Lesbians Supporting A Partner Who Has BC

ramonajane

Wow! Its been awhile since I've checked in. Glad to hear all the updates from folks, and to hear from some more of us!



Lelsy - welcome to the group. I'm sorry you have to be here, but glad you have found us. Knowing there are more rainbow sisters out there going through this has been inspiring for us, even though I haven't posted lately.



We went to an absolutely amazing breast cancer conference in our city a few weekends ago. We learned a lot, and got some good information. It was good timing for us, as a month or two earlier, we wouldn't have been ready to hear all that we did.



Our next big step is tonight - we're going to one of those "mastectomy boutiques". To look at prostheses, and the bras that go with them. We really know very little about the options, so decided one of those full-service shoppes is the best idea to start with.



S decided against reconstruction for now, and sounds as if she is not considering it for the future either. (Of course, she reserves the right to change her mind at any point, and I support her in that right.)



I'm pretty nervous about it, only because the pictures of the boutique online look pretty frilly, and she's definitely not a frilly gal! However, we are taking courage from the fact that we met one of the proprieters of the shop at the resource faire that was part of the conference. She was really nice, and didn't seem weirded out by us at all, and it was pretty clear that I wasn't just the best friend or the sister along for the ride.



So, its one of those things I never thought I'd do - go with my partner to buy a breast. But we never thought we'd be doing ANY of this, did we?!



Glad to hear updates from all of you. I'm at work, so no time to reply individually unfortunately. But happy to read the check-ins, and am thinking of you all in the ups and downs of this journey.



Big warm (and gentle) hugs, and mugs of tea for all,



love rj

ramonajane

Oh - also forgot to add that Arimidex is really doing a number on S's joints. Especially her hips. Its very hard for her to get out of bed in the morning and get to the shower. After the shower, and an hour or two of normal moving about, she's a bit better.



Have an appointment with the onc at the end of November, so we'll see how it is then.



Remembering the Arimidex everyday hasn't been a problem - one of us always remembers. It feels like a proactive thing we can actually DO in order to keep away a recurrence. Last night, we talked about "what if it comes back" and "what if I die from this". That was hard, but we always talk about everything, and this is no exception. We are a team, and we will make the journey together, no matter what happens.



AND - also forgot to add that I had my OWN mammogram a month ago and it came back all clear. That was certainly a relief.

lv2cmp

Hello everyone, been a while since I have checked in and glad to see the board is alive and well.
Ramonajane I couldnt help but laugh out loud when I read your statement about going to buy breast and how S is not a frilly girl. I know it isnt funny but I guess we have to all find humor wherever we can. I am also not a frilly girl and I am sure we gave the lady at the boutique something to laugh about after we left. She took it all in stride and definetly understood that S wasnt my sister or some dear friend that came along. It was funny to pull out all of these different bras and my comments be,,too much lace or too frilly and I need one that doesnt have seams because I wear alot of t shirts and stuff like that. I am sure not the normal "lady" talk in a boutique but then again who defines normal. I was able to find some that I really liked and I do wear my prosthesis on occasion but not all the time. I find it is nice to go without and it doesnt bother me in the least. At first when I got them I wore them more but with time and the hot weather in the south I decided no bra was good. I was scheduled for reconstruction this week in New Orleans but with all that went on that didnt happen. I have yet to reschedule. Parts of me wants it done but then the other part of me really dreads another surgery. Right now I am just enjoying finally feeling like myself again and hate to go through the recovery period of another surgery. I know I would recover quickly because I seem to always do but you it just takes so much time to feel like your old self again.

I totally understand the joint pain. I am on exemestane which is like arimidex and I have the same thing going on but not as bad as you described. Yesterday my knee hurt all day but today it seems fine. Mine mostly seems to affect my back and my hips. Through all of this I have found out that I have arthritis in my hip (yes at 37) so some of the pain may come from that and how the meds effect it,,who knows??!!??

