I know I cant be the only lesbian out here?
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Country3223-
Welcome! We're glad you've joined us, although we are so sorry for the circumstances that have brought you here. The first days and weeks can be difficult to get through, we're glad you've come here for support. And this is a fairly active thread (last post was just yesterday), so you're in the right place. If you go to the left of your screen, and click on Active Topics, you'll see which topics are updated in real time. Lots of good info there, in regards to diagnosis, treatment, etc.
Again, welcome!
The Mods
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Country 3223...I'm happy to meet you as well, though I sure wish it was not here, although now that you are diagnosed this is a good place for information and support. There are other threads you may want to look at pertaining to chemo therapy from both a clinical and personal experience perspective. I did not have chemo so cannot reply in that regard. I am a UTAustin grad a few decades ago, but remember Austin and San Antonio with fondness. Hot, hot hot summer there should be about over as it is here in AZ. Yeah! I hope you have support from those you love and from your military coworkers/family as you go through chemo. (((hugs))) and ((((hugs)))). P.S. you might consider editing your post and removing your name as you will see when you explore this whole site that names are seldom used in posts, however, I've found that some people do you first names when they send private messages to a specific person. P.S.S. there is a ' Any Texas Hill Country BC Warriors' thread.
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Biopsy results - no new cancer. It looks like it will be watch and wait to make sure it doesn't do anything odd.
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Good news!
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Toad:
Celebrate your good news.
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Toad: That's great news!
Country: Welcome.
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Welcome to the new folks, although we all wish you didn't have to find us.
This forum isn't too active but I do keep this thread on my Favorite Topics list. I should check out the entire forum more often.
I'm doing pretty well, all things considered. Feel much older, can't do all the things I used to do, but I can do most (although maybe slower). May it stay this way for a long, long, long time to come!
JJ
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JustJean: 1 time is too many, but four times is way too many and you are right CANCER SUCKS. May you continue to be 'pretty well' for a long time and do the things you love, slowly.
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HI JustJean,
I'm south of the snowbelt in NE Ohio. I'm trying to catch up with your 4x diagnosis. (A month after finishing treatment for my first, I found symptoms suggesting a second - then a lesion. Fortunately, the biopsy was benign
But, with 5 breast cancer diagnoses in 4 generations (mom has 2), it's only a matter of time . . .)0 -
VERY, VERY LONG!
I thought this could use a soundtrack, so here you go:
Amazon ABC - Alix Dobkin
https://www.youtube.com/watch?v=lmr3ZYa0Aaw
xxx
HI JustJean,
It's lovely to see you here too, just the boost of courage I need to "come out".
We've met up at the MBC (mets only) forum at https://community.breastcancer.org/forum/8
After years of being directed to bco by google searches, I finally joined last November to meet Rosevalley and participate in the dying and death community at https://community.breastcancer.org/forum/8/topics/770023
I quickly joined the holistic health community as I've engaged holistic, natural and integrative healing for many decades.
Then, I wandered over to this community and became tongue-tied...Did I want to "come out" as a lesbian at bco? I was already involved in two often controversial communities, but much worse, I have been done with active treatment, scans, blood tests, interventions, etc. since going on hospice nearly a year ago. And, I didn't feel that I fit in here.
When members of this community write of being done with treatment, they clearly mean finishing treatment for earlier stage breast cancer, not giving up treatment to die.
The fear of recurrence is often palpable in this community. Meanwhile, I've been living with active disease for over 25 years.
And members write about going flat as if it's new territory, while I've gone without breasts, prostheses or camouflage since early 1991.
Since I don't have a partner or offspring, I can't even bond over those topics.
So, I haven't written.
Yet, a recent conversation with my hospice doctor has convinced me that there is a lesbian way of death that often differs from those in the more mainstream culture.
When he visited, I said, perfect timing, I'd just finished my book. He asked about it and I showed him Jeanne Cordova's book WHEN WE WERE OUTLAWS: A Memoir of Love & Revolution about her life of lesbian activism in LA during the mid-1970s LA. (1)
If you don't know her story, you can read more about her at her website or blog. (1,2) Her farewell letter as she's dying of cancer in 2015, tells me I'm not the only one doing cancer the lesbian way!
My friend, Mary Bryson, did research on queer women and cancer in the SF Bay Area and is producing a series of videos and research projects called Cancer's Margins Project: LGBT2Q Cancer Health and Care Experiences. (3) Through her, I learned that the queer cancer experience isn't typical of mainstream culture.
And I learned of Carol Trasatto's excellent guidebook, Conscious Caregiving: Plant Medicine, Nutrition, Mindful Practices to Give Ease, through the publication Lesbian Connection. For those who engage/enjoy holistic healing and dying, the book is a must-have. (4).
