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I know I cant be the only lesbian out here?

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  • cancersucks
    cancersucks Member Posts: 100
    edited October 2010
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    Book,

    Don't be to hard on her sometimes partners forget what we've been through, actually most human beings in general, they think once the treatment ends there is no real worry. I just wanted to send you a random hug and tell you that tomorrow is another day. You could always write her a letter and let her know how you feel, that's just my two cents.

    Hope everyone is doing well and getting out there, taking in the cool breeze,

    Have a good weekend Ya'll!!!!!!

  • bookart
    bookart Member Posts: 210
    edited July 2010
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    Thanks, CS!  I'm too tired to write tonight, but wanted to respond.  Every other day I want a divorce, but fortunately, I know it's fleeting.

  • GML
    GML Member Posts: 46
    edited October 2010
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    Hey all, hope everyone is well!  Wanted to share that my partner and I, along with friends, did the Making Strides for Breast Cancer walk yesterday.  Over 3,500 walkers and over $240,000 raised for research!!

  • bookart
    bookart Member Posts: 210
    edited October 2010
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    Fantastic!  I hope to do the local walk next year - too out of shape this year.

  • phew
    phew Member Posts: 143
    edited October 2010
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    i am going to walk/march as well--i've had uterine, coupla brain and new brain cancer to be contended with.  this is the only one i have ownership of....the others were just owies.  this is valuable l....also .i know size mattters and recon happ lots amwell not men but cultural prssure?ongst hets, and it is often the men that drive their choices.   wonder is that the case in our pop.?     just wanted make contact with lezzies   our experiences are diff even if they are the same   hi to all!

  • cancersucks
    cancersucks Member Posts: 100
    edited October 2010
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    Welcome ...hmm lezzies......um.sure, okay swell. Let's go with dykes or something else not politically correct. all are welcome here but no bigots!!! This is an anti bigot zone, so phew, we welcome you, your cats and your dog.

    Just giving a friendly wave to everyone. It's Leaf peeping season!!!!!!!! Hope everyone is feeling good, kicking ass and taking names!

  • phew
    phew Member Posts: 143
    edited October 2010
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    woops i wrote a response, but now cannot find it  hhmmmmm          i was pointing out how geography is also cultural.  i wouldn never  use a word to describe myself that is any form of self hatred         so besides being a lifelong lesbian who has recently had surgery for cancer in one of my breasts, i was wondering if recpnstruction to return to the original size is as common in the lesbian commynity?   my neighbor had bmx, hadd been a DD cup size , had recon. cuz that was the size she was when she mmarried her husband...his term was this is not the  chese i married........a woman around thea  the corner had 1.5mx  (huh? & WOW!) got recon. and they got infected and left her deforme and in  chronic pain.   i dont want any extra ssurgeries than is nec, so this cinfuses me......anybody, anybody?

  • bookart
    bookart Member Posts: 210
    edited October 2010
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    I hope that was " the chest I married," not "the cheese I married", although either statement is so callous and dis-regarding of the woman attached to that chest/cheese.  Bummer for that woman.   Tongue out 

    I believe we discussed earlier in this thread that some lesbians also choose reconstruction, but others do not - for various reasons.  And I personally believe that hetero women are not necessarily more body conscious than lesbians but do know that they have to visually/sexually appeal to men, who are much more body conscious.

  • phew
    phew Member Posts: 143
    edited October 2010
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    thx!     yeah cheese is read chest....bad tremeor from brain sureries and impaire eye site, so my typing is jusst simply silly...ya gotta laff, what else is there.....entertainment that vver ends   again thinking the les iam under a kniff the nore comfrtabl i am, so i fortog to considr the sense of righedness, of belong like others, thanks for making me think book!

  • phew
    phew Member Posts: 143
    edited October 2010
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    thx!     yeah cheese is read chest....bad tremeor from brain sureries and impaire eye site, so my typing is jusst simply silly...ya gotta laff, what else is there.....entertainment that vver ends   again thinking the les iam under a kniff the nore comfrtabl i am, so i fortog to considr the sense of righedness, of belong like others, thanks for making me think book!

