THEY HAVE NO IDEA!!

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  • jteach
    jteach Member Posts: 199
    edited July 2010

    How sad that we all feel the same, but how wonderful that by reading these posts we know we are not alone.  I wish we could have a real, physical group hug.  Nobody else gets it.  It makes them uncomfortable.  Or they're just clueless.  I don't wish this on anybody, and truly ladies, that IS the only way anyone could understand.

    (((HUGS)))  Janice

  • somanywomen
    somanywomen Member Posts: 872
    edited June 2012

    Coolbreeze,

    jrgolomb, I have one of those 19 year olds, when I first told him about this bc nine months ago, he surprised  by saying "Mom, I know a lot of people with cancer and they are fine!"...He proceeded to tell me about several people which included his boss's wife, I was floored, we have known her for many years, she's young, vibrant, beautiful and works very hard in the restaurant business..When she saw me after my dx, she came over and gave me a hug and said "you will be fine"...She had her cancer over 7 years ago and she went through a really tough ordeal...She gave me hope and made me feel so not alone...

    brendaskids, I chose not to do chemo, my oncoscore gave me a 2-3% benefit (only 2 or 3 of 100 women with my medical math results would get the positive results) I changed my diet to anti-cancer one and hope I made the right choice....Yesterday when I had my hair colored, first it was too light and the second try it is too dark, I found myself thinking about all of you that would love to have that problem and it just didn't seem to matter.....

    jteach...it is a lonely feeling, but coming here does help us not feel so all alone as you said...

  • Titan
    Titan Member Posts: 2,956
    edited July 2010

    When I was going through treatment I too was treated as "special"....my co-workers were waiting at the front door of the office when I walked in from my last treatment...with balloons, cards..I was overwhelmed...now almost a year later it is like it never happened...I'm treated like everyone else (which is a good thing)....but it is just weird!

    Another thing, wanted to see if you guys felt the same way..I was out with friends last night...there were six of us....I'm quiet now and I never used to be quiet..I noticed that 2 other women were quiet too..one who had BC 10 years ago and one whose son was killed in a car accident 6 years ago.  The other 3 were laughing and having a great time....I wish I could let myself go like that...will I ever be able to just go out and have just PLAIN FUN...or is that gone forever?

  • somanywomen
    somanywomen Member Posts: 872
    edited July 2010
    Titan, I too am looking to get the fun back..I have always been the fun instigator, but I find myself being more reserved..(your observation of friends is eye opening, those with loss)...I think I may be afraid to get that comfortable again, that I might get blindsided..I know my husband misses that part of me and hopes I will find my way back to me...
  • meggybb
    meggybb Member Posts: 6
    edited August 2010

    I too am having a hard time finding the fun in life.  I've read other BC survivors who write about a having a new zest for life, better relationships, becoming a stronger person . . . but that is not happening for me.  I feel very detached from my friends and feel alone most of the time.  Actually, I am alone most of the time.  I've become very insecure and worry about every little thing, not just cancer issues.  I never want to do anything because I can't find anything that interests me, but at the same time I am bored to tears. 

    I exercise everyday by walking or hiking however I have to force myself to do this.  I've been putting on the brave, positive face for the world to see and have been told numerous times that I am an inspiration to others.  That makes me feel like such a fake because inside I am a mess.  My husband is the only one who sees my tears, anger and frustration and like you said Somanywomen, I know he misses the old me and wonders when I will be back.  I wonder when or if I will be back and if will life ever be fun and interesting again.

  • somanywomen
    somanywomen Member Posts: 872
    edited August 2010

    meggybb, your quote..." I never want to do anything because I can't find anything that interests me, but at the same time I am bored to tears."...sooooo true.....

    It's like, if we stay in this boring world that is mostly fear of recurrence, somehow we will be better off...I guess it's time to take a deep breath and try to think positive and go for all the gusto and live life again....I was not looking forward to a trip to Las Vegas and then on to San Diego in November, then I realized that if I didn't start looking forward to upcoming events how much I would miss out on...So, to my husband's surprise, I added in a side-trip to Zion National Park while we are in Vegas...(My son went there last year and his photos are so beautiful) I am going to try to walk the trail up Angel's Landing and I think I am actually getting excited about it...I can't let "waiting for the next shoe to drop stop my living in the moment"...Hope this is not easier said than done...but I am going to give it my best shot!!!

