I know I cant be the only lesbian out here?
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I don't remember if I've posted here before or not. But i am a 63 yr old lesbian in the Santa Cruz Mountains, CA.When I moved from across the hill I lost track of most of my lesbian friends. Now I'm WAY up in the mountains & nobody wants to come & see me.
It seems like there were more than one lesbian BC group in this county a decade or so ago. Now I can't find anything, but just the regular (all inclusive) BC support groups for women. I'm veyr happy to at least see this thread. Yippee! Believe me, I'm not glad to know that you are here, but glad to find you since you are.
Right now I'm trying to get a lymphedema sleeve that fits me right. I've been thru several from a fitter & none of them quite work right...
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Hi, Mountain Gem--
This list is not very active, but it's good to meet you. You live in a lovely place! I'm in the flatlands of the Midwest, myself.
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Hello, I'm Donese. I live in Texas. My partner died 7 months ago due to breast cancer. I haven't found this thread very active but there is a FaceBook thread that is very active. It's called Lesbian Cancer Survivors and Caregivers check it out and you see a difference
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Hi Virginia & Donese. Thanks for the welcome. I'll check out the FB thread too. It's nice hearing from you both.
Mt_Gem
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Check out the Facebook site for lesbians with breast cancer.
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Nice to hear of the FB page. Almost three years out from dx, I'm only dropping in to BCO occasionally. I spend more time on FB, that's for sure.
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Mountain Gem, are you checking out the Lymphedema pages? There are some very informative and supportive people on there. They helped me a lot.
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Thanks Virginia. Nice to meet you too. The only people I know in the Midwest are my sis and BIL. They live in Toledo. I visited them 2 yrs ago & really enjoyed the visit & all the nice people I met. It was sort of funny because I kept getting very subtle signals from lesbians. When I would mention it later to my sis & brother they hadn't noticed a thing. Here everyone is so out of the closet that it was like walking back in time.
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Donese,
I'm so sorry for your loss. I hope things get better for you.
Bev
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I am completely furmischt over how difficult it has been to find any lesbian BC support groups - online or in-person. I live in a very liberal town. I was the first out lesbian elected to our County Board...way back in 1982...and my state just sent the first out lesbian to the US Senate. But the local Gilda's Club said they offered a lesbi group but nobody came so they stopped. Well enough with the carping, thank you all for being here.
I had a paaartial mast-ectomy on talk like a pirate day (9/19/12) and just completed 31 radiation sessions - burns were bad for 2 weeks but I only stayed home from work for 3 days in the last week. I demurred chemo. After I meet with my med onc, I will begin Arrimidex - well actually generic anastrole. I will meet with my medical onc in early December - though I know her well as she treated my estranged wife two years ago, for a Stage IIIb adenocarcinoma, with a huge tumor that had grown into her chest wall. I will tell more about that experience...and why we remain estranged even as I go through the proximate experience without an intimate's support, on a later post.
My initial posting questions are:
1) Does anyone know if generic anastrole is more likely to have side effects, especially bone pain, than trademarked Arrimidex?
2) When you underwent your surgery(s) did any MD or PA discuss the suspension of any Do Not Resuscitate (DNR)order you may or may not have had in effect during prep, surgery and recovery - at least until you were released to a general floor or from the ambulatory procedure clinic?
3) Did anyone discuss your desired "Code Status"?
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Hi, Doufeu--
I don't think anyone really knows if you might have more side effects from a generic vs the brand name. There are women on these boards who had more side effects from one manufacturer's generic to another's.
My surgery was less complex than yours. Surgeon did not discuss those issues, but hosptial personnel did record my choice of Power of Attorney and scanned a copy of the document for their records.
Congratulations to Wisconsin on their new Senator!
I'm glad you found this board. You may want to check in on the current Arimidex board as well....
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Hi Sorry these boards have not active lately. I can tell you there is life when you get to the other side of this...PM me if you have questions or need to talk
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Hi mt gem and everyone,
I struggled mightily with finding a LE sleeve that works for me...I now have one for light activities, one for sports and a tattoo sleeve when I am feeling like a punk:) Have you tried Mediven yet? What are you struggling with about the fit (length, binding at elbows)?
anne
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Anne, thanks for the welcome. I'm struggling with wearing any brand because they rub at the top of my arm no matter how tight or loose. I have tried Mediven & had the same problem. My skin is just extremely sensitive & I swell badly. The sleeves I finally ended up with are Jobst Ready-to-Wear without the silicone beeds in 20-30 compression because that's all I can stand. If this doesn't come together I'm going to have to have a larger garment that has a foam core. Ugg!
