THEY HAVE NO IDEA!!

sorry it posted twice. Guess that's my "new normal" LOL

Most all of us have experienced the very same feelings.  It seems to get worse actually, IMO, after the rush of dx, tx, recon.  The most misunderstood is why we don't just "move on".  I believe my dh finally caught on when his prostate tests began going up after his first major surgery--removal of prostate, and he did all the same jumping thru hoops I did to decide on which treatment to take.

It's the other shoe thing, as previously posted, and I don't think it will improve what with all the "sweet pink bears" and all that crap.

No they don't. Thank God for this site and all of my sisters here. I would have been bonkers around May 4.

Thank you for this posting. As I am getting further along in my treatment and my fear level is dropping, my anger is increasing. I don't really expect family and friends to completely understand, but my brother and sister have each called me ONCE since I was diagnosed May 14. Their attitude is, since I had surgery, I'm fine. I have a friend who lives in another city who plans on going to our hometown (1 1/2 hours away for me), who expects me to drive a total of 3 hours to see him (on what will be week 5 of radiation for me). I have tried to explain to him that it is highly unlikely that I will be up to that drive since I'm already a bit fatigued from radiation. He could easily take a slightly different route home that would only take him 40 minutes out of his way, and come see ME in the city I live in - but, no, that's too much trouble.

I'm trying to focus on the people who ARE behaving well (a niece offered to drive down to get me and drive me back home so I could visit my brother when he was in town, which would be a total of 6 hours of driving for her - very sweet of her), and not be driven so crazy by the people who are NOT very supportive. Still, I sometimes want to scream, "I HAVE CANCER!!!!" at people when they just don't get it. A friend of mine told me yesterday that I did not "look" sick. I think he was trying to be nice, but it just kind of annoyed me - if we could tell by "looks" alone who had cancer, I could have saved myself some very expensive (and unpleasant) medical tests!

 This site has been a lifeline for me - I don't know how people endured cancer diagnoses before this was available. It is nowhere near so scary or lonely when you can "talk" to women who are going through the same things.

 Bless you all!

Karen

My family and friends and co-workers don't really talk to me about it any more and I'm glad. I'm 16 months out from diagnosis and trying to move on myself..but it is a struggle sometimes..Isee the onc in a couple of weeks and it just brings it all back...I don't want to go there but I know I have too.

I love being on this website because here I can talk about it...I've let it go in the real world but not my cyberworld....and I'm not letting that go yet.  Going through a cancer diagnosis, surgery, chemo and rads was the most absolute worst thing that has ever happened to me.  I am "normal" to my friends, co-workers and family but on here..I can talk about my fears..and sometimes just talk about the weather....I think of it as therapy..and it really helps. and that is what is good about this site..you can get on here and say whatever and someome knows exactly what you mean

And..I like Bob Dylan too! 

You're right they have no idea.  A friend took me to my last infusion on 1/24/10.  She watched the nurses double gloved, wearing their haz-mat suits mainline chemo drugs into me for 5 hours and then in the elevator, when we were leaving proclaimed -- "You're all done with cancer!"  WTF!!! I think some people are really just aliens.   Since I finished chemo I had 2 more surgeries.  One to remove my ovaries (February) and one to fix a breast reconstruction gone bad (June.)  While fixing the breast they removed a suspicious mass.  They told me about this while I was in recovery.  My PS told me that the Onc Surgeon was called in because they were concerned that the mass was a cancer filled lymph node.  They sent the mass to pathology. When they told me all this I had flashbacks to the 13 previous surgeries in less than 6 months, some of which left me fighting for my life.  I told a friend about the "mass" and how relieved I was when I learned it was benign.  She asked, "Did you really, at any point in time, that it would be anything other than benign?"  That's when I wanted to rip her head off.  Instead I said, "Hell yes, and so did the Onc Surgeon.  Is your question a joke?  I don't understand what you are asking?"  OMG!  People really don't get the fear that we live under.  They don't understand that each time when we go back to see our onc for our 'check-ups' were going to see if the cancer has developed into metastatic disease.  So yes' we do worry that it might come back and so do our doctors otherwise we wouldn't be going through this whole little ritual . Yes, I know, , we are much better at treating and saving women from breast cancer - praise God -  but can you tell me if I am one of the ones who is 'cured'?  NO!  No one can tell us this which is one of the reasons cancer sucks so much, I think  Yes I understand all about positive thinking, letting go, moving on, Blah, Blah, Blah...I get it and I am  positive person but sometimes I am just torn up inside by what I have experienced.  But people do not want to see that side of us.  They are all done with our cancer and have moved on and so should we,,,

...When I was going through my treatments the character on the show "Brothers and Sisters"  got brain cancer, had surgery, had chemo, lost her hair and recovered all in about  5 weeks.  Then she was back to her career with a cute 3 inch hairdo.  That's how people want it to be. Their attention span is short.  They can tolerate it for a bit but then it's "all done".  But  my hair is still not three inches long!  

It was just one year ago when I had my 'bad' mammogram so now I find myself reliving those experiences and I dread September when the nightmare really began.  But people just don't get it. And even our best friends really don't want to hear about it anymore.  There is comfort, at least for them, in talking about the mundane.  So I just keep it inside...I don't cry on the outside anymore...hummm starting to sound like Kelly Clarkson....

somanywomen..I like wine too!   And I get what you are saying....I think that no matter how much our "people" care about us..they don't realize how having breast cancer has affected our bodies and our minds and emotions....they don't understand that we want to be "normal"..but we just can't be the same.

.....and what's with the 5 year thing?

