IBC lounge: roll call, support and just a good place to hang out
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Mamacure--I found these instructions about Mepitel that you might find helpful... https://www.rvh.on.ca/wp-content/uploads/2021/05/M...
Interesting because the rad techs removed the film after my last treatment and this says to leave it on for 2 weeks! These instructions don't seem to indicate that any weekly changing is necessary so not sure why my RO had them do so. Hmmmm.
I'm glad you're doing well. Happy Thanksgiving to you!
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Hi , All a little update :: turned out i have an infection they did a mammo and an ultra sound and i was good ! so a few weeks of antibiotics they are saying thank you to all that responded to my post. for all of you may you have healing and future good vibs coming your way !!
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ange7894--Great news! Thanks for getting back to us, and happy Thanksgiving.
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Ang7894, what a relief! That is great news!
LW, thank you for the Mepitel link that is exactly what I needed!
Happy Thanksgiving everyone
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Thank you all Happy Holidays !!!
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Sure is quiet around here!! How is everyone?
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Dear LW422, thanks for asking. My wife is getting ready for CyberKnife to II level axillar lymph nodes. Apart from that all scans are clear. Hope it stays this way and lymph nodes will be fixed. Saulius
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Hello Saulius; it's nice to "see" you. I hope you're doing well these days. Interesting about the CyberKnife procedure for your wife's axillary nodes; I haven't heard of that. Of course there's so much I haven't heard about when it comes to cancer.
I have read about CyberKnife for brain tumors and it seems to be very effective. I'm hoping that it will work well and not be too uncomfortable for your wife. Please let us know how it goes. Take care and thanks for the update. My best to the both of you.
Hope all you IBCers are doing well; check in when you can. I was just thinking that it was in December a year ago that I found the "pink bruise" on my right breast and the horror started for me. I'm going to wean myself off of the forum but I will keep up with this thread/ section. Honestly I'm tired of reading about cancer and I want some normalcy back in my life, but I want to keep up with this group. Hugs to all of you.
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Hugs to you LW! Hope you are relaxing & enjoying your days and not having to drive to MDA!
Did your skin do okay after finishing rads? Mine is holding up so far.
I’m using Purador hair growth shampoo from Costco. Can not wait until I can get a tiny pony tail going. Looked in my drawer the other day & boy do I have a ton of hair accessories which went untouched all year! Maybe by Summer I can use some of it.
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Hey Mamacure, and hugs back to you! Yes, my skin is doing fine; I didn't have any blisters or broken skin at all. The last week of treatment it did get red and after I was done my underarm peeled, but the new skin underneath was not painful. So I have to say that rads was the easiest part of treatment for me; the annoying part was driving a couple of hours to MDA and back every day for 6 weeks!
I hope you have an easy time of it. My hair is about an inch long all over and still has little "tufts" that stand out and look strange but I don't care. I'm so happy to have hair that I don't mind looking like a poodle.
Take care!
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A poodle, lolololol!!! I still look like GI Jane or a little elf with sideburns.
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LW, when it's quiet around here, I'm happy.
Those of us who've been posting for many years have seen more than a few people pass, so a quiet board is a good board. Of course, we're all here to help each other in any way we can.0 -
Hi LW,
I'm glad your skin is doing so well. It is interesting the difference in treatments. I was told at the very beginning it would not be easy, that my skin would slough off, and it was pretty bad. I guess that my treatment was worse because I did not have pCR in my tumor or my lymph nodes. I had one lymph node that could not be removed that they were particularly worried about.
I am trying to figure out life after cancer - but with the reality that I had IBC, didn't have pCR, and am at high risk of recurrence.0 -
Mamacure--this is a good time of year for that Elf look!! I'll bet you look cute!
Traveltext--I agree that it's nice that the board is quiet, but I'm so glad there is a place for IBCers to congregate. It's kind of a "lonely diagnosis" in many ways and this board was such a help to me when I was newly Dx'd and terrified.
Hey there, Blue. I feel blessed that my radiation was fairly easy to tolerate. I just hope I don't have any surprises from it down the line. It is strange being done with active treatment but I'm glad to settle into my "new normal." Take care.
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TT is right about a quiet board being more peaceful from hearing about more people passing. Just recently we lost our Philly on another thread and it always hits hard when that happens. I also think about PurpleMinion or Julie I think and losing her.
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Another person we lost who comes to mind is Amarantha, Paula, who really gave so much to members here over many years.
I wrote about her in August last year, in the context of mourning a social media friend:
https://advancedbreastcancer.net/living/grieving-v...0 -
Amarantha was a lovely soul. Brilliant, articulate, talented, deep. I will miss her forever, even though I never knew her real name, or saw a photo of her, until after she was gone.
TT wrote of the mystery in which we all exist here. I feel a kinship with many of us that's close to being a family bond, but our names and most personal details are hidden. We're simply faceless presences on the internet. We are what we write, but strangely, it's enough to draw us into an intimate circle of friendship.
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There are things I can tell people on this site and also the My Husband, My Love, My Life, My Cancer thread as well. I think when you don't have people physically there in front of you, we can tell each more than sometimes we tell family. Partly because I have never found anyone to be judgmental about what is said and we all can understand and empathize with different struggles from early to advanced stage cancers. Some of the things never reach family because those are things that might get judged. We don't have possible negative pasts with each other and it is great.