  • iodine
    iodine Member Posts: 4,289
    edited August 2010

    Hey Meggie, I know some of how you feel.  I chose to talk with a professional.  A psychologist, I didn't need a shrink, cause I'm not mentally ill.  It only took a few visits and I found some light at the end of the tunnel (that was NOT an oncomming train) and slowly began to follow some of his suggestions.

    It made a huge difference.  I, too, played superwoman--telling everyone that everything was fine and knowing how much I was lying. 

    Just a thought.

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    I don't think anyone can really understand unless they've personally been told "You have cancer". Those words change your life and there is no going back. This is our normal now. So we're moving forward, being positive, getting on with it, and all the while, waiting for that other shoe to drop.

  • Valjean
    Valjean Member Posts: 1,898
    edited August 2010

    I can so relate to what some of you have said: I do find that I am more quiet. I just listen ~ and sit ~ some friends have commented on how quiet I am & that they hope I am okay. I'm NOT okay!! I worry every day, I try not to, but this SFBC is ALWAYS with me, like a ball & chain.

    I am so amazed how at one minute (like when I am playing with my grandchildren) I feel so happy & positive & then at the next moment (like when I am hugging my grandchildren), I am near tears!

    I want to be away from this, but I'm scared to even think about the future.

    I just had my 4 month onc check-up, everything is good, bloodwork is great. I cried when I got out to my car; I should have been happy, but it made me sad to think my life revolves around those appointments.

    My DH just tells me, "You're doing fine. They removed the cancer." Yes, my dear husband, but it COULD COME BACK !!!!!  One of my DD's never mentions it at all & my other DD does ask me how I'm doing, really how I'm doing and I just tell her I'm doing good; I don't want to worry her.

    So, how do I find myself back to me?? 

    Thank God I have you sisters here that truly understand what I feel.  

    {{{♥♥Love & Hugs♥♥}}}

       

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited August 2010
    Valjean, SoManyWomen, Bon, Iodine, Titan, I soooo relate to what each of you is saying and I have felt the same.  I think there is an incredible sadness that comes with a BC Dx that only we understand (which is a good thing).  and there is mourning for our loss that is very real.  My PCP Dx me with PTSD - related to BC and almost dying a few times in surgery.  I started seeing a psychologist and it has helped a lot especially as my 'cancervary' is coming up.  I am very strong and put together on the outside but sometimes I am just torn up inside...but that's ok...I think it is a 'normal' part of grieving.  One thing I do hate though are the 4 month onc appointments.  I just had my first one and now I am a NED -- No Evidence of Disease ... I never wanted to be a NED!!!  Tomorrow I see my gyno and PS...does it ever end???  Ahh...this too shall pass.  On Saturday I am off to California to see my brother and my nephewSmile
  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    Brendaskids, They say that "what doesn't kill us just makes us stronger...". Looks like you've been through the an awful lot. And getting to the point of NED , like it or not, is a victory, Cancer just sucks, period. We're in this 'sisterhood' we never dreamed existed and never wanted to take part in. But I'm so glad we've got this series of boards to help us learn from each other and get through it together. Hell and Well rhyme. We just have to crawl through one to get to the other.

    Enjoy your trip to California and your time with your family.

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited August 2010

    Bon,

    Thanks!  You're a poet!  Did you know it!  I'm all for crawling or whatever it takes!  I will enjoy the trip.  As my PCP said ... that's what life is about.  He just lost his wife last year to ovarian cancer so he has been incredibly kind and understanding.  I think it's hard for him to see me but cathartic too.  He discusses the stages of grieving with me and he really gets it.  We are a sisterhood!  I never had a sister and now I have many!  Thanks and God Bless! 

  • DiDel
    DiDel Member Posts: 1,329
    edited August 2010

    Oh my gosh I completely agree with everything. I am so trying to get out of my lonely bored funk but unfortunately I am so busy with work and catching up from everything I got behind on during chemo. One thing I realized in these past 8 months is that I actually was the social coordinator of my group of friends. They've been just as bored and lonely as me LOL! I put out an email rallying the troops and arranged a dinner party for the group next week to celebrate my first successful NEGATIVE mammo and 3 month checkup!! Waaahhhooo. I'm trying to get back into it but feel like till I am unburied from work I just can't get back into my old routine with workouts and friends...baby steps...i guess. Soon enough it will be a year since diagnosis, to me that will be my benchmark for putting things behind me and coming here to vent!