The hospice care doctor then asked me how he can train colleagues, caregivers and community members to better serve lesbian patients. I know enough of his lesbian staff to know he works well with his staff and after 5 ½ years as his patient, I know he is respectful with us. So, I opened up and talked about our issues and our strengths. I explained about community, especially those of us who came together decades ago through lesbian-feminism. I made sure to distinguish between the assimilationist and queer folks. And spoke of the special needs of LGBT folks who lived in the closet or are being forced into the closet as they need personal care of those who "love the sinner, but hate the sin" or come from different cultures and religions that don't accept or approve of us or our "lifestyles". He didn't understand why folks would choose to identify as queer, since it was a pejorative term in his youth.
The hospice doctor shared that most of his dying gay men patients are supported by a partner, but dying lesbians are usually supported and represented by a partner and a group of friends.
I've experienced the phenomena of friends caring for dying loved ones (LGBT and not) many times…sometimes it's a gathering of queer friends, sometimes a mash-up.
As I'm coming to the end of my very particular, very lesbian-identified life, a mixed-orientation caring circle has risen around me. I'm so very grateful and would like offer, there may be a lesbian way of death particular to us that reflects our lesbian-feminist roots.
Maybe.
Well, I'm exhausted again, just wanted to write in and come-out to this community, before I fade out to sleep, dream and to die soon.
Sending much loving kindness and fondness for all, Stephanie
PS, JustJean, thanks for opening the door between forum 8 and this group! I wouldn't have done this without you leading the way.
REFERENCES:
(1) WHEN WE WERE OUTLAWS: A Memoir of Love & Revolution
By Jeanne Córdova
(2) Jeanne Córdova: Notes from a Community Organizer
http://thislesbianworld.blogspot.com
(3) Cancer's Margins Project: LGBT2Q Cancer Health and Care Experiences
(4) Conscious Caregiving: Plant Medicine, Nutrition, Mindful Practices to Give Ease
By Carol Trasatto
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Welcome, Longtermsurvivor. I'm glad you joined us.
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Oh, Stephanie, I'm so glad you came out in this little space for us lesbians. We do indeed have different needs and ways and I'm so glad your team knows you so well.
This has always been a safe space to talk. We've had straight folk come in to post an encouraging word or two, but nothing negative has ever been hinted at. I've been a lesbian feminist for many many years. My son talks proudly about his lesbian mom to his friends and will not tolerate anyone making mean or snide remarks about lesbians or gays or anyone "different". In that respect I firmly believe I've done a good job..
You are completing your circle, my friend. I love you for your courage and thank you for saying that I had a hand in you posting here!
Hugs.. warm and gentle...
JJ
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Hi Toad,
Where are you at south of the snowbelt? I'm in a small town east of Cleveland.
Yes, five occurrences with cancer SUCK. But you know what? I'm considering starting my own business and buying a $40K automated quilting machine. Am I NUTS? Possibly so. But sometimes you have to follow your dreams - and why not go out doing something that you love to do as long as you can?
IM me if you'd like to talk!
JJ
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Hey you are nuts but hell yea go for it.
My Wife and I are currently trying to buy a run down laundromat that the community seriously needs. We are nuts but this is life, gotta keep living it.
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Hello everyone, and Longtermsurvivor it's nice to see you on this Forum. I'm familiar with Jeanne Cordova from an old (excellent) book, Lesbian Nuns. Will check out the books you mentioned. I'm unfortunately one of the many stressed about possible recurrence. Went from 'yes' to 'no' to 'maybe' in a short period of time that felt like forever so now am waiting to hear about surgical biopsy. Iwish you continued strength and grace as you near the end of your journey. Hugs.
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Longermsurv and all others on this thread your presence is so very much appreciated. It is obvious, but still a sad commentary that even 'coming out' in this anonymous space is fraught with fears of judgment and possible rejection. I now see more clearly why this thread is so thin. As a fairly new (about 1.5 yr) participant to bco I was sure there were more lesbians on this site than posted here. That you, longterm...chose to include your story here is a gift to this lesbian community. I thought of a quote by Audre Lorde, feminist, lesbian, activist, cancer survivor for 14years (1978-1992) when I read your posts, she wrote
"I want to live the rest of my life, however long or short, with as much sweetness as I can decently manage, loving all the people I love, and doing as much as I can of the work I still have to do. I am going to write fire until it comes out of my ears, my eyes, my nose holes--everywhere. Until it's every breath I breathe. I'm going to go out like a fucking meteor!"
― Audre LordeThank you all for being my meteors in the sky when I feel alone.
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That's just what I needed to hear, magiclight, the quote by Audre Lorde. That's a great fit as part of both the lesbian and the BC survivor communities. Thanks to you, and to everyone who shares on these forums. Hugs
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Jean,
I'm a bit north of Canal Fulton (south of Akron). I used to live in Newburg Heights - the no-man's land between east and west Cleveland.