My pump & night garment should be here early next week. I also have truncal LE so I have to get fitted for bras or vests too.
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sorry mt gem
It is a royal pain. I had a tough time finding people to fit me, and it was one of the more frustrating aspects of my treatment. I only have mild LE, so I can imagine it must be even more frustrating for you. Hope you get it resolved soon.0 -
Check out lesbians and caretakers with Breast cancer on Facebook
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Doufeu, I know I was asked about DNR stuff, and because I remeber saying Heck yes, resuscitate me. I work in medicine, know of course I could be in a totally different boat at any time and would answer Heck no, let me go. I don't remember who it was who talked about it with me. Don't think it was my surgeon.
I take generic anastrozole. No problems with it except a global accelerated aging.
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Merry xmas Sisters. Its been a while since Iv'e posted here and for that I am sorry. This thread is a little more active than when I first joined BC.org but not much, seems odd since lesbians are more likely to be diagnosed with bc than the general population. Iv'e been out of active treatment for 10 months now, went through everything that they throw at early stages bilateral mastectomy, Chemo, Rads, hysterectomy, and now gen. arimidex. Lived by myself almost the entire time (my mother stayed a couple of weeks on 3 different occasions during the year and a half and had my dogs with me). It was difficult as hell but I made it through it. I will try to post here at least once a week from here on out. Cooka and Outfield gave me inspiration while I was going through what I now refer to as The Mess. Outfield for her time out of treatment and LE insight, and Cooka for steering me to reading material that helped me make sense of being a dyke with breastcancer. I hope the new year brings hope, less pain and love to all of you. I will be checking in and feel free to PM me even if its on a different subject (I'm currently getting ready to do winter maintenance on my motorcycle so if you want to talk bikes). I know how incredibly isolating this disease and treatment can be and don't want anyone to go through it alone even if the only thing I can do is give support from Kansas City. Being forced to be strong isn't easy and even the strong need support. Krista
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mutt1963, welcome back! We always appreciate hearing from members who return to share their support and experiences after active treatment is over.
For those who are dealing with lymphedema, there's a very knowledgeable and endlessly helpful group in the Lymphedema forum here on the discussion boards.
Best wishes for the holidays!
• Your Mods
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Wishing everyone a happier new year. Krista
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Hey, good to hear from you, and you made my day!
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Is it possible to revive this thread and make it something that we check on a regular basis?
I would really like that.
I am 2+ years out now from the bilateral mastectomy. On Anastrazole with all kinds of side effects. My arthritis has gotten worse and my knees are so bad now that I find it difficult to get up from my couch.
And I hurt all the time. It's always a relief to go to bed at night because at least for a few hours I won't be in pain.
On the positive, I'm very very very much alive and planning on staying this way for a long time to come!
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I'm trying to revive it just by posting on it alot. JustJean, don't know if we've met but nice to hear from you. I hope your side effects from the blockers ease up as time goes by. Mine seem to be showing themselves more the colder it gets, but hey the hot flashes aren't so bad. Outfield I hope you had a good New Years eve and day. Jean you should have recieved the snow and now the cold we got here last night, hope it isn't too deep and hasn't stirred your joint pain up more. I'm with you on being around for a long long time, and no matter what, I am feeling alot better now than I did this time last year. Good by 2012! Took my Sportster out Sunday evening for the last ride of the year. Think the cops were all given the day off in anticipation on New Years because I managed to spend quite some time riding 30 miles over the posted speed limit, just because I can now. So now you guys all think I'm crazy. What are the things you guys do to get your spirits up or to try to have the same feeling about anything that you had before you were diagnosed. Or what do you do that takes your mind completely off of it?
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Happy New Year all you beautiful lesbians! I've been off the Arimidex since Dec 13th. I sure have less pain, especially in my fingers and toes and the flashes and sweats are mostly gone. But I've been dealing with some wicked depression.
I've been really trying to get up the energy to look for a new place to live and think about actually moving. I lost my handy-person and it's just too much work for me up here and it's WAY too cold. I know I'm a wimp because I'm in California... But I'd love to get back closer to town again. I put off going out much because I feel just too lazy to take a shower and drive to town. I hope I would be able to socialize more with some of my old lesbian friends if I moved. Where I am now, no one wants to drive up here to see me. I've let myself become pretty much a hermit.