I just CANNOT convince people that after 5 years we are 'in remission' - not 'cured'. They look at me as though I WANT to be looking over my shoulder and can't 'move on'. I try to explain the true facts, but they are not interested..........

I've pretty much stopped talking about it with most people. They either change the subject abruptly (meaning they can't deal with it) or say something ridiculously stupid. Some of my "favorite" stupid sayings include "it can always be worse" (ya think???) "stay positive" (no, I'd rather wallow in negative thoughts) "it's over so put it behind you" (what, was this just a lousy relationship?) "you don't look sick" (want to see my scars???) and, my all time favorite "why couldn't it have been me? I'm ready to check out!" (why couldn't it have been her and no, I'm not ready to check out!).

I have a friend who had 5 bouts of cancer -- everything from lymphoma to thyroid to skin. I can talk about this with him! He calls me his "chemo sabe". 

I will mention it on occasion if I suspect they are a cancer person as well or have a good friend who is. Then I am happy to share whatever information they want. 

Peace, my friends!

I like your post Elaine.  I tend to cut people slack in this area - many cannot know what it's like and I wouldn't wish them to.   Yes, those of us who had invasive cancer will always have that worry and fear that it will come back, and I'm still in treatment so I am not past anything yet.  But, I hope that the fear will ease and not be omnipresent.  If it interferes in our lives than it's a problem.

My brother, too, did not call me once during my diagnosis/surgery/chemo. I take his kids each year for a week, and this year was no exception. His wife dropped them off.  He came with her to pick them up and couldn't get out of my house fast enough.  I think he spent 15 minutes inside, hustling the kids to get ready, and then went to the beach. Yes, I felt like the beach and his desire for relaxation is more important than me, his sister.  The only thing he said to me was that I looked like Jamie Lee Curtis.  

But you know what?  I know what my brother is like.  People don't change their spots.  He's always been an angry and self-centered person, and it's only in the movies that family members come together around a cancer diagnosis.   I had no expectations that he'd do otherwise. I love his kids and that's what counts.

If you start thinking that people are going to suddenly be kind and caring and sensitive when they weren't before, than you are kidding yourself.  

What I've found is people I didn't expect anything from were kind and caring and came forth with help, and enriched my life that way. 

I think it's important for all of us, whatever the stage, to live in the reality we are given.  We can't wallow in fear, but of course, we can't deny we have those fearful days either.  We can't expect more from the people in our lives than they know how to give.   People who haven't been there can't know the perfect thing to say, and in fact, the perfect thing to say is different for each one of us.  I think it's important to look behind their words to the meaning and emotions behind their words.  More often than not, they are meant kindly and to cheer you up.

Hi all,

it took awhile for me to find this forum, but I'm so glad I did because it seems that unless you've been through it, then you just don't know. My own husband lit candles at church for others affected by cancer, but didn't light one for me (it was my 2nd anniversary of my diagnosis). I got up and lit my own damn candle for myself. When I asked him why he didn't light one for me, he said, "I guess I have resentments from the past in our relationship." WTH?? I was diagnosed with cancer! This isn't something to use to air your grievances! Then he told me later, when I was worrying about a small lump near my mastectomy scar, "The doctor said you can't get cancer again after a mastectomy." Didn't he LISTEN??? I am disgusted and disappointed. Thanks for letting me vent...

Cathmg

Yeah, my dd does not get it.  She is 18 and really wants me to be back to normal, full of energy, ready to go and continue working.  She hates it when I talk about it and at times chastises me for being afraid.  I attribute her sometimes thoughtless comments to me to her age- she is bullet proof and knows everythng( don't all 18 year olds? and I also think she is afraid and doesn't want to face the negative consequences of my disease. 

If you count from when my cancer was being misdiagnosed it was over 11 years ago now..

and they still don't  get it...so I figure almost one sixth of my life has been this way...it will never change..

somanywomen - your post really expressed how I feel inside.  It made me cry.   I can't believe we have the same Dx date and the 1 year is coming up.  It still gives me lumps in my throat and takes my breath away.  I can't believe what I, and everyone here, had had to endure.  But I am learning to keep it inside.  Now that my hair is actually getting a bit longer I look less and less like a chemo patient.  I am in the best shape I have been in for years.  I lost 45 pounds.  Lift weights, run, do aerobics, etc, etc.    So I do look good but I still worry about metastatic disease when I get aches and pains.  

I know that many people don't know what to say.  I totally understand that.  I know that they really want to say what is best to make me feel better.  I love them for wanting to say what they believe would make me feel better.  When they ask, I usually just smile and tell them "Yes, I am cured!" because it is easier for them.   I do pray that they will never experience cancer and know what I know, or experience what I have experienced.  

Some day maybe I too will revel in the mundane as they do.  I look forward to that day, I think?  Or do I as the song says "live like we're dieing?"  Carpe Diem.

When I was going through all my surgeries, treatments, and surgeries, I never felt so loved.  Now that the treatments are done (except 5 years of A and more surgeries and bone treatments) I miss that feeling of being so loved, so every morning, I pray and dedicate myself to be God's servant for that day and I promise to love others,  I make an effort to make let others know how valued, treasured, and loved they are.  (As a teacher I have lots of little 'victims')  I strive everyday to make others feel loved, as I felt loved.  Most days, when the day is done, I think I accomplished my goal, with at least one person.   But some days ... someone says something particularly dumb and I want to slap them in the face.  WTH!!!!  Then I have to pray even harder the next day!

I think it is best to just share the hurt and fear here.  I save the hopefulness and positiveness for 'friends' and only my husband, and cancer friends know how I really feel and that is starting to be OK.  But it still feels like I am such a dichotomy!