    Have a great evening everyone!

    Diane 

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited August 2010

    DiDel!

    Baby steps or even crawling (as Bon suggested) work great!  You go girl!  Even if it is slow!

    Brenda 

  • 5andcounting
    5andcounting Member Posts: 232
    edited August 2010

    Titan-I used to be the "fun one" in my group. Even through chemo and rads. It's only now, coming out of the forest, that I'm a little more reserved, drink a little less, think a little more. I think it's the loss of innocence.  We all know that one day things can be fine and the next day, an anvil falls out of the sky and hits you. Thankfully, the chances of that happening again are not very high but they're still there.  I have to plan little mini "events", vacations, parties, whatever, to focus on in order to distract myself from the anxiety monster.  Which, sadly, seems to visit me around 1 a.m. when I need to be asleep!

    I've also started volunteering to get the focus off myself and concentrate on the good around me. Sometimes it works, sometimes not so much. Last resort is still chocolate....

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited August 2010

    crs319

    I know what you mean by the anxiety monsters at 1 AM!  Go to bed!  I'm going to as soon as I go eat some chocolate... 

  • heartnsoul76
    heartnsoul76 Member Posts: 1,648
    edited August 2010

    somanywomen, you wrote: It's like, if we stay in this boring world that is mostly fear of recurrence, somehow we will be better off.

    For me, that's almost right but not quite. I think my choice to stay in my lonely world worrying about recurrence is not because I think am somehow better off, but because I think I am somehow better "prepared".  Researching and consuming every bit of knowledge I can - it's like worrying about it keeps me on my toes so it won't sneak up on me again. I need to throw away that attitude, and try to be the old carefree person I used to be before bc. Yes, I'm definitely mourning the loss of that person, but I think if I practice it enough, maybe one day I'll be able to fool myself into believing it for a little while, and that's enough for me. Because that cloud hanging over us will never go away - other people don't see it, and I guess they really shouldn't. So, we either have to put on a happy face or cloister ourselves away. I think I'm going to try pretend soooooo hard that I don't see it, either. Oh, boy, I think I'm already cruising down de Nile again, and I'm just starting chemo. Sealed  But, that's one good thing about having ADHD - LOL!

  • somanywomen
    somanywomen Member Posts: 872
    edited August 2010

    heartnsoul, I do spend a lot of time, esp., mornings doing research, I have changed my lifestyle in many ways since dx, my diet being the biggest change..I try to follow as much of a anti-cancer diet as possible, I even changed to non-chemical products on my body and walk about 8 miles a week...To date, I have lost 15 lbs, raised my vit d levels from 28 to 45 and dropped my cholesterol from total 232 to 200...I have really cut back on alcohol (wayyyyy back), so I do know that being proactive can at least make me a healthier person if I ever have to face bc again..My mental state has been slower at showing positive results...Like I said earlier, I was the one to get the party started, now I wait for it to happen...

    Bon, I grew up in Ft. Pierce and one of my best friends (since High School) lives in Vero...I'm up here in Merritt Island....

  • Rudy_3rd
    Rudy_3rd Member Posts: 5
    edited August 2010
    You're right.  One of my favorite line (Jimmy Hendrix did this one, too).  "THERE MUST BE SOME KINDA WAY OUTA HERE SAID THE JOKER TO THE THIEF...THERE'S TOO MUCH CONFUSION...I CAN'T GET NO RELIEF".  I used to sketch and draw and used that in one of my drawings.  It describes exactly how I feel.  I just can't decide if I'm the joker or the thief Laughing.  Another one is "After all the jacks are their boxes, and the clowns have gone to bed.....".  I've kept working (other than 3 weeks off after masectomy 10/09, a week after a dog bite during chemo, and then it got infected and I had to go into the hospital for IV antibiotics.  Then my emloyer put be out on STD.  Came back exactly 2 months later to a complete new management team and now feel I'm being "phased out".  Guess when you're "upper 50's, nobody wants you...Frown
  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010

    Somanywomen...OK, a BC.org buddy close by.  I see many posts on this site from the mid and far west, but not too many from Florida. I ended up with a BS in Stuart, am having chemo in Ft. Pierce and will get rads in Stuart, too. Not one surgeon in VB specializes in breast surgery. Not ONE!  I feel blessed to have found my 'team' within a 45 mile drive. I see so many women post that there drive is 8 hrs or more, round trip. Amazing.