Great to hear from everyone and hope everybody has a nice weekend.

lesleyA

hello all,
\nice to keep reading all your brilliant posts...keep up your positive thoughts !
well we went to docs again yesyerday.. and we are getting closer to the good news!! doc said she was "almost certain" the lump was because the implant has moved, after it appears to have formed a capsule round it which is pulling the implant awayf rom the original position, and the lump is the last of the breast tissue being squashed. She will send us an appointment for a scan to be sure. But she seemed really calm about it and not concerned. we both are feeling much more poitive and relaxed, we had pink champagne when we got home!!
the doc was very pleased to see sach as she had a very poor prognosis at firs ans she was really nice!! so i didnt need to get pushy or bossy! the only downside is waiting a week or so for the scan appiontment, and then waiting again to see her but she was so unconcerned it reassured us both... and seen as this is the doc that missed the original lump for nine months we are thinking she would not take chances if there was room for doubt...
so ladies your positive thoughts are working for us up to now!!. please keep them up and we willl do the same for all of you!!
oh she also asked her if she wanted her nipple tattooed on the other one, the oginal bad boob!
sach said she wasnt sure so im buying a felt tip to draw one on tonight to see how it looks!!!!
with a bit of luck she will see it as foreplay!! ha ha.
speak to you all soon . My very best wishes to you all.
iv2c hope your joints are a bit better!! and hope you have made a decision re reconstuction.... give yourself a break like you say you will know when the time is right i guess.
take care.
lesley.xxx

lesleyA

ps, we are celebrating by registering our civil partnership, Englands brand new legal equivilent to marriage for those on our bus!!!
we have bought our rings and they are inscibed , mine says my sweetheart and hers says my darling.We aretrying to book westminster registry office in london for christmas eve, if we cant get xmas eve the week between xmas and new year!!!!
how sloppy eh!!
thanks again for all your positive thoughts. sending loads back to you all.
lesley.xx

ramonajane

Oh lesley! That's wonderfully exciting! I hope you have a great celebration of your partnership. Sending heaps of love to you and yours from across the ocean.



We've had a rough couple of days. S is really struggling with body image issues. Feeling like her body isn't her own anymore. She came home in tears last night. It was so hard to see.



Can't articulate it now, but it sure is one of the most painful things to see the woman you love hurting so much, and not be able to fix it. I cried right along with her.



How are the rest of you?

lesleyA

oh ramnajane bless you and your love. I know what you mean about the sense of powerlessness. I find that hardest of all.I know im not in your shoes right now but i really can empathise.
Im sure s appreciates and takes comfort from knowing you love her so deeply , no matter how she feels she looks.
thats what real love is and what real love does....just keep doing it!
my love to you both and thank you for your good wishes.
lesley.xx

ramonajane

OK - Well I've made some progress today. Got in touch with the American Cancer Society Navigator programme, and the Navigator faxed me a list of places that have mastectomy supplies - bras, prostheses.

We never did get to go last week, as S had a work thing that interfered at the last minute. It just gives us a bit more time to research.

So, I have the list and I talked to a lovely gal at the insurance company who explained the benefit. One prosthesis/two bras per 12 months. 10% member cost, unless you've met your out-of-pocket expense, which of course she HAS!

S has agreed that it is a good idea to get in before the end of the year at get a prosthesis and bra, since the insurance will totally pay for them at this point.

I feel good about this research and info, as I had told her I would take that part on and she agreed. Now, we just need to review the list of shops and see which one looks good. (I didn't know there were so many!) The one we were going to go to last week was just one we heard about at a conference.

In many ways, the last month has been way harder than the ones before that - surgery and post-sx. Maybe because all the intense medical stuff is done for now, and we are left on our own to figure out what the new picture looks like.

Its all very confusing. Thanks for listening.

lesleyA

Hi Rj, sorry to hear you are having such a confusing time. I hope the fog lifts for you both soon. Does sandy come in here to read what others think and how they have dealt with what she and you are facing now?
its very strange feeling isnt it when the "cancer" is past, meant to be gone... and then you have to find your way of living your life in the here and now, but in some ways in the shadow of the cancer...before we had this last scare sacha and i were doing just that. I knew i was in love with a woman who had "had" cancer and that it may or may not come back. For me(and her too in her own way)it was like living with a bomb in the room that may or may not go off, and that even if we moved house we had to take the bomb with us!!
sacha uses her majic "off" switch and only deals with "cancer" when she has too and amazingly , she doesnt focus on it or think of it between times,thats why i know she would never come in here. Its just her way...I envy it sometimes.....I know after we have this final scan we will be back to the stage you are almost at now RJ... living with the bomb, but trying to remember our girlfriends "had" not "have " cancer.
It can be very scary and difficult... and yet as im writing this im very very concious of those of you in here, supporting and surviving, who would love to be in our position... my thoughts and love go to you all and be assured i dont take this position for granted or forget for a minute how lucky we are.

