anyone else anoyed at allways having to be happy

[helen098]

After everying I went through I am happier most of the times then I ever was before. I know this sound like a "life time movie" but I do feel more content, calmer less interested in all the little *&@#$% of life at work or on a person note. But sometimes I really get down especialy about my nerve damage in my hands and feel. The pain/stiffness/tingle
is constant it wakes me up at night and is allways their.
I have noticed when I mention this to people they allways say how lucky I am and to read between the lines stop complaining.
Well I can quarantee the person I'm taking to didn't take 5 minutes today to button their bra and shirt because their fingers don't work.
Also they don't have in the back of their mind will the cancer come back?
will it spread? Sometimes I just want to be mad at the world.
It was even worst when I was going through the checmo I noticed I received a lot less emotional support when I told people how I really felt.
But I don't care (part of my new attitude) I'f you ask me how I really feel then I'm going to tell you like it or not and I'f you can't deal with it then too bad.
Does anyone else ever feel like they have to be a "stepford patient"
All ways happy, thanking god everyday cause your alive?
Just want to know if I'm alone here

[seussfan]

I feel a lot of pressure because everyone I work with or friends, family, etc. are always talking about how strong and positive I am. What a great role model! Well, they don't see me when I am in my closet with the light off with a towel over my mouth trying to stifle the crying so my children and husband won't hear me. They aren't with me on my appointments when I can barely choke out my questions to the onc because I am so emotional.

I actually don't see myself as being so strong, but they all do. So with that I feel a sense of responsibility - of sorts. I have to put on a good show! But you know, I think in some ways that is good for me. Work keeps my mind busy and on other things. They don't have to know what I go through at home. Besides, it is not like I am like that all the time, I just have my dark moments.

Maybe I am stronger than I think. I don't want to be a mess all the time. But I certainly can't be a mess in front of everyone - I think they would lock me up!

[jsills]

I doubt that unless someone has cancer they can possibly understand how it is always on your mind. When I am asked how I feel I just say "fine considering everything" and let it go at that. I don't even think my best friend and wife for the past 42 years understands it all, although she tries to, so there is no reason to try and explain it to others.

That is why this site is so important to me as I can read the posts and stories, relate to them, and know there are others in this same boat. I feel for all of them and personally just try to beat this crap with a positive attitude for now, knowing some day the cure will be found.

Taking 5 minutes or more to button my shirt is a real pain in the ass though, so I know what you are talking about.

Jimmy

[sean]

I generally am happy being on chemo brain. I'm generally more pleasant to people - I guess cause I realize a lot of the stuff that goes on just doesn't matter. Also, when people really would have riled me up I've noticed that still being nice seems to catch them off guard.

Anyway, it does bug me on days that I feel like crap that people tell me how good I'm looking. I just say... "actually I feel like crap - one of the odd things about chemo is how you look and how you feel seem to be unrelated".

[klryder02]

Helen-

I feel your pain about nerve damage. It is the thing that bothered me most about going through chemo.

When people made/make comments like you look good, or you are lucky you are alive I try to tell myself the same thing. They don't know what to say. The people I know who have had some type of cancer never say things like that...because they know what I'm going through. People who have never had cancer don't know how to relate and have a tendency to say stupid or annoying things.

I'm sure I have done the same thing to someone else.

I'm not always successful at letting things roll off my back, but I try!

[ASTEPHENS33]

Chemo was definitely NOT fun, yet during the chemotherapy my life was organized around it and people were very supportive. Post-chemo it's this feeling - well it's over - so things should be back to the way they were. I think your identity changes from the experience and things aren't the same.

[kholt]

Yes Helen...a thousand times yes!
Everyone (even husband) is clueless. They think because the surgery is over and the folfox is over, we can just put all this behind us and pretend like it never happened. Oh except for the not so subtle hints about watching what I eat! Felt like I had to be "brave" through the whole thing. Not allowed to cry or be scared. Even now, almost a year later, as I get close to being done with Avastin, I start wondering, "Was it enough? Did they get it all?" But people don't want to listen. Every so often they'll ask you how you're doing, but they really don't want to know. They just want to hear you say fine. I think partly because your diagnosis makes them face their own mortality and makes them nervous.
I agree you are changed by the whole experience. I find most people aren't receptive to that change, whether it be a positive or a negative change. Not sure why, but I keep being reminded of that Dixie Chick's song:
"I'm not ready to make nice. I'm not ready to back down. I'm mad as h*ll and I don't have time to go round and round and round."

[DeeDee]

I know what you mean. I didn't have anyone I could talk to about my fears and worries. I was always the strong one that other people could talk to. Fortunately, I found the several sites like this one on the internet where I could share those feelings with others that understood them.

[bossan]

Jack Klugman, who has throat cancer, said "friendships elevate, freindships dissipate."

What bugs me the most is that, after 2 plus years of this with no end, other than my death, my mom and sisiter, who live together, are still in serious denial. They would be satisfied if I just call them and say how ya doin'? Its a beautiful day I'm having so much fun. Even though they both know very well what I'm going through. They don't see how much that hurts.

If any friends act like that, f**k em, they aren't friends anymore.

If folks ask how you are doing, tell them. You got cancer, you can get away with stuff others can't. Take advantage of that

[RobinS]

Hi Helen and all,
I can't count the number of times people have told me how I'm an inspiration through this. I certainly don't feel like it. I finished chemo 2 months ago and although I kept a positive attitude most of the time in front of co-workers, family, church and friends, in private I've had several break downs. I have the same feeling in the back of my mind on whether or not it will come back or cancer will show up somewhere else.

I'm also tired of the pain and numbness in my fingers and feet and how hard it is to button shirts and pants. I started a quilt (one of my favorite hobbies) during chemo with different colored cancer ribbons and have had people sign it. I wanted to have it done being quilted by our Relay for Life on August 11-12th, but can't hold the needle to quilt it anymore. I'm going to bring it with me anyway, but it is frustrating. I type a lot at work so by the end of the day my fingers usually throb. I'm also tired of standing up and walking like I'm 90 instead of 46 (and in relatively good shape) because I get so stiff if I sit for long and my feet hurt.

Last September, just before my diagnosis, I started taking tap dance lessons. I continued to go as often as I could during chemo with only the teacher and a few others knowing why I wasn't there every week. My first performance with them will be at the Relay for Life and I am being put in the front row because of what I went through. Not sure how I feel about that, but I know it was meant with the best of intentions. Another dancer is finishing up treatments for breast cancer.

I also don't let things people say or do, especially at work, bother me so much, and have found if people ask me how I'm doing I let them know instead of the obligatory, "fine" answer I used to give.

I'm so glad my husband (a bladder cancer survivor) found this site for me. It means so much to have others you can be honest with that understand.

Robin

[Joy]

xxxxx

[Joy]

NED since October 2006. I've noticed over the past few months no-one asks me "how are you feeling". They all are convinced that I'm "cured". I on the otherhand spend lots of sleepless nights worrying "is the beast going to come back, what if, what it".........

I mentioned my fears to my Doc (I was visiting to get a prescription filled) and she just flipped me of with "well you had a good surgeon, a good oncologist, you have a good chance of surviving".....end of conversation.

I don't want to dwell on the subject but without the support of this group I really believe that I would be in a really bad state of depression.

Thanks guys..... I little bit of bitching and complaining is all that I need.

Thanks for listening

[LA8]

Hi, Helen and all. Well, I'm certainly in total agreement with everything that's been said here! So friends, relatives, and others please take note - we do have feelings and sometimes do get tired of performing for you so please give us the occasional break