After 3 years...am I normal?

rubyredslippers

Hello all

Had my annual mammo and u/s this week and had a chat to the BCN that works there. I told her (it's been 3 years since my dx - I was 38 years old then) that I still think about BC everyday - not to say that everyday I worry about it, but it's always there, in the back of my mind. 

She said "You've let it consume you". I said, no, Im not still fretting and worrying, but it's always there". She said that most women "move on".

Ok, am I normal? I cant imagine going thru a BC diagnosis, chemo and rads, the trauma and depression that goes with it all, and moving on after three years and not thinking about it everyday. How does everyone else feel?

Fearless_One

Almost 2 years for me, and I think about it every day.   Even had a BLMX (AFTER my lumpectomy), I was so worried.   I worry about mets, even though I am stage II.

rubyredslippers

I feel that i have to add, this BCN hasnt had breast cancer herself...just a self proclaimed expert on how we should feel and think. I akways feel so resentful and angry afterwards about things she has said to me. I kind of feel as though my feelings and experience with BC are being made light of by her...but is this normal for someone in her position - is she just trying to help me to feel happier and not worry so much, or is she arrogant?

Anonymous

rubyredslipper,

For one, I just don't like the word "normal."  And, I do understand how you feel.  One of the women posting on this board has a tagline about that line from the song by The Eagles, Hotel California, "you can check out, but you can never leave."   Think that's especially true when we go in for annual check ups, tests.  HECK, we know what they're checking for!!!!

PLEASE, PLEASE don't let anyone try to tell you what is "right" for you.  It's just a difficlut cancer to live with, even tho the cancer is WE HOPE, gone, I think many of us look over our shoulder to see if it's approaching?  I hope you can find a way to live most comfortably with your own situation.

One thing, I think of, is you are so young - have you connected with the Young Survival Coalition. There might be some women who live near you.  My experience is it's talking with other women who have had bc, that's made it easiest for me to understand myself, and live with the most ease I can.   

sewingnut

I think when you look in the mirror everyday any scar, be it from lumpectomy, mastectomy or reconstruction, reminds you that you have breast cancer.  It is a "consuming" disease.  Initial diagnosis is mentally consuming.  Treatment and reconstruction is time consuming.  The trick is how to manage to live your life with breast cancer.  That BCN needs to be slapped upside the head with the wisdom book. 

2Nan

Hi ruby red slippers,, I really don't think most of the professional world who has not had BC know how a person who has had it actually feels. They look at it from a medical viewpoint and the clinical aspects.  They are desensitized to the real aspects of the disease and how as humans we deal with it emotionally.  It is a devastating experience to say the least.  Women are very strong in general and tend to put things on the back shelf, which is why we always have that little thought in the back of our heads.  I am nine months post op and still analize every little bump, pain, and etc.  You are very normal in the way you feel.  It's not that we let it consume us as the BCN said it is that we have had a life changing event happen and we don't want it to happen again.  I really think that people mean well but they don't really see the big picture.  You hang in there and just be good to yourself, don't hang on to the words of someone who hasn't experienced what you have and above all, take one day at a time. I have found that every day has to be a new day. The thing I have found that comforts me is that Life itself is too short to worry about, so I am gonna LIVE mine as happily as I can. I hope I am making sense. Much comfort to you and stay strong, because you are.

MRDRN

Hi there...as a matter of fact Lynn Shochley, from Hopkins who is a nurse , a survivor, but works as a breast cancer center director says the same thing, I feel it was a bit arrogate at first when she said in an online video the this dx should not be given any more "floor time" than it deserves! But as everyone has individual care plans, I feel some people can handle being an "advocate" for the cause and thus helping themselves and others. This is why bc.org is so great because those os us CHOOSE to still be involved can come here and keep a breast on the latest research, get support, give support and absolutely yes you are Normal! I like to read a lot about it and as I learn and become informed it decreases my anxiety. It also validates my feelings when I have symptoms and others do too. I am "only" stage one but even if I went to the hyster sister site this site covers everything which is good to be informed about. If people have a problem with your handling of YOUR journey.... That is not your problem. Take what you want from healthcare providers and leave the rest! The nurse has your best interest at heart but should not be judgemental. I mentioned stuff from this board once to my RN,NP and her resonse ? "you need to get off that board". Oh really? I thought and smiled. Perhaps if we had more teaching in the office then I would not need it.This is a very good topic. Another nurse who was there when I was dx'd actually referred be to this board and said it will help. I have the time to be my own best advocate and I want to know and learn. Good for you for wanting the same! That said we do have to try obviously and keep the "worry" to a minimum. Cheers!