take care RJ and all of you.
love as ever
lesley

lv2cmp

RJ just wanted to toss out to you to check out the ABC bra that is made for t shirts. It is less girly and if I remember correctly without scanning back that was one of your concerns. I have 2 of them and they are great or at least as great as any bra can be. I personally dont mind going without most of the time but maybe that has just come with time because I know when I was waiting to get my prothesis that is all I thought about and how nice it would be to have boobs again but now I dont really care. Take it or leave it, I am who I am boobless or not. Heres the link for ABC and its a comfy bra just to keep in mind. http://www.mastectomy.com/cart.php?target=category&category_id=26 It is model 106.

debbieroo

My partner has breast cancer,we have been together 16 years. She has ALWAYS been the STRONG one, and now I must step into that role.

lesleyA

scan on 17th . docs appt to discuss results week after!!! too long to wait!! will come back to update you all.
lesleyx

lesleyA

sorry to hear your news debbieroo. you will be constantly suprised how strong you can BOTH Be now. you will be each others strengh... and you wuill get a bit from in here!

but i have to tell uyou all!
had scan.NOTHING there!! two moved about implants and fatty tissue bump and NO CANCEr
roll on 7 years clear from a pants diagnosis!!!
see. you just never know do you... the odds and facts and figures dont always win!!!!
love and best wishes and masive thanks to you all.
lesley.xxxxxxxxx

cowgirl

bumping up higher so more can see!

ramonajane

debbieroo - we are here for you. Share more if you like, or just know that we're rooting for you. I'm a caregiver too, and it can be challenging when the roles you are accustomed to are shaken up.

lesley - glad to hear the news on your scan! Happy day, happy day!

cowgirl - thanks for the bump!

We're continuing to do well, and manage the small side effects from the Arimidex. Peeling under-eye skin - that's a new one! Expensive, non-toxic eye cream from a department store seems to help. I was so proud of my partner - she asked the sales person if the cream contains plant estrogens. (It does not.)

Oncology appointment next week, after the holiday. I'm not sure what to expect - its the first "follow up" appointment of many, after we were "set free" so to speak from the rigors of frequent appointments. I'm hoping for reassurance, and information.

This is our "holiday at home" week - so nice to have the whole week off and nowhere to be. We're taking advantage of all the things to do in our own city that we never make time to do. Hooray!

Love to all of you - I think of you often even though I don't post much anymore.

Feel free to update when you are able, and any lurkers, please feel welcomed to post.

Together we are strong, and we can reach back and help the next ones that come along.

namaste,
rj

ramonajane

lv2camp - thanks for the info about the bra. We will definitely check into it.

Going to the "special store" is on our list of things to do this week, as we haven't gotten there yet.

csp

Hi everyone,
I wanted to wish you all a safe, peaceful,restful day with your loved ones.
Happy Thanksgiving~
Carrie

ramonajane

Hey gals - how is everyone? This thread is awfully quiet. Hope everyone is just busy...

S had her 3 month oncology visit last week. Her labs were clear, her physical exam was clear, and the onc said she is doing well. The side effects of the Arimidex are not unexpected ones, so that was reassuring. Does anyone else break out into a cold sweat when they get off the elevator at the oncology floor? I do. I told S they should have oxygen cannula hooked up in the waiting room, so you can take a seat and "plug in"! LOL

I just got a tip today about a bra called The Grace Bra, by a company called Moving Comfort. Its a sports bra with pockets for prosthesis. AND - it does NOT have a bow on it! Great for my butch wife, who does not wear bows.

I'm off on a plane in a few hours - going back to a city I used to live in. While there, I will hook up with several women who have been helpful to S and I in this BC journey. Two of the women have been through breast cancer themselves, one a 9 year survivor, and one dx just 8 months before S. It will be good to connect in real life with some folks, although I'm incredibly grateful that there is so much Internet support available, too.