    I'm not at the point where I'm following any thing that even remotely resembles a healthy diet. I'm still fighting with the metal/bug spray taste in my mouth so anything that squelches that and stays down is it for me now. I say 'bring on the additives, food dyes and flavor enhancers'. When I get past the chemo and maybe during radiation, I'll address a diet plan. But which one? I've been told to stay away from all soy due to it's estrogen-like properties, and I'm so highly sensitive to it anyway that it's impossible for me to eat anything with soy in it without suffering incredible debilitating diarrhea. I've been told by my onc to avoid fresh fruits and veggies while immunosuppressed, especially in restaurants. I did get a major salad spinner and wash lettuce with a bit of Clorox, rinse well, and take my chances at home. Organic isn't safe...heck, look at all those people who died a couple of years ago when the ground water was contaminated at an organic spinach farm.

    For me, at this point, 'healthy' eating is a myth. So is exercise. I can bearly stand up for 8-10 days after the tx and then the next 5 or 6 are 'at risk'. I'll do both later on...my physical and spiritual renewal comes when I'm done with all this cancer 'crap' and can focus on being me again.

  • bonniewe
    bonniewe Member Posts: 42
    edited August 2010

    I have read everyone of your posts and am sad to read that others have the same experience.    I flipped out 2 nights ago at my DH because I heard him tell a friend of ours how many radiation treatments I had had and how many total I would have.   He had both numbers wrong!    And, it did not help that 10 minutes prior my mother, who I have told several times I have to have radiation everyday, said "oh, you have to go to radiation again tomorrow?".      How can two people who are supposed to love me not know, not understand something so simple?     I have learned through this that those who have not been directly impacted (had cancer) cannot KNOW how it feels, how the cancer terrors can wash over you.   But I have also learned that eventhough I now know how I feel and how I want to roll up into a ball and hide in the corner at times,  I cannot KNOW how someone else who is also going through cancer actually feels.   I can only listen, give support, physically and emotionally, and ask them how I can help.   Perhaps they will then do the same for someone else, and yes, perhaps even for me.      All of you ladies are amazing and I'm so sorry you have to be here.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited August 2010

    Oh sisters. I am right there with you. When I saw my onc the other day, I sort of mused out loud: 'Will there ever be a day when I don't think about cancer?' He said after a year or so, it would happen. HOW DOES HE KNOW??? How could he know?

    I am so grateful to have all of you to turn to when I can't put even one more foot in front of the other.

    Thanks.

  • somanywomen
    somanywomen Member Posts: 872
    edited August 2010

    Bon, I totally understand....Had I done chemo, I might be thinking same as you...Since my oncoscore was only a 2-3% positive effect if I did chemo, I chose not to do it....We never know if our choices are the right ones so I am trying to make-up that 2-3% by diet and exercise.....I know what you mean by tastes in your mouth, I have always been extra sensitive to perfumes, cleaners, etc, they seem to attach themselves to my taste buds...I can hardly be around my mom, she has so many chemicals on her (hairspray, perfumes, lotions), I can only imagine the chemical effects of chemo...My onco doc and BS were here in Merritt Island, but I chose to drive 45 mins for rads (IMRT System)...Wishing you the best....

    FYI....Edited to say that if any of you are into eating healthier....Never, Never, Never do what I just did!!..I added broccoli to my fruit smoothie!!!!.....Not a good idea!!!!

  • kane744
    kane744 Member Posts: 461
    edited August 2010

    How could they possibly know unless they've gone through it themselves.  The best they can do is "imagine", which isn't even close to the same thing.  The best they can do is be there for us during the worst of it.  My dh felt so lost during the entire journey.  He was so afraid of losing me yet he couldn't express it to me until a year after treatment ended.  He felt he had to always be "up" and "positive" for me; to try to give me his strength.  Do you think that's an easy thing for those who love us and travel this journey with us?