Monty

I totally agree with "sewingnut" - how can someone who hasn't been where we have all been be able to dictate how we should feel.  For me I am 3 years out from diagnosis, and yes like you, rubyred, BC enters my head at some point everyday - how can it not when I see the scars in the mirror or put the foob in my bra on a morning?  I do wonder when it will return, rather than if - it's like there's something in my head telling me it will comeback, I try to ignore it but ......  Maybe this is a defence mechanism so that I won't be as surprised 2nd time around, who knows?

Next time you see that BCN slap her upside the head for me too.  I am very fortunate that my BCN, ONC, Chemo Nurse etc are all very supportive and do seem to understand that this is not a disease you can forget you ever had unlike flu and the like - the memory of it is there for life.

rubyredslippers

Thanks everyone. I really dont think I need to talk to this woman again, as she only ever seems to fill me with resentment and anger at how she talks to me. I also refused Tamoxifen. She queried this again this week, and said that she would view Tamoxifen as her "insurance policy". I wish I'd said "so when you were diagosed at 38 with BC, you agreed to take Tamoxifen?" How dare she question my decision that I put a great deal of thought into and did what I believed and still believe is the right choice for me? This decision caused me a great deal of angst and trauma...what does she think she is acheiving now by trying to make me feel like I havent taken out insurance against BC by not taking Tamoxifen? Shouldnt she be supporting me in my decision, not trying to tell me what to do?

Anonymous

Just wanted to pop in again, to suggest a book I've just started reading: AntiCancer:A new Way of Life by David Servan-Schreiber.  It's been out for awhile, so I'm late ( stubborn) to the "party."  I jsut got tired of reading about "what to do."

BUT, and it's a big but,  finding this to be a very valuable experience, already doing a lot of what he suggests, which is comforting, and the author had Brain cancer, a relapse, and is fine now.

wrsmith2x

Being almost 4 years out I tend to go through life not thinking about having had Breast cancer every minute of every day.  Time passes between those thoughts more and more as the years go by.  However, I recently ran across a blog post that I just loved so I thought I would share it.  I hope Em doesn't mind.

http://emilymcarthur.blogspot.com/2010/09/can-you-ever-move-on-from-having-cancer.html

rubyredslippers

Hi wrsmith2x. I agree with you that as the years pass the time passes more between those thoughts. I dont think about BC every minute of the day...but not a day goes by that it's not in the back of my mind. Do you feel that way?

DebRox

I believe it is normal to think about it.  How could one not?  It is an emotionally devastating disease that f's with your mind.

I spoke with my dentist a month ago who is 3 years out of his prostate dx and he still thinks about it daily, not every waking minute, but it still creeps into his mind. 

I am nearly finished chemo - one more this Tuesday, then onto the next stage of tx.  I feel as though I will be looking over my shoulder the rest of my life, as though hunted by a shadow.  I can only hope that with time, cancer will not dominate my thoughts.

dsub

I too feel like i'm waiting on the other shoe to drop, so to speak. diagnoised with vulva cancer nov. '07, then breast cancer feb. '08. I have "Shehan's Syndrome", Immune disorder, and I'm terrified at times that it's back, or is it going to suprise me in ten  years when I least expect it. YOU'RE NORMAL TO ME. It is in my mind back there everyday. A new sympton freaks me out at first then i calm down. I think the vulva cancer is the scariest to me, 50% of coming back. but either has caused me to loose what little brain cells I had. I come here to read posts when i'm scared to calm me down. Thanks Ladies.

Anonymous

I don't care what training someone has had, or how big of an advocate someone is, if you personally have not had cancer you can never absolutely truly understand how this feels.  There are very few of us that this does not change forever.  A quote, found here on BCO under information about dealing with the fear of recurrence, sums it up for me-

"Living with the fear of breast cancer is having a whale move into your living room. One day, it just appears and is always in the way. Over time, the whale can get smaller, but it never quite goes away. Maybe, sometimes, it gets down to the size of a magazine rack and once in a while you bump into it. Sometimes, it swells up in your face again, like when you have a mammogram and they call you back for extra views."
-Barbara

It doesn't consume me but it's there.  It's like a big C on my forehead that only I can see. I think most of us wish we could "move on" as your BCN put it, a lot of us pretend to but not sure how many of us are actually successful at it.