Hope everyone is well - give a shout out to let us know, okay?

love to you all -

ramonajane

cowgirl

ramonajane I had wondered where everyone was too! Have a nice trip!

ramonajane

Is anyone out there? Anyone else feeling the stress of breast cancer combined with the holidays? We're having a really hard time coping with the combo of holiday stress, breast cancer stress (worry of recurrence) and grieving the one-year anniversary of Partner's father's death.

Its coming out in our interactions with each other, and some nights, our communications skills are lacking. Just frustration all round.

How is everyone else? Anyone want to fast forward to March with me?

cowgirl

Ramona,
I am so sorry you are struggling and no one seems to be posting. Vent away I will listen, this is not a easy time when you are dealing with what you are dealing with. I bet the rest are busy with Christmas travel.

Support is support and honestly we are all family here on BC.org! What happens in March?

mpetago

Here I am - I didn't forget you! We moved the end of October and it's been non-stop shenanigans with computers, internet access and then couldn't remember my log-in once everything was finally working right. After I saw your post, I knew it was time to get it figured out though.

I know that for us, last Christmas was pretty depressing in some ways. I had just finished radiation and was still burned and raw - not to mention uncomfortably fat from the steroids - we were damn near broke and the family we had in Colo. had essentially abandoned us through my whole treatment. Didn't feel like going to any of their houses and putting on the happy face - so we didn't. Pretty much just sat home looking pitiful.

This year, we decided that the holidays were going to be great and I think they will be because our whole attitude has changed as a result of the hell we went through. On the one hand, our inclination to take any s*** from anyone is pretty much non-existent, yet we're also extending ourselves way beyond our normal social circle - which basically consists of . . . us! So we've invited people from Shuniece's job, and a family from my now "old" job (more on that later) from New Orleans - and basically we're determined to enjoy ourselves. I'd say our stress level is nothing compared to last year - maybe it's the time factor, better living situation - but really, I think it's that we finally figured out that we have to set boundaries in order to preserve our peace of mind and the life we want. So now instead of the usual family problems and guilt trips that used to divide us, we're standing as a united team who understand what we want and how we want to be treated. That breakthrough, more than anything, is where my better mind frame is coming from this year, I think. Also, I really do feel grateful to be here for Christmas and want to make the most of it - we all know what we're thinking right at diagnosis - but now I plan to be here for plenty more.

That being said, I AM still more tired than usual and all the running around takes a toll. I can honestly say that it was a good 8-9 months out of treatment before I felt close to normal. So take it easy as much as possible because it takes some time and plenty of relaxing to bounce back from treatment. You also have the recent death of a loved one confronting you - so it's certainly understandable that you're both feeling pretty frazzled and usually it's the ones closest to us who bear the brunt of our stress.

I don't know if any of this is remotely helpful, but please know that we are here for you - and I will be checking in much more often in case you need to vent, rant, cry, celebrate, or anything else! And, if you like, I can share stories about the boss from hell, the mother from hell or the truly amusing things our son says and does if you just need a distraction!

Big Hugs to both of you,

Melanie

lindamik

Wow, I cannot believe it has been so long since I have posted. Welcome to all that have joined in and thanks to those that have given support. Kerri has made it through her 4 A/C treatments. The last one had to be rescheduled a few times as they could not get a vein. They tried for hours each time and finally gave up and after the 3rd appointment they ended up using the right arm where she had the mastectomy. The onc said it was more important that she had the final treatment and it outweighed the risk of lympodema. If we had to do this over again I think I would have pushed for a port. She had one years ago when she had the anuerysm but they had to remove it to put in a shunt. All in all Kerri is doing wonderful. Hair is starting to grow back and she is all excited about that. Because of her dementia she sometimes "rediscovers" her missing breast and has a ton of questions, those are the most difficult times. However the dementia can be a blessing in disquise as she just accepts everything with a smile and has no worries. I on the other hand am coming up to the 90 day check up time and I am really getting scared. What if??? I miss being able to talk to Kerri about things, she was always the strong one, so now I have to hide my concerns so it doesn't upset her. I have not taken her yet for her bras, I have the script and will look up the stores in the area.
I have missed everyone here dearly and just had to post before the Holidays to wish everyone a happy, healthier New Year. Livestrong, Lv2, Mel, RJ good to see you all. In just a few short weeks we can all look back and say it was last year, won't that feel great, and another reason to celebrate.
Thanks to all the new posts, you have come to the right place and we need you as well as you need this forum.
Happy Holidays to all. Linda and Kerri

SpanArtist

Hi Ramonajane,

I'm with you!! My partner and I are spending 5 days at her sister's house and I've been sleeping the whole time as an escape (her family is lovely too). It's just all too much this year...I can't wait for it all to be overwith. I'm such a Scrooge this year!

