January 2017 Surgery Group
Comments
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3bears - looks like a beautiful place to unwind and relax.
I agree it sounds like cording...I have been in therapy since the end of February...it helps! Unfortunately mine is pretty bad and the surgeon is going to try to release most of it during my exchange.
I also just got a compression sleeve because the arm I had my lymph nodes seems to be getting more numb...they feel I have mild lymphedema...the sleeve does make my arm feel better and I got a really cool sleeve print :-)
BTW what side of PA are you? I am southern Jersey, right outside of Phili.
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farmdream- did you get fitted for a night time one? I will have 3 total when the nigth time sleeve and pretty one gets here. I'm in the plain nude one until the others get here. It makes my arm feel so much better. I can't believe the difference! I still haven't told alot of people about the BC and nothing screams BC than a compression sleeve.
/. I have been wearing mine since Monday and so far only one person has asked about it.0 -
Vargadoll - I didn't know there was a night time one! I have to ask when I go to PT again. I haven't really told anyone at work about my BC...I have only been going into the office once a week for now and just got my sleeve so i will have to figure out if I am ready to say anything. On a fun note, I love the print I got (celestial), mine is from lymphedivas, my significant other's mom thought I got a really big tattoo :-)
Did you get a glove? I did but not sure I need or want it.
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Farmdream- yes I got the glove to. I have worn to twice. I don't know if you know that I have a child who is handicap. She's 27, weighs 116 and walks with assistance. I will probably be in my sleeve for awhile. I am always doing more with this arm than I should. The one I ordered looks like a tattoo to! I have always wanted a tattoo. ..careful what you wish for! The night time one is kind of squishy and soft. I was told on a really busy day I should wear it at night. So that means everyday I guess. I'm always busy and the surgery side is my dominant hand. Plus I have an old hand injury from 2004 that doesn't help the lymphedema and cording. It just adds more "back drag" to my stretch.
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PAGE 100 LADIES!!!!
Who woulda thunk It back in nov/dec/Jan that we would all be here in may having lived through 100 pages of ups and downs and throughs!!!
Keep plowing through, my survivors! I've been starting to exercise more in attempts to get in shape, and though I have a long way to go, the endorphins feel soooo good.
What I've learned since page 1: health is precious and something you have to work for. You have to take care of your body and mind to live your best life. I won't ever take it for granted.
When I need to, I can bow my head down and power through almost anything, knowing I am strong enough to come out the other side, wherever that may be, and learn to navigate new waters.
Other people's opinions matter less and less. I know who I am and what I've been through, and I Don't need outside validation.
Scars are the beauty marks of perseverance, and grey hair is kinda cool. I'm fully embracing the new me. It's not flawless but it's real, honest, and authentic.
Sometimes strangers can be your best friends. Thank you all for 100 pages of love. May your journey forward be filled with light.
Xxxxxooooo
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annoyingboob - such true words
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Vargadoll - i didn't know about your daughter, sending you both love and peace.
BTW - I always wanted a tattoo too and my surgery arm is my dominant arm with hand surgery for carpel tunnel...I can really relate...day by day
I am hoping for some relief after my exchange - surgery count down is on. I am scheduled for June 6.
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annoyingboob - yes! Precious friendships have been built by total strangers in 100 pages! U am thankful for each page and every sister here!
Annoyingboob - did you cough turn into anything other than allergy crap? I had a cough to and ended up with a sinus infection
(. The doctor said "with your compromised immune system " from the radiation it's not uncommon to get an infection of some sort. In my head I heard about echo "BC the gift that keeps on giving. ".Anyway, on a strong nasty antibiotic now. It makes me so hungry! Not what I need! LolFarmdream - she's not really mine but I have had her for 18 years...she's mine! Lol
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Had my final fill today bringing both sides to 450 cc's - plenty for me! Finally can choose a time for exchange surgery, probably July or August and it feels like a really big milestone! Thx for heads up on textured implants, annoyingboob, I asked lots of questions and my PS is on top of it, thank goodness.
Today my oncology surgeon's PA visited with me while the surgeon was tied up with a personal emergency, She said upon looking though my chart, " it looks like you have really been through a lot." Just that statement, from an arbitrary person, not family, hit like me running into a wall. I knew I would burst into tears when I retold the story to my husband, who had been waiting for such a moment. He thinks I've been taking the whole thing too lightly. I think he may have been right, but we hardly know when to let the guards down for fear of another surprise. But actually, that is just life. We have today and we have eternity We never know ahead, but we have this moment and we have to be present in it. Believe me, this tattoo stared back at me many times during hospital and dr visits, but I put it there for that very reason and it actually did help!
Much love, healing and sweet life moments to every one of you amazing ladies. I think of all of you often.
Beverly
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hi varga - I had that annoying cough for about 6-7 weeks, and then it just went away on its own. it was worse at night, so I think it was like sinusy stuff dripping down my throat - (sorry to be graphic) - but I was never coughing up green or yucky stuff, so I don't think it was an infection. some kind of bronchitis or allergy induced thing. the flowers are in full bloom here, so lots of pollen. but who knows - im just glad I can get a full nights sleep without waking up coughing up a lung!! xrt might have had something to do with it. I hope yours go away quickly on the antibiotics - fingers crossed - you have too much on your plate to sit around coughing!!!!
