IBC lounge: roll call, support and just a good place to hang out



  • traveltext
    traveltext Member Posts: 1,045

    oh LW, people are still around, though perhaps like me they are waiting for the new format to become bug free. I can only imagine the problems women have with asymmetry, but what a huge decision it must be to have a healthy breast removed. There are other threads here on this topic, so hopefully you can talk to others in your situation.

    Like you, I was freaking out about lymphedema from day one since I had an axillary clearance on the mx side. This was nine years ago and I remain LE free. My method is to be scrupulous with treating cuts abrasions and insect bites on the susceptible arm. I used to fly with a compression sleeve but not these days because I read somewhere it’s not really necessary. Perhaps on a very long flight I will put it on. I assume you have taken base circumference measurements to monitor for changes.

    Anyway, good luck with the whole shit show. Just tick all the boxes for self care, take the meds and try to get on with things as best as possible. I’ll always be here. :- )

  • lw422
    lw422 Member Posts: 1,365

    Hello all. I hope this finds the IBCers doing well. Not much to report from me; so far, so good. I can't believe my mastectomy/ALND was 2 years ago already… how time flies, huh? I'm still having LE aggravation and considering having the prophylactic mastectomy on the uniboob but still can't make up my mind.

    I hope all the IBCers will check in and let us know how you are doing, please. I hate losing touch with all of you, who helped me through the darkest days of my life.

    @mamacure , I have been thinking about you and wondering how you are doing these days. I feel like we went through this together and I really want to know how you are.

    Sending hugs to you all.

  • blue22
    blue22 Member Posts: 170

    Hi LW. I'm glad to hear you are doing ok!

    I haven't been on the site for a while. I think the changes to the website spurred the need to move on, but I will still check in from time to time. I also find that when I start to post, I write really long rambling posts and then erase most of it because I don't know that my rambling helps anyone.

    I am also a uniboober. I rarely wear the weird little stuffed insert I bought at the hospital after my mastectomy. I'm glad I did not spend money on a more expensive prosthesis. Most days I wear shirts that are shaped so that it is less obvious I am lopsided, but honestly I don't care anymore if it makes someone uncomfortable. If I could magically erase the remaining breast I would do so, but I don't want more surgery right now if it is not recommended, which it is not in my case.

    I'm on Verzenio and AI. They affect my overall energy level significantly. I'm trying my best to move on and learn how to best manage life with the side effects.

  • traveltext
    traveltext Member Posts: 1,045

    Long posts are fine. Any post is fine @blue22 😀 Anyway, good to hear that things are plodding on okay for you. Loved the uniboober rant!

  • lw422
    lw422 Member Posts: 1,365

    Hey there TT, Blue, and any other IBCer who's following along. I have nothing much to say other than I'm glad some are trying to keep this thread alive. It was a real Godsend to me when I was first diagnosed and I'd like to be here for others who follow behind us, though I come to BCO less and less these days. I truly HATE this stupid forum layout; it's too hard to navigate and I can only imagine some newbie looking for help and trying to figure out this ridiculous mess. But it is what it is.

    Mamacure—you are on my mind and I'm so worried about you. If you are reading please pop in a "hi" or something.

    Take care, all.