Hugs,
Liza

ramonajane

So good to hear from everyone. I was feeling pretty sorry for myself when I posted that. It was a hard time. Thanks for responding. Just reading those notes really perked me up.

We made it through Christmas - what a big milestone. S's surgery was on 7/25, so Christmas Day marked 5 months.

Nothing in particular happens in March - its just that the end of winter would be in sight, and that's the month we take our "I'm sick of snow" warm/desert holiday. Winter can be sooooooo long here.

We're doing better the last few days. Laughing more, exercising, doing fun things together. We have a four day weekend coming up, and that will be nice because it will be "just us". The holiday weekend was nice with S's family, but they take lots of energy sometimes. Plus, grieving her dad's absence was very sad. (He died 12/5/04 - last Christmas was a blur.)

Arimidex continues to go well for S. She had a Dexascan a few weeks ago, we're waiting for results of that.

I think I'm just going to be on the edge of my figurative seat for the next two years, as ILC usually comes back within that time span from what I've read.

That's just me rambling - thanks for listening. This board is such a lifesaver. I felt so loved and warm when I read the responses. People IRL expect you to be "over it" - she had her surgery, she didn't need chemo, she's taking a drug, voila - you're "done" with cancer. Oh, how I wish it was that easy. Sometimes, I just get gripped with fear for a minute - "OMG - she has CANCER!" And when does that verb change to past tense? When did she HAVE cancer, instead of HAS? I don't know.

The past few weeks, I've been crying a lot. I think I held it together all summer and fall - at diagnosis, during decision-making, surgery, post-surgery, recovery. I was strong and stalwart. It seems it feels "safe" now, as we go further along. I didn't expect it, but after I figured that out (with the help of some friends) I'm realizing that I just have to go with it.

Thanks, everyone, for being here. Breast cancer sucks, but breastcancer.org makes it do-able.

CJAY

hello ladies--i have been lurking about these parts on and off for awhile. i was diagnosed with bc 9/04, and went through lumpectomy, chemo, and radiation, and managing mild lymphodema. you see i hadnt posted anything up until now because i didnt consider myself a lesbian and i certainly didnt have a partner. well, after staring death in the face, it makes you take stock in who you really are...well....i am in the process of figuring that out now. i am admitting that i am attracted to women and am "seeing" a wonderful woman right now. just thought it would be a cool story to share here.

ramonajane

Hi CJAY. Thanks for sharing your story! I hope your self-discovery brings you to a wonderful place.

I'm still here women - hope you are all well. Had myself kind of nervous a couple of weeks ago - S was coughing and coughing. I'm thinking does she need a chest x-ray? Does she have mets? Shit. We've only had one NED visit. Can it turn bad this fast?

Um, no. We DO need to change the filters on our humidifiers though! Gross! They were filthy - I'm sure they were spewing all kinds of things in the air! And sure enough, after we changed them - no more coughing.

This week she told me its still so hard to be topless in front of people (not me) in the health club locker room. I told her to take as much time as she wants - she can be as private as she likes for as long as she likes.

I still cry a lot, but not as much as right before and during the holidays. I think I finally felt it was safe to cry, as the acute caregiving stage was over for now. So, cry I did. Now, its just occasionally.

Check in if you are lurking - let us know you are out there and how you are!

love, ramonajane

ramonajane

Anielogue - I hope you have found this thread - welcome!!

PeggyStevens

Thankyou for this thread. I found it invaluable tonight.

ramonajane

Hi PeggyStevens - welcome. If you would like, please feel free to share a bit of your story.

I'm glad you found some support here. Nights can be hard.