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How has your BC experience changed you

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  • Diana0418
    Diana0418 Member Posts: 1
    edited January 2018
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    I’m still changing, but it changed my perspective on life  and people in general.  Trying to not sweat the small stuff  & taking things slower. Healing is a long process, I need to give myself a break.   I’m also trying to change my diet.  Cancer affected my other health issues, so starting over. 

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2018
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    More than ever I rank kindness as the highest thing. I take care of myself now. I don't sweat the small bad stuff and I appreciate the small good stuff. I have learned to live and be happy in the moment and in today.

    And yet, I have a deep sadness for myself and others who will have to leave the party way too early, and for our families. I feel like an alien among people without cancer, and that is lonely.

  • runor
    runor Member Posts: 1,613
    edited January 2018
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    Well said, Shetland.

  • runor
    runor Member Posts: 1,613
    edited January 2018
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    You DO got this!

  • Pipandor
    Pipandor Member Posts: 130
    edited January 2018
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    Like many others here, I appreciate and value more than ever the present and the people who shouldered me through and beyond treatment. I also waste no time on relationships that aren't honest and caring. Breast cancer prompted my husband and me to retire a earlier than planned. After working 40 years, we are enjoying what I hope will be the first of many more years.

    I try to exercise daily, even if it's only a 20 minute exercise video. I've always eaten healthy. Now I have time to make more of our food and I make a point of taking vitamin D and C every day. I draw, paint and sing in a choir and try to do as much with friends and family as I can. I am dealing with the physical effects of treatment and menopause, but more and more as time passes, the joy of living eclipses the fear. I am thankful for every day.

  • BrandyJean
    BrandyJean Member Posts: 1
    edited January 2018
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    i was diagnosed in Sept of 2017. This is the fourth time, but this time it has spread to my lung area. I need to use oxygen 24/7. And that has changed. My life significantly. I also had to stop work. Another huge change. I started on ibrance pills, and flosodex shots, last month. I have had side effects such as, headaches, fast heart rate at times, curbed appetite, rashes and itching, being up over 24 hours, and or then sleeping 15 plus hours, not knowing. Need to take each day as it comes. I. Am off the pill this week and feel great. So I have decided to try and do shopping, errands etc more on the fourth week of therapy when off the pill. Trying to maintain a routine of walking daily, needing to bring my cart with oxygen in it. And a little dancing or xercise at home daily with oxygen turned up for breathing purposes. I am already overweight, and do not want to gain. Thus the appetite deterrent is one good thing about this pill. :). Let me know if anyone is close to where I am at with this breast cancer. Thanks Brandyjean


  • moderators
    moderators Posts: 7,911
    edited January 2018
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    Hi BrandyJean-

    We want to welcome you to BCO, and thank you so much for sharing your experiences. We're glad to hear you're having a good week!

    The Mods

  • jackster51
    jackster51 Member Posts: 139
    edited January 2018
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    What PerAngusta said.. minus the husband and kids !

  • runor
    runor Member Posts: 1,613
    edited February 2018
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    Today I popped a pea sized glob of Premarin estrogen cream up my hoohoo, and it was this HUGE mental hurdle to overcome. God, you'd think I was about to shove a stick of lit dynamite up there for all the agony I went through debating, researching and contemplating alternatives. All of a sudden every move I make in my life is framed in the context of how will this affect my cancer? I HATE THAT!

    Tamoxifen is having a wonderful effect on my lady bits and over the last several weeks things are getting increasingly annoying. It took a while to notice. Soap is a problem, dryness is a problem, pee dribble is a problem and then my hormonal lump flared up. Twice in the past 15 years I've had a gland in my vagina go berserk. It swells up and feels like my uterus is trying to rocket out. Like a tennis ball is lodged in there, trying to escape. It is a HORRIBLE sensation that makes it difficult to function and sleep. Well, lo and behold the glorious effect of tamoxifen has flared this hormonally triggered gland and it is slowly getting worse. I realized I am slowly getting more and more annoyed with my hoohoo, trying to get comfortable, yanking at my gonchies, peeing every 6 minutes until I realized, oh .. this again.

    That gland is almost instantly cured (in the past) with no more than 3 applications of Premarin cream. Sweet relief in a tube. But all of a sudden, wait, I can't use this! I have cancer! I have a hormone driven cancer! What if I use this .5 half gram dosage and it kills me? So I researched and read and laid awake all night worrying about it and then I got mad. HOLD THE PHONE! This is utter bullshit. There are pages and pages of studies saying that estrogen positive cancer patients should NOT use hormone creams because it is linked to an increased risk of cancer.

    Uh ... did I not lay on a table with a death ray pointed at my chest, nuking my heart and lung, when we all know full well that radiation causes cancer! I showed up for that tit burning exercise, but I'm going to flip out over a pea sized blob of estrogen cream? I take tamoxifen everyday which is on the list of known carcinogens, I have 5 years of that to look forward to. But a smidge of estrogen in my kooch is worthy of sleeplessness? And so, without even consulting my oncologist or anyone else medical, I put that tiny blob of goo as far into my nether regions as I could reach!

