Coping with fading support

Hi Lisa, I welcomed less attention 'cuz to me it meant I was getting on with my life, cancer be d*mned!  It doesn't mean people don't care, it's that they don't perceive a crisis, another good thing.  Hope it's going better today!  {{hugs}}

I don't know what help it is- but I can relate.  For everyone else it is over, for me it is not.  After all( as I have been told by some) DCIS was not "cancer" and my BMX was a choice.  I do find a lot of support here and most days I have a keep your chin up attitutude, I have been very lucky so far. 

I hope you are doing well.

My support ended pretty much the day I finished treatment - A year ago this week.

What I can't get my dh to understand is that chemo has lingering effects for years.  I got thrown into menopause, I gained 30 lbs, I am physically hurting so I can't exercise to get the weight off, I go into a depression at least once a week where I just stay in bed all day long.  I struggle to perform normal housewife activities.  I don't have the stamina or energy I had prior to chemo and I am not sure I will ever get it back.

This is why I come here - I come here for support and understanding by the wonderful women on this board that truly get it and knows how it feels.  Sometimes I feel that BCO is more of a family to me than my own family here at home.  I get more support here at BCO than I do from my own husband and that is sad to have to admit to.

I can hardly wait for the Las Vegas reunion in 8 days - just to get away with 55 other BC women and party for 4 days - I wouldn't miss it for the world - I know one of two things, I will either come home rejuvenated and feeling great emotionally or I won't want to come home because I had to much dang fun!  

llm822 - What you are going through is so very important to YOU and there is nothing more than we need at this time is the support of others.

I think what hurt me the most is that friends I had for over 10 years - they found out I had cancer and never once called me - even 2 years later I haven't heard from them.  I finally called one of them and her response was "I have been wanting to call but didn't know what to say" - I get that - I really do but just call me anyways.  I don't always want to talk about my cancer, I want to hear your troubles so that it puts my mind in another place other than on what I am going through but they think of it as another burden to me emotionally to discuss what they are going through as they don't believe their problems are as important as mine.  I confided in one friend and told her I was concerned to even tell her because I had been ditched by so many other people who I thought were my friends.  She promised she wouldn't do that - well she did.  One email later and then nothing at all and no response to my emails to her.  Cancer is not contagious!!!!

All I can say is too try to fight the after effects that people do not realize we get. I have a few friends who understand but its hard. I hate to whine but thats what I fel like I do now. I have alot of conflicting emotions about alot of stuff, marrige, work, friends etc.But I think this is natural when we go through a life threating situation, ow can it not change the way we feel. whether we are 0 stage to stage 4 we are emotionally effected. My life will never be the same. Some can say they go on with their lifes and I give them Cudo's for that. But me personally will not Yes I have PTSD. But even if I did not I really feel it takes a truly amazing person whom can go on with their life without this cloud hanging over their heads.

Hugs,

B

Hi Lisa, sorry about the lack of support from your friends and family but the problem is, they don't get what this disease is all about.  In just about any other illness, you are operated on and perhaps given some follow up treatment, given a little time to heal and you are okay again.......you and everyone that has ever been diagnosed with Breast Cancer know that's not what happens with this disease.  For those closest to you, it's a matter of actually having to educate them as to what this beast is all about and the others? well that is up to you.  Always, always remember....we do get it......so whenever you need support for anything you come here to us........we do know what you need and are very willing to give it.

Peace, strength, love n hugs.  chrissyb

I've had some people basically stay away because they didn't want to interefere with my sister helping me.  My sister comes over and lies on the couch...

People I have worked with have been incredible moral support, but don't live close enough to be of any practical support.  Not that moral support isn't worth its weight in gold - I don't know what I would do without them.

Luckily, I have the absolute best, most supportive husband in the world.  I just worry about him burning out with doing everything for me over two cancers (thyroid and IBC) as well as working full time.  He's come to all my medical appointments with me, and makes the most upsetting, awkard circumstances funny.  I am truly blessed with him.