3 bears - love the pic. ive never been there, but its on my list to go. hope you are enjoying it and that you have nice weather, but don't get sunburned!!
bevmom - love the tattoo. I had bracelets made with my positive affirmations on them. got them on etsy and love love love them. never take them off. its just nice to have something right there to look at and ground you. super exciting to have july/august to look forward to!!
pugsmomma - I hope you are on the high seas with a big fruity drink and are able to relaxxxxxxx.
cording team - get on that and get it sorted. you don't have time for that!!!
dcbc - plant a flower for me when you are able to bend over again!! Im jealous of your green thumb - my garden is mostly succulents bc they are the only thing that I cant kill, lol.
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Thanks ladies. I'll call my PT when I get home. I'm glad it's nothing to panic over. It would've been nice if I could've known I would get breast cancer before it happened. I could've had both breasts taken without any lymph nodes. My right side is perfectly healed and wonderful. Oh well . Such is life
Pugsmama-- have a super time on your cruise!
I'll check in with you all later. It's hot out here on the deck.......
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Bevmomduck... I almost cried when I read about your experience with the PA. We get so caught up in the bulk of it and checking treatments, tests and the like off of the list that when you take a minute and look back, it is amazing the amount of stuff that we have been through in the relatively short time that we have been dealing with all of this BC stuff. Just breathtaking when you think about it! It must have been nice to have that acknowledged in such a way.
100 pages Ladies! Thank you for playing along and being there for each other each and every day! When I started the thread, I could never have imagined that we would get here and have so much fun doing it along the way! You have been some of the most supportive, incredible Ladies that anyone could ever have the pleasure of "knowing". I hope that someday we can all meet up and have a drink on the beach!
Love to all!!!
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I'm ready for the drink on the beach! What a dream to actually meet all of you!
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It would be amazing to all meet
this journey would be a lot more difficult and lonely with out you 0 -
Count me in! my dear friend who has sarcoma sent this to me...I think we all can probably relate to some part of it.
http://www.contemplatingcancer.com/youre-better-no...
Leaving for the cruise soon! I might stay unplugged so I'll post pics when I get back!
Love you all!!
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PugsMama - thank you for sharing the article. True stuff! It nailed so many of my feeling. Take lots of pictures and share when you plug back it! Have a peaceful rejuvenating cruise!
Bevmomduc - love the tattoo! I have wanted a tattoo for years but could never decided on one or where. My sister died very unexpectedly (insulin pump failure &aspiration) almost 2 years ago. We were only 11 months apart and we would always be the same age the month of June. After she passed I decided on a tattoo and I wanted it on my right wrist. I'm so mad at myself for not having it done now. Since the SNB can I get a tattoo on that side????? It just hit me when I saw your tattoo that I probably can't get one there now.
Beachbabyk - many many thanks for starting this group. You ladies keep me grounded! You all are my glue!
♡♡♡♡♡♡♡♡♡♡♡♡♡♡
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Good morning ladies. I'm here to report another complication and delay on my journey. Just as I was finally about to see the PS next wed to set up a June date for my TE surgery, I have a swelling problem. Now I can't get my reconstruction surgery until fall! PS says I need months of physical therapy before we can do any surgery. Apparently I was supposed to be getting this all along. Did all of you get PT for months? My BS sent me to a PT in January. I went to the PT--- she taught me how to do manual lymph drainage. She said some people only come to see me one time. She never said anything about me coming again. I just did stretches and manual lymph draining massage at home. Every time PS saw me he said that swelling would go away on its own. I feel like I will never get boobs. So I guess it's not cording. And I pray to GOD it's not lymphedema.
3Bears
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3bears- so sorry! My PT or PTA has been seeing me once a week since April 28th. I should have actually started on March but the PT's that specialize in cording and Lymphedema are swamped! How on earth do you do your lymphedema massage??? My left hand just isn't as coordinated as my right. I had no idea how "right handed " I truly am! Get those PT appointments going! I will honestly tell you PT is the highlight of my week. It feels so good!! The PTA also did a little light cupping on my scar and wow!! What a difference it made with my swelling. My scar was really tight which has lead to some of the cording and swelling. Breath deep and know your boobs will be fabulous! That doesn't make right now any better just know that boobs are in the horizon!
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3bears - sorry to hear your news :-(
I asked my PS about getting physical therapy, he didn't initially say yes so I asked again. I started about six weeks after surgery, I have been going for about 3 months, twice a week. I would have started earlier too but it took almost a month to get my first appointment with a lymphedema therapist. It hasn't resolved my cording and I only have mild lymphedema, it seems like mild swelling to me, not sure if they even officially consider it lymphedema but I did get a lymphedema sleeve which does seem to make my arm feel better.
I hope you get some relief and the swelling resolves sooner than later.