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"We are what we write", love that SBE, it really is apt. It takes longer to know people this way, but it really makes for a great love of the person and an empathetic relationship that picks up again when the person next posts. It's both weird and strangely satisfying. In an ideal world we'd all have a great meet up, if not a pity party, but this nebulous relationship based on our disease works for many of us.
Spot on mara, I too have "never found anyone to be judgmental about what is said" here. It's very much a focussed discussion and a place where we can come for help, or to give help, without the drama and extraneous matter that accompanies physical meet ups. That said, I'd say we all have friends and rellies to discuss things outside of this secret garden, and that's a good thing. And, yes, our pasts are immaterial. What matters here is what's immediate.
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MARA; loving your recommendations to "fill your days with pleasure" after all treatment is complete! I am finally understanding just how TRUE those words are! The facts and circumstances are what they are. The past cannot be changed. The only control we have is how we respond to what lays in front of us . Love life! Try to make a difference every day in someone else's life. Focusing on others helps lessen my anxiety every day. Still have my moments, but they are less each day and I am much better able to get thru them.
LW: I think we are at the same stage in our fight! Try to allow yourself to accept victory, even for a few minutes, Find an activity that you enjoy and can go to when diversion is needed to ease the fear! Mara says walking helps her. I've taken up learning the keyboard, something I did as a child, and wanted to resume for a long time now! I finally have the time. hoping you will find living post-treatment easier soon!
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Hey Denise. Glad you're doing well and finding new joy in life. I finished rads 3 weeks ago and my surgery was 3 months ago; so far things are going well. I honestly don't think about cancer much and I'm settling back into the routine of life.
I hope everyone still in treatment will soon put it in the past and get busy living!
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Even though I still have appointments and scans and infusions of Herceptin, I really don't spend much time thinking about my cancer. Since I have been dealing with it non stop for 7 years, it is just a part of my life now. I can still walk a long way if I want, have gained some weight but enjoying my food and exercise. I tend to have more regular life worries than cancer worries now which is good. I do tend to be depressive but again, not related to my cancer but just some stuff going on in my personal life. I am gradually getting over some of that stuff as well.
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7 years none stop, Lord have mercy Mara! Glad to hear that’s not all you think about.
Happy to hear you are doing well LW! Miss you.
I am still in active treatment but think about it less than I used to. I used to wake up & pray it was all a nightmare.
How’s everyone’s diet? My joy used to be a pastry, a croissant but afraid of too much carbs, getting tired of green tea & salads…….cut out most sugar but some dark chocolate. Stopped ice cream except a bite here & there. I still lov a good toast but eating more oatmeal.
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Hey Mamacure; how are you these days? I need to check the radiation threads and keep up with you. I'm doing pretty well; feeling emotionally happy these days and loving it.
Girl, my diet needs work. The holiday goodies are just too much for me, so I'll have to do better when the temptations are gone. I guess I'll never give up my favorite foods, though... I found out this year that life is too dang short to miss out on cookies. Hugs to you!!
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Hugs to you too LW! Yes life is too short to miss out. I am doing good, rads are moving along fast.
So glad to hear that you are happy! Way to boost your immunity! Woop woop.
Enjoy the Holiday cookies!
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p.s. I can see that the past chemo is out of the body judging by my nails. Brown chemo nails are at the very tip, being replaced by healthy nails. Too bad I have to go on Xeloda but hopeful tha it will be renewed again after.
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I didn't have any changes in my nails with chemo; not sure if the icing helped or if I was just lucky. My hair is growing pretty fast but is weird looking. But I'm glad to have hair!
My "radiation field" is fading and my surgical scar looks pretty good. I'll see my PS in February and we'll discuss whether the end of the scar needs a small revision. It pokes up a little and he said that it could be "fixed" in his office (no surgery), but he thought rads might tighten it up.
Now I'm trying to decide whether to go with a prophylactic mastectomy on the other side. Louise is lonely since Thelma left and she's getting on my nerves.
Not sure if I really want to go through another surgery, though. 0 -
The hair I have grows back fast. Whole brain radiation caused some permanent hair loss so I wear wigs, usually short ones as they look better. Don't have any nail issues that I did not have before cancer. One of my ring fingers can split down the nail so I tend to keep nails short.
LW422, love that you named your breasts, that is awesome. Were you planning on reconstruction for the mastectomy side or possibly getting a silicone insert. I still have my left breast and an insert that makes them look more even, I could have had reconstruction a couple of years ago but the process of getting a tissue expander and having to put stuff in to make the skin stretch did not appeal to me. I have a uniboob and times I don't wish to wear the prosthetic breast, I just do not war one.
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Hey Mara. You are a better woman than me if you can wear wigs! I bought two of them before my hair all came out last February and have never worn either one. They are just too hot and scratchy, and I felt so bad during chemo I didn't want anything else irritating me.
No, I have never considered any reconstruction. Like you, after reading about tissue expanders and all that horror I was convinced I'd never do any of that. I admire people who go through all of that, though. I just didn't want any more surgeries than I absolutely had to have. In fact, I wanted a double mastectomy last August but I was advised against it due to the IBC. It's so appealing to think about never needing a bra again!
I was told I could go back for the second mastectomy after 6 months post-rads but I've been waiting on everything to heal and settle to see how I can deal with being one-sided.
I hope everyone is doing well!
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