Hi Lisa!  You have already heard anything and everything I was going to say or could say... I am there now.  I have friends, and then I have Friends... now.  My friends brought me dinner once... some of them I had considered Friends, but some of them didn't even bother to take off their purses as they 'dropped' the dinners off... really?  Many of my friends have not even called me; yet a woman I met on facebook through a mutual friend was recently diagnosed with Stage IV called me tonight because she said I sounded a little down in my last message (I was complaining about still being sick from my last chemo)... my other friends have not called or texted in weeeeeks.  I don't get it... my husband can't explain it nor understand it; but I think cancer scares people and they simply freeze and just don't know what to do.  So, like others have said, my definition of Friend has changed a lot over the past 6 months, and I cherish those few true Friends that I have left.  I'll still be friendly to the "ones" (and they don't know who they are!!) but will not go out of my way to seek anything more than a surface relationship.  

And, I too come here for support and understanding!  (((HUGS))) sister!!  PM me if you want to be my fb friend too! 

I totally get it.  Even when I was still doing Herceptin every three weeks and I would mention "When I was at the hospital today...", my dad would say "What were you there for?"  Um...hello?  Then he'd say, "Oh, I keep forgetting you still have to do that."  Don't get me wrong, I'm glad to be able to start putting this behind me and move on, but it would be nice for someone to acknowledge once in awhile that there's still lingering issues we have to deal with, however small they might be.

I have Lymphedema, too.  In every conversation with my mom, she asks if my arm is better.  I keep telling her its permanent and it's not curable.  She does not get it.  Others do not get it either.  If asked, I almost always use the word "permanent", which causes surprise every time.  Makes me wonder if all these medical shows which find answers in less than 60 minutes mess with our expectations that if you hang on for 60 minutes, it will all be over with.

What a great kid vivvy!!!

I noticed that as well. I have only the support of my husband and everyone else has changed the subject. I am glad for the new friends that I have made here. This is what keeps me sane. I understand what you are going through and you are not alone. I hope that you make new friends that can support you through the rest of this cancer thing. It is not over for a long time! I think that trying to get out and living is the best cure for the situation! Dont stay at home and isolate yourself from the world. Complete strangers are facinated to hear what we have been through and volunteer support. God sends everyone to us for a reason. God bless and PM me if I can be of any help to you.

I know the betrayed feeling that can come from co-workers. At first everybody was really supportive and then it all changed.

After my BMX, I returned to work after being gone 8 weeks and was treated coldly at best. very few asked how I was and if they did it was like, "god, I'm glad that's not me" kinda of questioning. The real kicker came when the one woman who is a breast cancer survivor has refused to speak to me believing I was off far longer than required. I was still going through recon of TE's and felt awful about everything so it really took a toll on me.

Then the one month they really hit me was after they had a company quarterly meeting. They gave the award of the quarter to my fellow admin co-worker for pitching in and doing my job while I was gone. I understood it sort of but I was shocked at how they mentioned my illness and not being there doing my job and awarded her! It just recently hit me I was the one who lost both of my breasts due to cancer, I'll never be the same again, nobody is talking to me anymore-I am the outsider  and yet they give her a money award and recognition and applause because she had to go get the mail, go the bank and order some lunches for a few months! God I wish I could take all this back and somedays I hate myself and them. It feels like I've been victimized by the cancer and the people I thought cared. NOw I had my exchange surgery a week ago and don't think I am going back! But I will see a therapist soon because this whole thing has messed me up!

I am prone to depression

  When I got my BMX everyone more of less just thought you are ok..When I developed problems with my reconstruction even my Dr said "you are Lucky we got rid of the cancer'.Sometimes I feel the cure was almost worse than having the cancer in the first place..I was advised by my O Surgeon to have this done. I had DCIS and LCIS in my right breast. so I had both breasts removed as a preventative measure.

I am still dealing with the after math or my reconstruction. No one seems to care and they don't want to hear about it..I still cannot deal with the problems. Don't know what to do...Yes, I too just would like to be able to move on but it is so discouraging..

thanks for letting me vent

Laura.

Thanks Andrea,

I am still have to convince my Dr that there is a problem. I guess these guys see so much other stuff. My problem may seem petty to him. Did you have reconstruction done?

I know there are people here that get wonderful results I unfortunately did not. I just don't knwo how to handle watching them slide down my chest an my arms are a mess as well..don't think I could explain as it seems no one else I have heard has had this problem.

God Bless You Andrea