    Obviously I am NOT going to do this every day for the next 5 years. I will try 3 treatments and if things don't clear up then I will go to my doc and see if there's a plan B. But I resent that I feel I have to pass every little thing I do past my doctor, or get some medical person's blessing. This is MY vagina! I live with it all day, everyday and it is MY opinion of when enough is enough that will determine what I do, or don't do, with it. I hate that cancer has shoved me out of the driver's seat of my own life and I REFUSE to pass every damn thing past a doctor. It makes me feel fearful and controlled and I am starting to really hate it. I have lost all perspective. It's okay to get cut open, nuked and take 5 years of a drug that puts me at higher risk of cancers, but oooh, aahh, we should shake and quiver over a teeny dose of vaginal estrogen cream? Everything has become so stupid and I am tired of it and that is one way this filthy cancer has changed my life. It makes me feel clueless and fearful of every move. Well, today I liberate my vagina!

  • feliciascintillation
    feliciascintillation Member Posts: 145
    edited February 2018
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    I don't let most little things get to me, although I am no saint. I realize that many people are going through some pretty heavy "stuff" in their lives and I might not even know it so I try to give people the benefit of the doubt. How many times have I said I am doing well when that isn't truly how I'm feeling? I also appreciate that as far as the BC diagnosis goes, I am fortunate compared to many others-still I am more aware of my own mortality. I guess I've realized there is no right way to deal with this disease and I try not to judge others in the BC community. We all experience this disease from our own perspective.

  • Egads007
    Egads007 Member Posts: 474
    edited March 2018
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    I think I could take a snippet of every reply here and apply it to my metamorphosis going down this road. The one resounding change for me can be summed up with the word strength. So strong now, mind, body & soul. Very empowering

  • Egads007
    Egads007 Member Posts: 474
    edited March 2018
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    Runor - go for it! Stick it to the man....or wherever else it’s hurting! Lol...god I love your posts

  • marijen
    marijen Member Posts: 2,181
    edited March 2018
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    Excuse me? We have glands in our vaginas?

    Shocked

  • marijen
    marijen Member Posts: 2,181
    edited March 2018
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    Excuse me? We have glands in our vaginas?

    Shocked


  • Egads007
    Egads007 Member Posts: 474
    edited March 2018
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    Marigen...yes indeed we do. I also have a friend that had the same...I believe the condition is called a Bartholowmew gland (why the hell its namedafter a man I don’t know, they could have called it a Betty Gland at very least!) when it swells up like a ballon. My friend had to have 2 draining procedures. Check it out in google....better yet you might not want to. Shocked

  • marijen
    marijen Member Posts: 2,181
    edited March 2018
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    ROFL! Who knew? Glad I didn’t die before that bit of info. However, does anyone know about angioedema? It can swell up your privares as well as your throat and breasts. Keep ‘em coming runor, we need all the laughs we can get!


  • runor
    runor Member Posts: 1,613
    edited March 2018
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    Marijen, I am not at all sure that it is appropriate to laugh at my broken vagina.

    Happy

    Yes, there is a gland in there, I never did meet it in person so don't know its name. (why not Bartholomew?) But when it becomes angered and swells and touches the other wall of your vagina (which isn't much swelling at all, really) it feels HORRIBLE! The sensation is like a large round object wanting to get out. So gross and distracting. First time it happened a change in birth control pills calmed the angry gland and next time, years later, a wee little bit of estrogen cream did the trick.

    I am happy to report that my daring use of .5 of a gram of estrogen cream completely corrected my unhappy hoo-hoo. But I sure went through some mental grief to get there. God, when did treating vaginal disorders take on the same seriousness as swallowing swords? Good grief.

  • Egads007
    Egads007 Member Posts: 474
    edited March 2018
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    Runor...I hear ya..and I’ve considered doing exactly what you did in your brave deed if daring do! Alas I’m a chicken sh%#t. A chicken sh*%t with all the glorious va-jay jay gifts that tamoxifen so generously gives. Swallowing swords? More like a jousting match lol

  • marijen
    marijen Member Posts: 2,181
    edited March 2018
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    SadSorry runor, I wasn't laughing at your misery, just the whole ridulous situation we're in and Mr Bartholomew. Please forgive me.

  • runor
    runor Member Posts: 1,613
    edited March 2018
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    Bartholomew and I forgive you. But you have to bring us coffee and donuts!

  • marijen
    marijen Member Posts: 2,181
    edited March 2018
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    I made brownies, will that do? SillyHeart

  • Egads007
    Egads007 Member Posts: 474
    edited April 2018
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    Damn! I missed the brownies!!

  • monicabstrong
    monicabstrong Member Posts: 42
    edited April 2018
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    How has BC changed me...too soon to say I suppose but I'll revisit. I'm still sorting through what has transpired the past few months, but apart from myself I am acutely aware of people around me.

    My brother (only sibling and older) was really upset when I was diagnosed. But he never really said anything to me, his wife let me know. I wasn't sure how to reassure him, but we speak more frequently now. I send him pictures and let him know I am doing ok. We are a very close family, and I feel at this point much more aware of what we mean to each other. I believe it's important to let go of little hurts. I love and need my family, and look forward to taking a little more time to call or send a note.


