THEY HAVE NO IDEA!!
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I live with the knowledge that I might get mets someday or another cancer someday. I try not to let it overwhelm my life. A week before my Dx, i was fired from my job. While having surgeries and treatments, my sisters abandoned me. Maybe they thought they could catch it. My DH was supportive but he didn't understand the full impact of chemo on my body and how tired I was and still am. He thought I should be cooking and cleaning and all coz after all, I wasn't working. Onc did explain a few things to him and that helped. My "friends" never called never came over. I didn't feel special at all during the "active phase" of my disease. I felt like a leper. I'm back to work at the same place that fired me. My "friends" are all there being my "friends" again. I don't talk to them about my cancer, my feelings my fears or anything but work and social pleasantries. I really can't take them seriously because I know the true extent of how much they care. I'm no longer innocent. I really don't expect anything from anyone any more. If I do get it, that is a bonus. I think that this is the reason so many of us stay on this board long after treatment is done. No one understands or cares like we do. Thank you all of you for being here for each other.
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Thank you, Firni, you said it so well.
Friends and co-workers are so convinced it is 'all in the past'; family don't like to mention it for fear of 'upsetting me'.I am a single parent, so no DH to empathise (or not)....have to pretend it is all ok for my autistic son.
No-one else gets it, or cares like we do.
That is probably one reason why I am still on these boards nearly nine years on.
I feel so supported by my sisters here.Thank you all.
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I will NEVER forget you Firni for supporting me through chemo. NEVER!!! xoxoxo
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lovemyfamily... I remember your dark days. I'm so glad I was able to be there for you and extend that cyber hand.
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Firni-
I had a friend today ask me how a project was going.
Bless her heart, like most of our associates and family, they understanding nothing about chemo.
For two seconds I wanted to yell, "Everything hurts! My side hurts, my stomach gurgles and churns. I don't sleep well at all, I'll never detox from all this cancer medication, AND they want me to take vitamins with a full meal. WHAT full meal? I never eat that much at one sitting. It'll hurt my stomach. It feels like someone is kicking my side in sometimes, and I just yell out in pain. I shouldda done my homework on HRT. Faslodex ... terrible. Femora - worst of the worst. IF I loved you any less, I'd tell you the truth, but I never tell anyone how bad I'm feeling."
Big hug to you, sister Firni,
{{{{{{{{{{{{{{{{{{HUG}}}}}}}}}}}}}}}}}}
-sessna1
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I wish I could meet all of you. It just makes me so sad to think of us scared & feeling alone sometimes while being surrounded by others. Our support & comfort is here on these boards with others like us whom we have never met.
As I said earlier, my 4-month check-up was fine, I see the onc again Dec 6 & I was told after that I will be seeing her every 6 months. Wow, a bit scary. To go from every 3-4 months to every 6 months.... At the end of Oct I will have my mamm & I have already had anxiety about that, but I don't say anything to my family. My DD's have their own lives & my DH would just tell me that I will be just fine & everything will be okay. He doesn't know that, really. Like I said, I feel like my life goes from one appt to the next.
As I was waiting for the NP to get me copies of my blood work-up results & an US report that I never got from just before I was dx, the other NP asked me if I was in the health profession. I told her no, that I just wanted to be informed & to know everything that was happening with me. I had copies of all reports/scans/biopsies, etc & that I did a lot of research. She said she wished more patients were like that. ~heartsoul76 ~ I still do research like you & I will be two years out in Nov.
Firni ~ When you said, "I really don't expect anything from anyone anymore." I will tell you this, sister: You can expect us to be here, day in & day out, 24/7 for YOU, always.
It's just so damn sad that there are so many of us.
I have a magnet that my SIL gave me way before my dx, but it so applies to all of us:
♥ SISTERS JUST GET IT ♥
{{hugs & blessings}}
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Valjean,
Nooooooooo! I don't want to keep researching......but I know I will. I think it's my security blanket. Just today, I was complaining to my son about the bills and I threatened to get rid of cable AND the internet. That last part was really for me, because sometimes there is just too much information, good and bad. Ignorance is bliss? Maybe before cancer, but after cancer you just don't have that luxury anymore. Plus, I get SO much information from these boards! Everybody's input is so helpful - I always come up with more questions for my doctor. What did the poor women do before the internet? I pray they had stronger support from family and friends, because I would be a complete nervous wreck if I didn't have all of you here. Thank you!!!!