When anyone tells me I'm nuts, I just look at them with a cocked head and say, "And your point is?" Go for it!
Longtermsurvivor - thank you for sharing. That is very much my experience of death in both Queer and Quaker communities (and especially so in those that overlap the two). Safe journeys to you, and thank you for stopping by on your travels.
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Hey Toad,
I have an ex in Canal Fulton, lol! And good friends in Canton. Perhaps we should meet some time! My partner lives in western PA so I certainly do a lot of traveling.
Stephanie, I wish you nothing but the gentlest transition possible. You have touched so many people on these boards (including me in a big way) and shall not be forgotten by us.
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Hello all.
I had a lumpectomy 9-yrs ago. A week ago, I was diagnosed with a local recurrence in that breast and a new primary tumor in the right. My consult with the surgeon is scheduled but I know I want a bilateral mastectomy, no reconstruction.
My bride (we were married 18 months ago) is so loving and supportive. And so far,so good with the attitude of medical providers when I introduce my wife.
Anyway, early days yet. Many decisions, many days ahead.
Peace
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Armecia: So sorry you have recurrence and a new primary tumor. Hugs to you and your bride as you both will be going through quite a bit together.
I've posted a new article about pro's con's of breast reconstruction or going flat. Yes, one of many decisions you will need to be making. May you find some peaceful times in the days ahead.
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Definitely no reconstruction for me. That can't construct a breast that has feeling so I cant see that it would ever really be part of me. Everyone is on their own journey.
The receptor info came back yesterday and I was shocked: triple negative. So I'm reading, trying to climb the learning curve. Meeting with the surgeon Monday. Not what I wanted to hear.
And Monday my sister called to tell me that she has a recurrence-20 yrs after her first BC.
It has been a roller coaster week
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Armecia: Yes, you are on one heck of a ride!! Hold on to each and every one of your supports during this time of great uncertainty. One step at a time.
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Since this is the only active thread on this forum, I'm going to post my celebration here! For my spouse and me, today is our 13th wedding anniversary, coming up on 31 years together in March. It was scary business having BC 20 years ago when I was 33, and it's scary business again 20 years later. So grateful to have her with me on this journey. Lots has changed in 20 years, and I'm not too freaking impressed to be here again (!!!), but I am ever grateful to still be sharing my life with her.
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Goldie! How marvelous that you have been together with her for so long!
The cancer part sucks, tho. But to go 20 years - wow!
Welcome!
JJ
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thanks jj
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Congratulations, goldie.
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Goldie: Sorry to hear bad news/good news linking both the BC; however, the good news pars surely extends way beyond BC. Glad for this thread as a place where you can share both. Do share more when you celebrate the March anniversary - and of course anything else before that.
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thanks ladies. Going to go for a right side ultrasound next Wednesday to check something low risk that's on a 6 month follow up from my MRI. I'm on their 'rapid assessment' day so radiologist will meet with me right after u/s and do biopsy if necessary. I didn't know they had rapid assessment days here but I was so relieved to find out I wouldn't have to wait on u/s results. Surgeon was considering SNB on right side during bmx just in case so if cancer showed up I wouldn't then have to have an axillary lymph node dissection. Now we'll know before surgery if right side is cancer (and please not). I'm a little freaked because that's what happened to my sister. She opted for bmx after genetics testing and surprise surprise in addition to known ILC on one side had IDC other side. I tell myself it's a low risk something or other, and bilateral bc is very rare, but I'm kind of worried anyway. I really hope I don't need chemo or rads again and at this point with dcis I won't. I googled generalized anxiety the other day but realized quite quickly I don't have generalized anxiety disorder, I have a reason to feel anxious! Lol anyway our new pup is quite a good distraction and quite another ball of stress all on his own. I'll be glad to be on the other side of March 3rd surgery
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Goldie: It sure seems that life hands us such a mix of positives and negatives. The puppy part does provide distraction but as you say is a stressor all on its own. My little guy is now 8 months old and is getting to be more of a companion as we are able to communicate much better. As a youngster of 9 weeks when I first got him he had no clue about rules, boundaries and limitations and words just flew by his head. Now he knows when I plan to take him in the car, when we are getting ready to go for a walk and he jingles his leash hanging in the laundry room, and when it is meal time plus so much more. Hang in there and in the next 2 months by the time your March surgery is here s/he will hopefully more in turn to your needs. I don't know what you financial situation is, but if you can send him for a couple of weeks to a trainer that would be great way to decrease some of your stress. BTW - what a cutie in that photo. My general doggie philosophy is that a tired dog is a good dog and s/he looks like in need of a rest. I know I did not talk about the other BC stressor - the big one- but until you get the ultrasound results on Wed distraction is good. Hugs to you in this most difficult time of waiting.
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