  • Pipandor
    Pipandor Member Posts: 130
    edited April 2018
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    It's called a Bartholin gland cyst. I had one in my twenties and it made life pretty miserable until I had it surgically removed (outpatient surgery).

  • runor
    runor Member Posts: 1,613
    edited April 2018
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    Surgically removed ?!?! I am having convulsions just thinking about that!

    Today someone asked me how I was. I hate that question. I hate when I say "I'm fine" because I really don't feel fine. I feel hunted. All the time. I get on with my day, I do what I've always done. Everyone is acting as if life is normal, only I do not FEEL like life is normal. I've been ... shocked? Traumatized? Picked on? Statisticized? What am I looking for? A word that means one day you're just living along, minding your own business and the next day you get a piece of information that hurls you face down on the sidewalk of life. Everyone else is walking along like nothing happened and people expect you to get up and keep going too. AND WE DO! But we're not fine. No. Palms are skinned, knees are bleeding, chipped a tooth, and now we know that we can be tripped up and land on our face again - because breast cancer comes back. I appreciate the people who ask, I recognize they do so out of concern and to let me know that they are thinking about me. But the question itself has no good answer other than a lie. I LOOK fine, I DO fine, I am NOT fine. I am DAILY aware of my own death in a way I never used to be and in a way that has so far failed to produce the magical ,mystical, holy deepening of meaning that I hoped for. It just gives me anxiety and a sorrow that leaves me breathless. This is how BC has changed me. It has made me hate being asked how I am.

  • Egads007
    Egads007 Member Posts: 474
    edited April 2018
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    How cancer changed me (or how I spent my summer vacation 2013)

    I was sitting in the chemo chair, first infusion, when I tried to look for positives in the whole ordeal. At that very moment I needed something positive...desperately! I’d gone through months of diagnosis that included biopsy, 3 MRIs, 1 MRI guided biopsy, CT scan, marker placement(4) on the same day as the MRI guided biopsy, on and on and on with tests.

    Sitting in that chair I felt my sanity slightly slipping...like it wasn’t happening to me. I looked out the window and saw life going on per usual and burned with envy at the passers by...I wanted to be them again! That’s when it hit me like a thunderbolt. I decided then and there that I would no longer play the victim to cancer or to self pity, and that all the little joys in life that I previously overlooked would be my priority. That I wouldn’t sweat the unimportant things that I used to let get under my skin. How much precious time had I lost in the short time we have on earth getting upset about rush hour traffic, the annoying personalities at work, whether my clothing or nails looked good? Too much damned time! I quickly acquired a peaceful patience and the ability to embrace personality differences with a whole new perspective. No longer would the whole world be a half a glass...I set out to fill it to the rim.4.5 years later and I am stronger, calmer& laugh harder. I feel a little sorry for the passers by, watching them waste precious time worrying about the unimportant. Is it perfect? No. I have my days....but for the most part I catch myself and retreat to the positives I took from one of the most negative experience one can endure. Do I miss being a passer by? I’d be be lying if I said i didnt, but at the same time i’d miss the calm, patient strength I’ve gained through it all. I guess everything has a price to pay. That’s life....emphasis on living.

  • vl22
    vl22 Member Posts: 471
    edited April 2018
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    Egads007 - I love your post! I’m coming up on a year since my diagnosis and also some blood work and a mammogram, which makes me nervous. However, I share your attitude about not wasting a moment. Truthfully, I didn’t need a wake up call to value my family and friends - I have always cherished my life. Yet we’ve made a more conscious effort to simply be together - vacation, board games etc. I think we value one another even more.

    Yes, I get angry, scared etc, but I won’t live like that - I refuse. Yeah, it’s not fair - so what? I can do nothing about it. I used to wonder what I could have changed to not get this - what a waste of life.

    I will strive to be happy every day and not sweat the small stuff. The people I love will never doubt it.

    Also, I used to have a huge fear of flying. This experience has squashed that!😀.

  • Egads007
    Egads007 Member Posts: 474
    edited April 2018
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    VL22 - you’ve convinced me you’re not going to sweat the little stuff, atta’ girl!!

    Strangely enough I’ve had the opposite reaction to flying...I’m now petrified if it lol!!! Every little bump and I’m screaming inside my head “omg I’ve survived cancer only to go down in a burning explosive flame” it’s tge only time I ever say ‘why me?’ anymore LOL!

  • coachvicky
    coachvicky Member Posts: 984
    edited April 2018
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    New to this forum.

    I went clothes shopping on Tuesday. First time since diagnosis in June 2016. Somehow, this seems like a big deal.

    Coach Vicky


  • notbrokenjustbent
    notbrokenjustbent Member Posts: 326
    edited April 2018
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    I use to think bad things only happened to other people. Now I know differently. BC and other recent events have made me far more fearful and I think much about potential dangers looming over me and my loved ones. I also never thought about death and likely thought that too only happened to other people. BC has forced me to accept my own mortality. On a happier note, BC has brought me much closer to some. Now I know who has my back and those who don't.