  • bookart
    bookart Member Posts: 210
    edited October 2010
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    No problem, phew, I had the same questions when I first hit this site - why was reconstruction so important to so many women?  But as I spent more time reading posts from hetero women at the same timeline as my dx and surgery, I could see where they were coming from.  It's not for me, but I can see where it might be important for others.  And some lesbians weighed in and said reconstruction was important for them, too.  Each to their own - my reaction was like yours, though - why go through the extra for numb blobs of fake flesh stuck on your chest?  And sorry for jesting about the spelling - but I did read it as cheese first and got really confused!  Took my soggy brain awhile to figure out it was chest. 

  • phew
    phew Member Posts: 143
    edited October 2010
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    where oh where did my little posst go?

    somewhere in the netherworld   (sorta like my acculation of knowedgelessness) 

    anyway, bookaart, i wanna say thank for insight  AND re my typing and letter salad   i laugh every time i appraocg a ketnooard or pencil    my writing iis so ssilly  it is lmoost al unintellligable AND THAT AFTER PROOFREADING!!  so, laugh away   apparently we need a lot of that

    (just found out about chemo and what that entails)  seems laughter is just the hoot we need 

  • phew
    phew Member Posts: 143
    edited October 2010
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    site all gone?

  • bookart
    bookart Member Posts: 210
    edited November 2010
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    Sure seems so.

  • JustJean
    JustJean Member Posts: 170
    edited November 2010
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    I really need to check this forum more often. I wish that there were more of us who were active on this forum, more of us who could understand what we're going through as lesbians.

    Welcome to the forum, phew... glad to have you here!

    JJ

  • phew
    phew Member Posts: 143
    edited November 2010
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    another belated post.....i stopped stopping by cuz it seemed others stopped stopping by.....bad cycle huh?.........just talking with friends, we all ashkenazy jews...they dont want to find out if they have the mutation:  "well nothing i can do about it anyway"  and i'm all reight....i get annual mammograms , so....       and these women are nurses and PAs.           truly they said wel, i live a healthy lifestyle  am a lessbian so  &  dont have kids              gotta adit, i was flzbbergasted.  having had no kides at our breast or in our wombs, and the brca thing, makes us more susceptable.              i felt as if i was in a conversation 30 years ago that went:  well i didnt think s/he had aid:  they looked healthy             had to vent thanks             oh yeah, age groupps etco, i never paid attention to how many venues and populations and organiztions and performers etc  just saw a cute one http://www.youtube.com/watch?v=cfRSDbV8Adw
  • bookart
    bookart Member Posts: 210
    edited November 2010
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    That is amazingly stew-pid of your friends, I think.  It reminds me of the research that recommended that women wait until 50 for first mammogram.  Think of how many women on this site are under 40 - and because they didn't have early mammograms they are already stage IV.  Not their fault - no one expects it that young, but past 40 - you bet!  I can understand the head in the sand stuff, but if you can do something about it, if you can live longer or have better quality of life, why not find out?  And not having kids makes us HIGHER risk, not lower.  Plus the Ashkenazic factor makes it even higher risk.  Nutso-cakes.

  • phew
    phew Member Posts: 143
    edited November 2010
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    amazing huh?  cant wrap my head around that eitherCool<----my stewpid head friends!!
  • levyaddison
    levyaddison Member Posts: 1
    edited December 2010
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    Count me in sisses.

  • Malta59
    Malta59 Member Posts: 3
    edited February 2011
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    Greetings all....I'm still here.  Haven't posted since my initial one back in May 2010 (page 8).  Have come to the site often and it continues to provide wonderful support and information, so was a bit disappointed to see the last post to this group was in December.  Although many other topics provide excellent information and support, this is where I started and got the most support from so wanted to post here as a "thank you".   So bump, there it is.....

