's study adds little to our understanding of emotions and cancer. Coping well with cancer never was about "positive thinking," which is really just wishful thinking, pop psychology notwithstanding. Dealing well with real anger, fear, sadness, and other emotions that inevitably accompany cancer can help people live better with the disease. Good social support, including group support, helps people with cancer to do this and counter their frequent sense of social isolation. Clinical depression makes you feel terrible about yourself, drains energy, impairs the ability to get the best medical treatment, and in many studies is associated with shorter survival with cancer and heart disease. Coyne et al. picked four of twenty-seven items from a questionnaire that only 62% of the sample had filled out and found that they did not predict survival. That is hardly surprising: small measure, big biased sample, no results. Big deal. Absence of proof is not proof of absence, especially in a study this badly designed.
But they'll still report it as Big News.
Oct 23, 2007 04:11PM badboob67 wrote:
I hate the "positive attitude" comments and advice too. I think people comment on it because it makes THEM more comfortable to be around us. Shoot...ANYONE with a negative attitude, no matter what their health status is, is someone I don't want to spend time with! A positive attitude does help in some ways, though. I truly feel that some doctors and nurses are more apt to be personally invested in the outcome of their "positive" patients than their "negative" ones. I think that sometimes, that extra attentiveness can translate to more time spent by doctors thinking about treatments, etc. I have a generally positive attitude, but I didn't acquire it the day the doctor said, "It's cancer." If a positive attitude truly had an effect on cancer, then those of us who have always been "positive" people wouldn't have gotten it in the first place.
I also have a problem with people telling me, "You look so good!" I guess they expect me to look like I am at death's door. I have gained so much weight since my diagnosis and am always tired. I KNOW it shows. I don't think I look that good!
The people who insist we have a positive attitude to "beat" cancer are just plain ignorant. The cancer, chemos, radiation, drugs, etc. don't give a hoot what our attitude is! I find these to be the same people who are ready with their own personal "brush with cancer" as in: "My aunt/grandma/mother/sister/cousin/coworker/next-door neighbor had cancer of the xyz and they <insert horrific side effect or death story here>." When people at my church found out I was going to have rads to my spinal mets, a man that has never spoken to my husband came up to him and said, "My mom had radiation. Her skin blistered and came off in sheets. Good luck." HONESTLY! People just don't think before they speak!!
Oct 26, 2007 01:49AM Shirlann wrote:
BALONEY!!! Attitude and $4 will get you a cup of coffee at Starbucks! I have seen so many brave, active, smiley, generous, giving, people die of cancer, that is just crazy. Maybe people think they are making you feel better.
Attitude had NOTHING to do with cancer. Sure, feeling nothing is better, I guess, because stress sure is hard on the immune system. But the face people see out "front" is not the real face of cancer. Ther is NO ONE who does not go through a terrible time with grief, money worries, children worries, husband/wife worries, job worries, it is endless. It is a horrible experience and the only thing we get out of it is this board.
Oct 26, 2007 07:31AM Sadie-Rose wrote:
Everyone has addressed this topic so well. My feelings have been expressed in each of your stories.
I might add some of my memories...
I can remember my friends wanting to celebrate with me when I finished my treatments. I didn't feel done though. I found it hard to explain it to them. I felt like I was in college and had finished a class, but I hadn't graduated yet. After treatment ended is when I felt the most isolated and frightened.
It also makes me grind my teeth when someone says cancer is a gift. No more gifts please! I do try to focus on the richness that opened up during this journey. I take in everything now. On the way to work I pause to look at the trees, the sky, and the flowers.
I feel grateful to be going to work and doing work I like.
I reach out to others more now. I had been very private before cancer so I guess I can say the journey helped me open up.
I agree with everyone who said we to have our emotions. Cocooning is what I call it when I just want to stay home and have time alone. A good day wrapped in a blanket can do wonders for the spirit.
I do chose who I tell the hard stuff to. I have a great counselor to talk to.
This is off the topic a bit, but I watched Nova the other night and they talked about the mind body connection between heart disease and emotions. They said the heart can actually change shape, drooping or ballooning on one side when the patient had experienced a trauma or hardship. (The idea of the broken heart.) They said even later when the patient's thoughts went to the trauma, the heart slowed down. Interesting, isn't it?
I think I jumped around a bit. It's bed time. I hope I made a little sense.
Good Night All,
Nov 1, 2007 11:44PM rumoret wrote:
I always had a positive attitude.....and I was the sister who got breast cancer. I have 5 sisters and at least 4 of them could do with some attitude adjustments......and they do not have breast cancer.......YET.
I know we have all asked ourselves, "Why me?" My own sisters think, "Why Terry.....and not one of the more destructive and negative sisters?" Sometimes I wish a good scare would come and visit their house so they could really see how it feels to be dealing with breast cancer. I do not wish them any harm.....but sometimes their attitude really pisses me off! I watch how destructive they are with their health.......drinking....smoking....overeating..etc............and they just keep on ticking. When I got breast cancer and none of them did.........let me say it was a big shock. I was the last person they thought would get it in our family. Even though I have been dealing with this for just over 1 year.......I am amazed how destructive they still are with their lives. It just does not seem FAIR! I hate breast cancer and all of the other chronic diseases that touches so many wonderful people!
I needed to speak my feelings on this.....hope everyone understand that I wish know one would ever have to deal with any kind of chronic illness........but I am just feeling a little hormonal at the moment, and I am menopausal....you would think I was premenstrual or something!
Nov 2, 2007 12:05AM itslisalouwho wrote:
It's ok Terry. It's honest.
I may get some bad feedback about what I'm getting ready to say. I hope not, but I may.
I keep thinking "why me"? I mean, I am SUCH a girly girl. :) And the vainest person in all the land! :)
Not that non-shallow people should get cancer. Or women that don't get into fashion and make-up and shoes and jewels.
NO ONE should ever have to go through this.
But, that's one of the silly thoughts that enters my mind at times.
Nov 2, 2007 12:14AM itslisalouwho wrote:
Yes, you certainly MUST keep them! :)
And cancer does suck. Big Pickles and Big $#@#. :)
My icon doesn't say Jesus is Lord, so I can say $#@#. haha (but, I am a Christian.....I just like typing cartoon curse words).
Nov 7, 2007 02:20AM Shirlann wrote:
Oh yes, it gets kinda curiouser and curioser with BC as the years roll by. I did not like getting it, I did not like treating it, and the only good thing that came from it is the women on this site. I have some dear, close friends who mean the world to me.
That's it, but that is a lot, hugs, Shirlann