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Firni,
Sessna1, with a 2-3% benefit from chemo, I chose not to do it and to try to do a diet and lifestyle change to make up for that 2-3%...But everytime I read the pain and agony of those of you that are bravely going through chemo, my heart breaks, it must be so rough on some of you..When I was 14 my little sister (she was 12) had to do chemo for a brain tumor, she was so sick, lost her hair, had 3 operations and lost her battle at age 15, she became extremely religious during that time and amazingly had no fear of dying, she said she knew where she was going and wanted to be there so she could be well again...If anyone ever made it to heaven, I know she did...
Valjean, I too keep copies of everyone of my scans, I even picked up film of my 6mo follow-up mammo, when I took these to my surgeon and asked about the clump of titanium surgical clips (there's about 8 where I swear I can feel them from the outside), he asked had I gotten a degree in radiology since the last time I saw him (he was making fun of my inquisitivenous)..No, I have not, but I do believe that I at least have an AA in BC at this time.....I keep my copies of everthing in a binder and can not tell you how many times I have referred back to them...The one thing about the magnet that I would change is from "SISTERS JUST GET IT"..to.."BC SISTERS JUST GET IT"..
heartnsoul76, you're right, we no longer have the luxury of thinking "ignorance is bliss", I sometimes wonder if I had not have found this website if I would be less concerned about BC, I think not, I do however know I would be more ignorant about BC..
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Because my hair really hasn't come back 16 months post chemo, when I do see people I haven't run into for a long time, they ask what happened to my hair or they say, what a cute haircut. Right. Like I would intentionally get big bald spots from my hair dresser. I either tell people that my onc gave me this hair do or I just say the cute do is a gift from chemo. Then they whisper, Oh I'm sorry. What kind of cancer do you have?. When I say breast, of course they look at my chest. The next question is, Are you ok now? Most of the time, I just say yes. They can see my crappy hair and the wraps on my foot that's still swollen from chemo and the fact that I've aged 10 years in my face. They don't want to hear about that. I if I wasn't ok, they'd just back away. (leper) I want to get a shirt that says "Just step away. CANCER" Or "Hair by Chemo" Or how about "Wig $250. Eye Makeup tattoo $400 Special bras $120 NED priceless." Of course, only a Sister would understand that.
I keep copies of everything too. I have referred back to things. Some one has to have the whole picture in one place.
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Oh I am so glad to find this thread...I am a two timer and this time invasive...still not in nodes, but a bit scarier.
No one can "get" it, unless they have walked in these shoes, ladies. They cannot. They can emphathize, (hold those people close), worry for you and love you (hold them even closer) or wall you off and drop you and refuse to talk about it. My twin sister does this (well, not my twin, 10 months apart so we called it twins and were raised as such)
It says so much more about them. DH cannot deal at all. He has to bury that head in the sand as if he did not, I doubt he'd get up in the AM.
I've been astounded by the kindnesses I've met with (mostly medical community and ladies here) and the idiots that I thought would "get it" that I thought were my friends. I don't expect anything anymore, but I am always pleasantly surprised when someone is empathetic. Most folks really really REALLY do not want to know when they ask "how are you?" they want you to say fine, and shut up.
As it was so well put, we ARE all on the same bus, here tho. Everyone dies. Everyone gets old (if lucky) and everyone ends up shucking this faulty container and going to the other side. People that don't "get it" included. Everyone.
Perhaps we are just too much a living reminder of that for some folks to handle.
I don't know much but I know that this site is a godsend for venting on this. It always hurts when our near and dear don't get it. Due to arimidex I walk slowly, land stiff, like an old lady. Yet, my husband, who insists he loves me dearly, and has sworn to be considerate, even when reminded that I need him to slow down, will just take off, and leave me to keep up as best as I can. Still, and this is the second time here. The one half of me is glad that he does not view me as "handicapped" by arimidex, the other half of me is incredibly pissed. So I choose to just go at my own speed. I think that is what we have to do with all this crap that people act, don't act, say, ,don't say, etc.
Go at our own speed.
love to all sisters.
xoxo
annie
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Ah yes the "disappearing friends" - very interesting - my best friend (of 60 years) still my closest as she had bc six years ago - but many others just dropped out of my life - I know from the few and best that stayed with me that the "others" ask how I am but don't call, write or email or God forbid visit! I am going through another crisis - testing continues next week but because of all of you on this website I am much better educated and actually maybe courageous! My DH passed away in the middle of last crisis and was so sick while I was undergoing chemo and rads that I think I broke his heart - he was hospitalized for 155 days in 2009 starting 8 weeks after my rads finished - if I could survive the last two years I can survive anything.
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My God, Sandy. You have been thru more than any of us I think. You are so lucky to have your friend of 60 years. Prayers that your testing goes well. You know you have our support no matter what.