    Lots (obviously) has transpired since my initial (and only) post, so please bear with me if it is a bit long.  As I come up to the (1st) anniversary of my diagnoisis, wanted to share the news.  Some not so good, but more good.  First the not so good, cause I want that out of the way and, thankfully, it's the lessor of the news.

    To refresh my scenario:  Diagnosed 25 Feb 2010.  Mastecomy (left breast) 26 Mar 10.  Mets to the lungs diag 29 Apr 10. 25 May 10, began Endokrinen (Hormone) ttreatment with Tomoxifen and Goserelin (Zolodex) which apparently didn't work for me.  Three months after starting this course, the control PET and CT scans showed mets in the bones,which had been completely clear 3 months prior as well as further growths in the lungs.  So my docs (much to my initial dismay) decided I needed to travel down chemo road which I started in Sept 2010.  Called for 6 cycles of Paclitaxel and Bevacizumab (Avistan), plus what I call the "cocktail" of the 3 anti-side effects meds (Dexametason (Fortecortin), Ranitidan (Zantic) and Clemastin (Tavegil)).  Each cycle consists of a treatment every Monday, for three weeks, a week "off" then start again.  NOTE:  If you haven't noticed (and I haven't said before) I am very fortunate to be living in Heidelberg, Germany although I am British. That's why some of the names of the meds are maybe a bit different to what you are used to seeing, but I've tried to provide the generic/trade names when I can.  DIGRESSION:  I say fortunate to live in Heidelberg for more than one reason....not only is it a beautiful, historic city, it is also the home of the one of the best Cancer Treatment and Research Centers in the World, the University of Heidelberg, Frauenklinik and National Cancer Treatment Center.  Not to offend any Mayo or Harvard patients, even my team tip their hats to those.  But as far as I know and believe, on this side of the pond, this Health Care Org ranks up there and I want to recognize them accordingly.  Moving on....

    On to the good stuff.....

    On 18 Jan 11 I had my control CT and tests.  On 25 Jan the "big" meeting with my Oncology team. Not sure what I expected, went there expecting the worse, especially considering my previous progression and starting out at Stage IV.  With somewhat of a surprise, what I heard was "stable".....Surprised.  While my team went through all the findings (mix of German and English) all I could think about was "what's next?".  At the time, in my mind, I'm thinking "one more cycle and then what?"  Back to work, stress, adjusting agin to a different routine.....what kind of meds, what about maintenance, what if I stop chemo and everything starts to grow again, etc., etc.,  As I'm sure many/most of you have already experienced that, I won't go on.....

    While I know I should have been celebrating the news, it's not like you're being told you're cured, NED, or ???? It's kind of a status quo.  Definitely better than some alternatives, so please don't misunderstand.  It is a big "yay" when it sinks in.  Smile

    So while yesterday was actually the last of the 6 (originally) planned cycles.  I say "originally" as my team has decided that as they haven't taken me (yet) to within an inch of my life and existence and as I am (apparently) tolerating and responding "well" to the treatments, let's continue for (at least) another three cycles and add another med to the mix.  They will now be adding Zolendronat (Zometa) to the infusions to try to combat the bone mets (or at least help with it).   Have to admit, not really looking forward to that, as I've heard the SEs can be quite harsh.  But, I'm willing to have a go as I trust the team and how they've bought me this far.  

    There's a lot of other "things" that have helped bring me to this point (alive and relatively well) to include friends, co-workers, family, the love of my life (another story both complicated and inspiring that gave me a reason to live) and this group.

    As I begin the next cycle on 28 Feb, I hope I continue to do well.  Again, appreciate all the folks who continue to share and inspire.  Hope I haven't bored you will this long post.  Till next time... 

  • bookart
    bookart Member Posts: 210
    edited February 2011
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    Good to hear from you, Malta.  May your SEs be minor and your mets shrink. 

    I miss folk on this thread.  I'm surrounded by straight folk in my life and work; it's nice to talk about the few issues that are different than for heteros.  Certainly BC is BC, but I have some weird issues with it just because I'm a lesbian.  I need to talk to other lesbians sometimes!

    Take care, everyone.