    My dh, along with two others, started a group for spouses, significant others, family to help them learn from their experiences.  Now that's a fantastic way to direct negative energy and turn it into a positive one.  I am proud of him for taking this on. 

    After I ended treatment I had a real hard time.  It's like all of a sudden there you are, on your own to try to climb back to where you were.  Didn't feel at all like I used to. Don't expect to.

    Next month is my two year cancerversary.  Am I back?  Nope.  It's another me that's emerging.  Not necessarily better or worse, just different.  I think of cancer every day.  If only I didn't, I'd be grateful. 

    Then three months ago I got lymphedema.  Well, that sure is taking my mind off fears of cancer returning.  I was feeling those same feelings I had when diagnosed with bc--the anger, the helplessness, the fear.  Now another "new" me is emerging.  I have learned how to take care of this dreadful condition and to adapt my life to its limitations.

    It occurred to me the other day when the heat and humidty caused my arm to swell like a sausage and I felt my spirit descending into that "why me" mode.  Throughout our lives we are constantly changing, adapting, growing.  We never stay the same.  How could we?  So when the cancer battle is over, can we really expect to be what we were before?  What we can do is turn a negative into a positive.  We can help sisters going through this journey; help their families by explaining what it feels like to their loved ones.  Otherwise, how can they possibly know.  Because when going through it, most of us are pretty centered on how miserable we feel to think of trying to explain it to those traveling this road with us.

    Peace and strength, sisters.   

  • somanywomen
    somanywomen Member Posts: 872
    edited August 2010
    kane, I think with bc the self-centered frame of mind is just a fact of bc life...The other night my dh said to me "I know that your toes are numb (I think from arimidex) and you are still sore (surgery side, 9 months later) but I want you to look at these white marks on my arm and back"..I did and said those are wierd, when did you notice?..He said just then after my shower, I got a closer look and noticed they seem to wipe off, when I told him this he was so relieved, he said he must have rubbed up against the cleaner that he used on his shower....It was so funny.....I guess he's been afraid of mentioning his own health concerns to me lately and when he finally does, it is just too funny...
  • kane744
    kane744 Member Posts: 461
    edited August 2010

    somanywomen, laughter kills cancer cells!!  I know my dh has held things back from me so as not to "worry" me.  But after 28 years, I can always tell when something is bothering him.  Hate to tell you this, but I'm still sore almost two years later!  Am now in PT to try to build myself some muscles but have to take it easy cause of the lymphedema.  We just have to keep on keepin' on. 

  • coss
    coss Member Posts: 48
    edited August 2010

    As far as my family's concerned, I HAD cancer, went through treatment, and am now "cured."  I can see in their eyes that they need this to be true, and I hope it is!  So I keep quiet about my 24/7 cancer thoughts and when I need reassurance that I'm not crazy I come here and read.  Thanks ladies.   

  • mumito
    mumito Member Posts: 4,562
    edited August 2010

    Coss you will not be suprised how many of us can comiserate.

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited August 2010

    I wish they would take that darn '5 Year' thing out of everything published about breast cancer.  Sure, I was doing the happy dance at the 5 year mark, even I was convinced I beat it - now I am doing the mets shuffle at the 10 year mark. 

    I have friends that continue to tell me that I am going to be ok.  DUH...this isn't the flu.  Even my very understanding, supportive and compassionate family does not fully realize the impact but I love them dearly for trying!

  • PearlGirl
    PearlGirl Member Posts: 549
    edited August 2010
    I started freaking out this week about the possibility of getting a different form of BC in the future. Am being treated for ER,PR negative, Her2+. Now find out that I still can end up with ER,PR positive BC in the future. Nothing is guaranteed. And with more 'targeted' therapy it only covers the cancer of the day. UGH! Until now all I was worried about was mets...huh, did you catch that?...I said All I was worried about. I'm worried about everything, Will I ever stop waiting for that other shoe to drop.  Right now after every chemo round, I call that first week my 'shoe dropping days'.  I swear that after my current schedule of treatments ends in June 2011 I'm going to write a book called My Shoe Dropping Life.

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