Angry rant-Please tell me if I am being a jerk!

I was given this advice shortly after diagnosis by a bc survivor/volunteer at my hospital:

"This is your cancer. This is about you. You don't need to prop up other people or try to make them okay with your illness. They should be doing that for you. You're going to feel like crap, physically and mentally. They need to deal with that. If you don't feel like doing something, don't do it. This is your time, and you come first. Spouses, kids, friends, and coworkers need to get over themselves and put you first for once. Don't feel guilty about this."

I've always needed a lot of "alone time," so I understand perfectly. I find it especially beneficial during the healing process and when I'm psyching myself up for more treatment. Tell your family how you feel, and stick to your guns!

Robyn

I am two years out now and I really understand what you talked about. People think they are helping and you do really need time to be alone, somethiing I have always needed. Like Deanna I think our DHs often do not say how they really feel, they really do want everything to be right for us but forget to consult us at times. Talk to him and your family.

On another thread I told of how frustrated I was recently when attending a family function, several people -individually- said to me now treatment is over you can forget all about IT. I really wanted to shout at them and say how can you forget when each day you have to confront yourself in the mirror and see the horrible scar that was once your breast - I was unable to have a reconstruction. I wanted to tell them that you live everyday with other problems caused by the drugs but you cannot as they think you are complaining.

Its place like this were everyone understands. I have found this place such a help and a comfort. Robyn you are not alone we are all here with you cause we are on a similar journey and have encountered similar things. (((((Robyn))))

Alyson

Alyson

i'm sorry.

there is nothing i like better than time alone to work, putz and just be.  sorry you lost YOUR time.

You said it so perfectly! There are so many people who tell me "not to think about it anymore" or "don't dwell on it" or "so glad it's over," or "don't drive yourself crazy," etc. I think that's one message that should really get out there--Once you've have cancer, it's always a potential unwelcome visitor.

You are not being a selfish princess....It can be hard for family and friends to totally get it...how could they???  Even when you try to explain it, like I did to my Mom!!!!  I had a BLM in Oct with serious nerve damage and TE.  I had already done chemo,  2 weeks after the surgery, my Mom actually told me I should just be thankful the cancer is gone.  I was so weak from chemo and 3 surgeries within 10 months.  I guess she didnt want to hear me complain.  Thank God I have my dh....he has been a rock.  You may have to sit him down and try again to explain what your needs are.  Recovery takes a long time, especially when we are still dealing with the fallout, like reconstruction, and drain tubes, and dr appts, and praying it doesnt come back.  You take all the time you need for healing, even if that means alone time.  Hang in there!

Hugs, Karen

Robyn! Bless your heart, you dared to voice what most of us feel.  I think Celtic spirit said it perfectly.   I made a vow to myself when this happened that I would NEVER EVER again take one moment on this earth for granted, so that means that when I want to do something for me I have to do it, I have always been one of those people who needs "me" time, even if its an hour with a magazine or book, I need that time even more so now, its important for my mental health and damn it I deserve it, and that doesn't mean I am a princess or selfish or anything of the sort, we need time to heal and relax and to just breathe. So don't feel guilty about wanting your day, voice your needs, stick to your guns and enjoy your time!

Lorraine ox

Oh Robyn you are not a jerk.  I, too, have always needed "me" time.  My family lives up your ass.  I stayed angry for a lot of years just trying to get alone time.  I think that's why I smoked for so many years.  It gave me a good reason to get away.

I either got too old or too wise (I think its age) to be bothered with subtrefuge.  Now I just say I need to be alone and leave.

This doesn't mean we aren't strong women or want to be treated like a fairy princess.  Of course we're strong women - we're living with breast cancer.  Asking for what you need is not being a princess (although I would like to be one just one time!), it is simply asking for what you need.

I also know what you mean about people being there for you and doing for you.  You feel like you owe them but haven't we done for them in the past?  Wouldn't we "do" for them in the future if needed?  You're darn tooting we would.

I was going through this breast cancer BS (and I don't mean breast cancer) as the brave silent type when one day I just had a major meltdown and what caused it was (1) it was sooo overdue and (2) my family was expecting me to be strong and suck it up.  I blew!

Having had breast cancer, it is never normal again.  Hell, I wasn't normal before why would I be after?  There is always the fear it will come back or something else will go wrong.  It is a sad day when you body turns on you. 

Here's my advice - normal and sanity are way overrated!

As I read these threads I find that I am not alone with these feelings I am now struggling with since finishing my treatments in February. One of my friends said to me "Now that you are done with treatment and cancer-free you can get on with your life again".  I wish it were that easy and how do I know that I am cancer-free?  I have to have a TUG flap in May because my TRAM failed.  My family just says "Well, at least the cancer is gone, this is more cosmetic".  It makes me not want to talk to them anymore I get so upset.  Now I feel that it is okay to have these feelings!  Thanks!

Rubybuttons:  How about "Define 'normal' please."

A lot of times I feel the same way.  I hate to take a shower because there I am in all my glory.  When I dress I am reminded of breast cancer.  Even if I have reconstruction, the scars won't go away, I'll have no feeling in that area, and I will have to worry about leaks from implants.  When the hell does the 'normal' stuff start?  I know I am blessed and did not have to go through some of the traumas others do.  Maybe the good Lord thought I wasn't strong enough as you wonderful, warm and wise women out there.  I am continuously awed by your spirits and generosities.