  • ljocef
    ljocef Member Posts: 3
    edited February 2011
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    Hi,

    I just joined the site a few days ago and just started poking around in here and found the lesbian spot here!  This is great to have a place just for us because, like you said bookart, we are surrounded by straight folk everywhere, and there are certain things with BC that are different for us.  One thing for me is trying to relate to my partner of 19 years.  She's been there for me at every appointment, but I need more of her emotionally.  I just don't think talking to a straight woman with a husband would do me much good.  Anyway, it's nice to meet you all, and I hope to hear from you.  

    Take it easy! 

  • bookart
    bookart Member Posts: 210
    edited February 2011
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    Lisa - I've been lucky that my partner has been pretty good - there's been times of less support, or not how I want it, but it has definitely smoothed out recently.  It's really hard to figure out what I need, express it, and then get it - and then how to re-express if what i get isn't what I really need.  It's a bitch.  And what I need seems to change, making it even harder.  I don't have an answer, other than communicate, communicate, communicate.

    My issue - I'm fairly androgynous, and I've been "sirred" all my life, even as a young teenager.   My voice is lower, my body is not terribly feminine, and even when my hair was long I've been mistaken for male.  It's never bothered me - but after a bmx, it started to bother me.  I've actually grown my hair out some so that I appear more female.  It's odd to me that after a lifetime of being comfortable with my ambivalent gender identity, I'm feeling so odd about it now.  It's started to fade a little bit as I get used to my new "normal" but it's still an obvious issue in my psyche.  Anyone else?

  • JustJean
    JustJean Member Posts: 170
    edited February 2011
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    Oh, it's so good to see people posting in here again!

    I had my BMX last May. I identify as "on the femme side". I tried implants and omg they were horrendous. They came out three weeks later. Now here I am almost nine months later and I still can't wear the falsies because they are too heavy - my chest is numb and there is chronic pain where the bra would go so I go without anything. Since I'm over six feet tall, I get a lot of people looking at me and wondering if I am a man in women's clothing - the extremely short post-chemo hair and the flat chest and the height obviously confuses them. I hate it but don't know what I can do about it. Even if I got some of those micro bead inserts, I still have to wear a bra and that's just not going to happen.

    Hello to whoever is reading this. I hope more of us start posting. It would seem a little less lonely to be able to talk to others like me...

    JJ

  • ljocef
    ljocef Member Posts: 3
    edited February 2011
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    Bookart, I consider myself to be on the butch side, but not super-butch.  After losing my hair (I've worn it long and shorter in the past), I have been "sirred" a few times.  Once this summer on vacation out west, I was in a ladies room and walking out a woman looked at me, then at the "women" sign above my head, back at me, and said, "this IS a LADIES room!"  I was really hurt and pissed at the same time. I told my partner and she was really pissed.  She made me show her who the lady was that said it and she kind of told her off, without being really mean about it, but told her I had just finished chemo and my hair was just starting to grow back.  Since chemo, I really like my hair really really short.  Now, I get sirred a lot now, and now...I really don't care!  I like myself, my partner loves me the way I am and screw everyone else!  But, I did get an implant on my right (I only had single MX), and I am having it out for physical reasons.  It hurts and it is migrating under my armpit!  I got it because I felt pressured into having the conlult because after the DX of BC I was in no position to make major decisions, (or so I thought).  I just wanted my breast off and the cancer gone!  I really wish I had gone with my initial reaction.  I never have been vain about my breasts, I have never felt like they define me as a woman or anything.  I guess I just listened too much to my family and friends, and I now regret having the plastics done at all.  It is so fake looking, numb, painful...how stupid of me!  But like they say, hind sight is 20/20!  It was nice to hear from you, Bookart!  And, JJ, glad you posted too!  It really is nice to have people to talk to who really know where I am coming from...totally!

    Take care...talk soon! 