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I just read every single post on this thread and I think I could relate to all of them. I wish I could acknowledge every single sentence that touched my heart. To know that you are not alone at a time in your life when you feel most alone. somanywomen said, "There is a type of loneliness that is attached to me now" summed it up perfectly.
I'm "done" now with treatment so I'm supposed to get on with my life whatever that means. But now is the time when I can actually take a breath, mourn my losses and process what has been done to my body, mind and soul. This is the time I need support the most but can't find it (except on here, of course).
I'm reading "Five Lessons I Didn't Learn From Breast Cancer" and the author has a quote in there from a friend's blog discussing why she remains active in the breast cancer support community, instead of moving on, as many people expected her to do when her treatment was over. "A friend described finishing treatment for cancer is like coming back from a long, horrible trip and getting off the plane. You walk out only to find your friends and family have already left the airport. Just when you're done, and you need support almost more than you ever did, many in your life will assume it's over. That it's time to grab some dinner at Chili's and talk about other things.I consider it my duty- actually, my honor, really- to be there waiting for people when they get off that plane." So just wanted to thank all the women on all the threads for being there when we all get off the plane. And not just for being there, but for helping me with my baggage, showing me how to get home and helping me unpack when I get there. Without all of you here I would be circling in the fog unable to land. -
Somanywomen, thank you. Bless your heart. May your little sister continue to thrive in Heaven.
More on Femora from another board:
http://www.healingwell.com/community/default.aspx?f=14&p=2&m=393412
It apparently works well for some, but it's %ell for others.
sigh
-sessna1
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I've also read all these posts. I'm stage IV ibc w/ bone mets from 6/09. I've been amazed at how much a few of my friends with stage 2 & 3 breast cancers go through. They and I'm sure most of you have endured the whole route: chemo,surgery,radiation, reconstruction, hysterectomies. Being stage IV, my onc decided chemo & hormone therapy with a bone infusion of zometa was best for me.
After reading these posts, I beleive it does not really matter if you have stage 1 or stage IV. We all have the same anxieties about reoccurence because it can and does happen to anyone. We all have the same fear.
Brenda, I liked your post about being God's servant for the day and focusing on helping 1 person each day. I think it's a wonderful goal.
I also am blessed to be able to talk with all of you about the struggles of what we go through. Thank you so much for posting and sharing yourselves with all your sisters here. God Bless all of you.
Terri
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Kate33, thanks for posting that quote. I've often be chided by family for remaining on the boards all this time (8years in oct.) and I usually remind them that I've a lot to pay back for all the help I rec'd when I was new, medium and thru scares.
I found I couldn't remain on the newly dx'd parts (and am way past being informed on recon and treatment) after my dh was dx'd with throat and prostate cancer within 6 mos., but I can come here and let you all know that for most of us, it does get better. You do begin to live! and you go days and days with no thoughts of bc.
As noted above, it's about the time when active treatment is over that we have the energy, or brain cells set free, to consider what has actually almost killed us. That's the hard part: the loss of innocence. We all kinda thought we'd live forever--at least we gave NO thought to actually dying. Good grief, that happens when you're old and sick and stuff.
But when one has looked death in the eyeball and discovered that yes, it's possible, ME. No one else can understand that. And I wouldn't wish it on anyone. My loss of innocence, even at 59, was almost debilitating, and I would guess for many of us, the same. I do make plans, longish range ones, and look forward to good things. And I go every year for a mammo, and most years it's just fine, except for that tiny little twinge in my gut that says : never know.
But, you know what? I would be sad, but I would be so much better informed than I was when first diagnosed. Ignorance is not bliss, and knowledge IS power. I may not be up to date, but it wouldn't take me long and from here, I'd be getting another Master's in BC. And begin being a pest in the doc's offices again.
Blessings and peace upon all of us. We deserve it.
Hugs,
Dotti
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Dotti- So well said. I tell my family I stay on here because I try to have something good come out of all this. Otherwise, what was the point? Some women say they have grown as a person because of BC. The only growth I had was the one that the surgeons removed from my boob! I feel in the "real world" there is a time table I am supposed to follow but on here I can take as long as I want to graduate and no one judges me for that. It's the best therapy in the world.
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I love this place!
Thank you, ladies, for making me feel normal again!
(((HUGS)))
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Thank you Dottie and Kate for expressing so well why we stick around. Once we've gone thru our 18 to 24 month journey, we all pretty much have a degree of some kind in BC, recon, chemo and the aftermath. Giving something back out of all of this is so important to me. Helping women here and in my physical world. That's why I make heart pillows for women facing mx. That's why when my sister who abandoned me had a scare 6 months ago, I was there for her.