Even though no one says anything directly, you can feel people don't want to talk about it anymore.  I think it is a combination of (1) the word 'cancer' scares them silly (it scares me too) and (2) "you had your fifteen minutes" now its time to move on.

There is no 'good' cancer.  I'm tired of people telling me I was lucky.  Lucky?  Are you out of your mind.  Lucky is you never develop cancer.

I, too, am addicted to this board.  It is the only place that feels safe and comfortable - like home should be.  You women give me strength, wisdom and love.

My thoughts and prayers are with you everyday.  Thank you for being there.  Love and hugs.

This is such a good thread and I loved reading all the comments.  I had such mixed reactions to people's comments, etc.  It seemed that people who had little interest in me before all of a sudden were smothering me, and those I thought were so close, backed off!!!!  When I couldn't eat a thing during chemo, I was smothered in huge meals I couldn't eat.  Some people acted as if I were dying and had little time left -- others saw me as strong and healthy and expected me to go on as usual like "so what if you have cancer."  There seemed to be very few that had a nice midline and not on either end of the extremes.  Two years ago, I walked through all this with my sister, so I was somewhat prepared for the permanent changes in emotions, life outlook, physical things, etc.  But I do have a lot of complaints, too, that I just don't share because each one is just met with, "But you should be so thankful for each day and that you are getting treatment!"  So there goes the guilt trip.  Every day, I thank the Lord for all He's done for me, etc.  It's not that I'm not thankful!  It's that I want to be able to do more, feel better, and not worry about cancer returning, going through all this again, etc., etc., etc. 

Thanks for bringing all this up.  It's great!

Cora

I have to say...I live for my "me" time some days.  It really bothers when it gets spoiled.  What bothers me the most is that one of my closer friends can barely look at me anymore.  Its ashame because our sons were best friends.  About 4 hours after a chemo treatment, I see her and she says

"Are you sick?"  I was just like WTF?  Where have you been?  Granted, I go for CMF and have not lost my hair and there is no physical change in me, but really!  

When is all is said and done, I'm going to let her know how disappointed I am in her!  Just once call to see how its going, how you feeling, can I help with anything?

UGH!  Thanks what gets me most!

I have to agree about the chemo treatments, Robyn.  As sick as I was with the chemo, I at least felt that there were little "pacmen" racing through my system, eating up the cancer cells.  I almost WANT to have a treatment now and then "just in case."  I hate the mirrors, too.  And I hate the hats.  I feel that people are uncomfortable looking at me.  I was self-conscious enough BEFORE cancer.  Now, it's even worse.  I'm not uncomfortable for ME, but for the person looking at me.  I, too, feel so much like you others, that I owe people a jolly spirit, smiles, happiness, etc.  I had gotten a million cards in the mail at the beginning, but now, 8 months later, I very seldom hear from anyone.  It's like, "get over it and get on with your life."  Well, I feel like I'll never be over it.  Since I couldn't have reconstructiive surgery, I'll always be weird looking, and the reminder will always be there.  Plus, since mine was stage 3b, I'll get up every morning of my life, wondering if it's back or spread to some other part of my body.  And now, other changes are taking place, too, like high blood pressure, new dr.s to add to the list, etc.  So. . . .I'll never be the same old me, for sure.  I almost want a whole new set of friends that never knew the old me!

Cora

Kathleen,

Ditto to all that you said, but there is also the selfish element of our loved ones, especially if we were care givers for them. I live with my 90 year old father. He just can't accept that I can't do all that I did for him before my bc. And as he ages and fails more physically, I will not be able to keep up. He objected to my hiring a cleaning lady just to do the bathrooms (3) and kitchen...said I could do them on my weekend (I work fulltime). I swear, I nearly bashed him with a frying pan for that comment.

They want it to go away, yes, but from my perspective, it's for their selfish reasons. Not one of my relatives has said, "We were just afraid you're going to die."  It's all been about what I couldn't do for them while I was getting chemo, and what I can't do for them anymore. I guess, though, actions speak louder than words. They didn't abandon me, but then, they never asked me what they could do for me. They just did what they wanted to do. In the long run, it turned out okay, but going through it was very frustrating.

My time...I TAKE it. I go to my room and shut the door. I turn on my TV and I only answer my daughter's knock. If visitors overstay, I drift away to the basement and start laundry, lol.

Robyn:  I feel for you.  I used to say that my family put the fun in dysfunctional.  My stepfather was hell on wheels.  He was like a 'dry drunk,' totally volatile, unpredictible and always waiting for the other shoe to drop.  No one knew what set him off.

I used to think it was because I was his stepdaughter but he had four children with my mother and just as mean to them as to me.

In later years he tried to curry favor with me but I was having none of it.  I've spent a lifetime trying to straighten out what he warped.

Thank God he didn't have a gun or he probably would have shot all of us.

I think you are right - it does make you stronger and a fighter.  Afterall, you had to survive in your own home where you are supposed to be safe.