  • JustJean
    JustJean Member Posts: 170
    edited February 2011
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    I'm glad to know I'm not the only one who took out the implants (actually, I never got to the implant stage, I had them take out the expander). I felt like a failure at the time, but then again I've felt like a failure in many aspects of this journey. I can't tolerate a bra, I'm not recovering like I should, I couldn't complete chemo, my diet... ugh... don't let me start on that. I got a pulmonary embolism back in late August and still can't breathe upon the least amount of exertion and that worries me.

    Sorry, didn't mean this turn into a whine session...

    Hope everyone is doing well on this Friday!

    JJ

  • july2632
    july2632 Member Posts: 3
    edited June 2011
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    Have a nice weekend. I should have been asleep hours ago. I got waylayed here.

  • bookart
    bookart Member Posts: 210
    edited February 2011
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    Waylayed is right, July.  I can end up staying up half the night just reading on these threads.  It's funny, because otherwise, bc hasn't ruled my life - just the past year.  Wow, after typing that, I flashed on my mother's death of bc, (and mgm and mggm) and the years of worry everytime I had an abnormal mammo and had to go back for another and an ultrasound or a needle biopsy.  So, yeah, it has kind of had a HUGE impact on my life.  Just a little de-nile there.

    I've gotten plenty of stares all my life and double-takes for instance when I'm washing my hands in the restroom and a woman comes in - I've even had them go out and check the door, then give me funny looks - and this is PRIOR to the bmx.  So it's weird to me to freak about it now.  It was just funny to me, before.  I don't have a problem among my friends and co-workers -- it's no big deal.  But it must be having some deeper impact because around strangers I'm bugged by their looks and obvious confusion.

    And I was never tempted to have reconstruction - too many problems reported by friends, plus my partner and I didn't figure that having numb blobs of flesh added to my chest would really help our sex life!

  • ljocef
    ljocef Member Posts: 3
    edited February 2011
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    JJ, Never feel bad for posting your feelings , good or bad!  After all, isn't that what this forum is about?  Laughing  I see my plastic surgeon next week and I am going to set up the surgery to take out my implant.  As I stated before, it was a HUGE mistake and I wish I never had it put in to begin with.  I didn't have anyone that I knew that had BC or implants, and I didn't know what to expect.  Thought it would be no big deal.  I will definately feel much better with it out!  It is always in the way (under my armpit) and it hurts all of the time.  I really don't care how it looks, and neither does my partner.  She is happy as long as I am healthy.  

    I have a new topic to ask you all about.  I am just a year out after chemo.  When everything was going on with surgeries and chemo and endless appointments and hospital visits ( I had really bad neutropenia during chemo despite Neulasta shots, and ended up in hospital with severe neutropenic fever), I felt as if there was a plan and I was following it.  Then came my last day of chemo. I said goodbye to my chemo nurse and she said "good luck" and that was that.  I've described the feeling as being dropped off by a cruise ship in the middle of the ocean and left to tread water...ALONE.  Of course, I had my next appointment in 3 months and then 6 months after that, but I got really depressed and anxious, and felt like no one would know if the cancer came back because they weren't seeing me on, what I thought, was a regular basis.  Right now, I am seen every 6 months by my surgeon and every 6 months by my oncologist, staggered, so I see someone every 3 months.  I get bloodwork done every 6 months and have mammo once yearly.  I don't feel as abandoned now as I did, but I still feel like I'm "out of the loop".  Can anyone else relate to this?  If so, what did you do about it?  I'm very interested to find out how others have dealt with this feeling.

    Thanks for listening (or reading, as it were)!!

    Hope you all have great weekends! Smile 

  • bookart
    bookart Member Posts: 210
    edited February 2011
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    ljocef: I'm familiar with the feeling.  I didn't have to go the chemo or rads route, for which I'm grateful; but it did mean that I felt the same adrift sensation.  I, too, see someone about every 3 or 4 months, but it still worries me.  I know there are some that need so much more care than I, but jeez, isn't there something I should be doing?  I hit this site pretty often, so I can keep up with anything new, and with others' experiences, in case there is something I need to know.  But that's about it.  I'm trying to wrap my mind around being ok with that, a little over a year from surgery.