Kate said the only growth she experienced from BC is the one they took out of her. But I'm not so sure. I know I'm able to get past some things that were a big deal before, but now seem petty. I know I can forgive people much more easily than I did before. And I'm much more able to give of myself and not wonder how it will benefit me. Maybe these things would have happened anyway with more maturity, but BC sure did hasten the process.
My face to face with death was fleeting. Maybe only seconds where I was crippled with the thought of not being here any more. I knew that BC would not kill me. At least not now. But that was enough to open my eyes and start the process of my recent maturation.
There are still some things that I have no idea. If I get mets, go into stage IV, what will I do and where will my emotions be?
I think I'm getting off track here some. Haha. So easy to do these days. Just ramble on. But, hey, who else will listen to this stuff?
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Firni, you say
"I know I can forgive people much more easily than I did before. "
With me it was the contrary. I am way less forgiving now. Things that would have passed by me and I would have brushed away easily now get an "excuse me? there's the door, make sure it doesnt' hit your a$$ too hard on your way out". I am not letting in my life anymore drama queens, insensitive people (oh they just can't relate), rude people (poor thing, he/she had a rough childhood), poor manners (oh, they never were raised properly, they have time to learn). Nope. Not anymore. I don't have time to wait for them to learn. For as much as I have left to live, I am interested in quality, not quantity, in all respects.
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ibcmets, your paragraph, "After reading these posts, I beleive it does not really matter if you have stage 1 or stage IV. We all have the same anxieties about reoccurence because it can and does happen to anyone. We all have the same fear."............Mentally, the recurrence thoughts are always there...I am always reluctant to post on IV topics, but you best better believe that we read them and wish there was something we could do or say to help...Not only do you have the support of IV's that totally know what you are going through, but you have the support of each and everyone on this site....
Day, I know what you mean, some things that used to be important seem so petty now..I feel that so many people let these meaningless ideals rule their every day lives...I feel sorry for them..
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Yesterday is history...tomorrow a mystery and that's why "today" is called "the present."
Thankfully I was young enough (37) when diagnosed and treated that my second opinion oncologist thought that chemo treatment wouldn't be all that "statistically" beneficial. I'd had four major surguries in less than 7 months... I'm over nine years out.
Most helpful for me: changing my diet to no-dairy (helped me feel I was in control and assist my body in healing.) Going to dinner with a friend who wasn't married with no kids and laughing for hours on end. And rarely (if ever) "worrying about it." Cuz I figure, "why worry twice."
Honestly, the only thing that really gets me going, is all the pink washing. The cure for breast cancer is prevention!
There are no right or wrong feelings! I try not to lash out at those who love me most...and those who are jack asses and say the stupidest things, well... hopefully I'll get a good laugh and remember not to say the same thing to someone else.
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SuperMom101..Where is the info on prevention that might help these statistics go down...It's just not out there until they are blindsided...
I also feel that one of my strongest defenses is to control my diet with a healthier one......
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Day- Amen sister! What you described is exactly how I am feeling. I'm not going to say BC made me a better person. I was a good person to begin with. I was the one that looked the other way, swept it under the rug and forgave everyone for everything. Now I've decided that no one gets a free pass anymore. Life is way too short to put up with people that only bring negativity into my life. You're so right- quality over quantity!
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Day and Kate,
I'm right there with you! I used to put up with a lot of crap from people -accepted endless excuses for bad behavior. Now, I have very little tolerance and I don't think it's just a temporary phase. I feel a lot more angry than I used to, but it might really be a good thing. I no longer accept people wasting MY life with their nonsense.
Kate, your comment about "this is the time I need the most support but can't find it" really resonated for me. My family and friends act like I'm well and go out of their way to NOT mention that I have cancer. I'm in the middle of radiation, which is kicking my butt to the point I can barely function, so I feel FAR from well. I had a lot of support right after the diagnosis and immediately after the surgery, but then everybody acted like it was over. It feels far from over to me.
Thanks to everyone who posts on these boards - it's so comforting to read!
Karen
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Oh my, I certainly didn't mean that I let people walk all over me. I am more forgiving but I also don't let strangers, acquaintances, doctors, people on the phone or my staff waste my time or push me around. I was more of a push over before. I know I'm not really making sense now, but.....
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Fimi- I get what you're trying to say. You forgive those that truly deserve forgiveness.
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That's right. I'm more tolerant of ignorance and less of stupidity and thoughtlessness.
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One can remedy ignorance but stupid is forever!
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You can't fix stupid!
My DH looks at me sometimes like I'm from another planet, like somanywomen said to start this thread. I just tell him, "You know, I don't have to accept crap like that anymore. I don't have time for that sh*t!"
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