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Mountain Gem, have you talked with your doctor about the depression? If its interfering with your life then something needs to be done about it. If its due to your living location can you do anything about that? Sorry you are dealing with it. Hope you have fewer or less bothersome SE's with the new estrogen blocker.
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Mutt, I have no idea if we've met or not - the chemo brain has pretty much taken all of my short term memory somewhere else other than my brain. It's only because I put "check lesbian thread in bco" in my phone that I remembered to come back in here.
However, I'm pleased to meet you!
I've been feeling very tired of cancer recently. Not my usual level. More like a "is the rest of my life going to be this way" kind of tired. I am beginning to understand why people give up. Not that I'm anywhere near ready to do so, but I'm catching a glimpse of it. I'm very tired of pain 24/7, of being on arimidex, of everyone in my "real" life not understanding what I'm going through. Ah, the list goes on.
But so does life. It's a different life, and not one that I would ever have chosen, but it's a life and I make the best of it that I can. Some days I am better at that than others.
A friend gave me a "genie bra" for Christmas in the hopes that I can tolerate wearing it. It's been hard to just go flat but I cannot stand how every bra I've tried hurts so bad after just a short time on. I'm afraid to try on the genie bra and to find yet one more thing that doesn't work. Anyone have any experience with them? They even have a pocket in them!
Hello to everyone else that I don't know (unless I do know you and just forgot, lol, in which case I'll say "Hey, how ya doin?") and I've set a reminder in my phone to come back in here in a day or two and check things out again.
JJ
*edited because I forgot an entire part of a sentence. Ah, chemo brain... another gift that keeps on giving.
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JJ, I'm sorry you are still feeling the love from chemo brain. Mine feels like I use to have a bunch of empty lockers to store stuff in and someone cleared out the lockers while I was in treatment. Mine is getting a bit better but names are still missing (to tell you the truth I wasn't real good about remembering names before this cr_p). I haven't been out of treatment as long as you so I don't know the lows that you are dealing with, I do have them but right now I look back at this time last year (looked like Shrek and felt twice as bad as I looked) and I'm happy I'm not there. Have you talked to your primary care doc about maybe taking an over the counter med for the pain? I don't have much info on bras, I'm flying the flat. Fashion isn't my strong point. I do know that the sports bras that I wore before mastectomy cut into my armpits afterwards (was wearing them to try to control swelling in the area). Keep on trying things (I bet that can get expensive) because they are coming up with solutions for the stuff we have to go through all the time. I do remember some women on another thread talking about finding solutions with bras or camisoles(sp) from Wallyworld or Targ_t. I can't recall which thread it was but think they also had solutions for sewing pockets in the garments that were comfortable. While your searching for the perfect bra you are helping to keep this thread active so other lesbians who have been searching the web for info or signs of life can find us and not feel like they are the only one in the world. Have a good friday whether that means you get to stay in bed longer tomorrow or your going out with friends friday night. Mutt
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Hey Mutt,
I've been doing the flat thing for almost 3 years now. When I had my mastectomy I had them put in expanders, which was the worst decision I think I've ever made in my life. Had them out 3 weeks later but they caused a lot of damage in there and two years of specialist physical therapy took care of adhesions but not the pain. Physical therapy does nothing. Exercise does nothing. Over the counter pain relief does nothing. Tramadol does nothing. Percocet and it's ilk do nothing but make me stupid but nothing for the pain. I seem to have tried everything and the only thing that relieves the pain is sleep.
I'm about to the point where I'm going to ask my primary to send me to the chronic pain clinic. I don't know if they'd have any other ideas, but it might be worth a shot.
JJ
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Sorry your attempt at reconstruction failed. By all means get a referral to a Pain Management Doc. Ive already been to one and things are kind of under control for now. Sleep is still crazy and have alot of stress lately but not anywhere near what they were. If you want I'll PM what I know about it. Is there anything in your life that you do or would like to do that takes your head away from your current physical situation? If you can find something that lets your forget for a couple of minutes it helps. From going to your profile I saw that this is your second round with this cr_p, sorry about that too, its got to be hard to face this sh_t again. I give you credit for hanging in there through round 2 that didn't go too smoothly. Looks like you liked dancing with the stars? Are there other tv shows that might help you through this? Seems like that one was on everyday for months. Hope you have a better day with less pain.
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