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ugh, 3bears. I'm sorry to hear about your setback. But better to take care of everything and get you in top form rather than rush into anything. I guess we will add a little gym/PT areato our cabana so at least you are in a nice cozy space while you sort this swelling out. Is it your arms or your chest wall or everything? Regardless, glad the professionals are involved and here's hoping they will get you back on track!!
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3bears -- I am so sorry!! I stopped my PT once the cording resolved, so I don't think this is a case of you "not doing it right"... but for the life of me I DO NOT understand why the surgeons don't automatically send patients to lymphodema PT's... esp when pain, cording, swelling and/or limited range of motion are present!!! Surgeons seem to most often be like the proverbial carpenter with a hammer... everything is a nail.
Rest easy and enjoy the PT... it really is such a wonderful experience.. my techs were amazing, and it's more like a weekly massage than a medical appointment... sending lots of love, encouragement and (not my strong suit, I'm afraid) patience your way... hope the swelling resolves quickly and your boobs are scheduled SOON! Here's a lovely summer drink for you... Paloma, anyone?! XOXOXO
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I had to look up what a Paloma was - looks delish and so refreshing!!!! It's so effing hot here, I would love a steady stream of those!!
But, bc we can't ever have nice things again, I may have to make mine a virgin:
http://www.shape.com/lifestyle/mind-and-body/one-s...
Xxxoo
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Geezzzh! I was finally at a time in my life where I can have a cocktail after dinner and enjoy. I never have been much of a drinker because I'm such a light weight (husband called me a cheap date when we were dating ;o) ) I haven't had a cocktail since surgery . I have been worried about the dang tamoxifen. You are so right Annoyingboob! We can't enjoy anything nice! Including my pretty bras!
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Thnak you for the lovely drink Dcbc.! It looks delicious.
I'm not sure what to think about alcohol. Everything I read says no more than one a day. But my survivorship expert (or whatever you call her) told me I can drink 2-3 drinks on fri and sat . Which is all I ever do anyway. Actually I barely drank anything from November diagnosis until chemo ended 6 weeks ago. The way I'm playing it is binge drinking is definitely over for me. I never drank everyday anyway. If I'm out with friends I'll have 2. Three on special occasions. But I'm not going to drink every time someone wants me to . I think this is a good balance to make me happy.
My arm and chest is feeling lots better with stretches up the wall... I see PS tomorrow. I'll report when I'll finally get my TEs.
Also, I read that women who have night sweats and hot flashes from the tamoxifen , experience less recurrance . This isbased on a 2008 study done in Britain. This has made my day! It's a sweaty bed in there at night.😀
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3bears - so good to read the stretching is helping. I guess the night sweats and hot flashes are a good thing. I'm not having either and I'm on my 3rd bottle of tamoxifen. I am back to freezing at night again. Sleeping in long sleeves and socks. I actually thought that the tamoxifen might balance me out and make me at least normal at night.
Can't wait to find out when you you get yoit TE'sleep Boobs are the horizon!
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Greetings to all January sisters!
My name is still written here on the surgery dates and this is where I started although my surgery finally took place in March. I 'm more active in the March Surgery Group, but coming back here often and read your news and I'm always happy to see familiar faces even if I don't write much.
So, I had my bilateral mastectomy with sentinel lymph node biopsy and tissue expanders placement on 28th of March. It was difficult, especially while I had those damned drains, and the first four weeks were awful, but things are getting better day by day, it's already 2 months since the surgery and I'm almost back to my everyday activities.
TE still hurt from time to time, and the iron bra feeling is present most of the time, but at least now I can sleep again on my sides, something that I missed terribly as a side sleeper.
Great news is I won't need chemo! I swear for at least a couple of days after I got the news I was lightheaded and happily dizzy like a 13 year old falling in love for the first time LOL
Of course, soon enough I found myself forced to deal with another test, the BRCA. My onco strongly suggested to do it, and although it took me a couple of weeks to gather my courage, tomorrow morning I'm going to have it.
I don't even want to think what will happen if I 'm tested positive. I'll just hope and pray it will be negative.
Apart from that, I'll be on the tamoxifen train soon enough.
That's my latest news, gals. Big hugs to all of you!
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Hi my lovely friends! I can't believe 100 pages!! Like many have said...cannot imagine having gone through this without all of you. I'm so glad to see everyone plugging along...I know there have been some setbacks for each along the way but how lovely to have each other to share with. I just got discharged from PT for the 2nd time on Wednesday so extremely excited about that! I'm really hoping it does not return again!! Back in November/December I never would have imagined still dealing with things in June!! I guess we all found out pretty quickly that it never moves along as fast as we'd like...the old waiting game!! Just wanted to drop in and see how everyone is doing and of course remind you that you're all so special to me and never far from my thoughts. Wishing all continued healing and nothing but love.
Meredith
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Hi Daphne, its good to hear you are doing well and on your way!! Fightingirl, that was such a lovely message. Congrats on "graduating" from PT! Enjoy your summer! I agree, it so lovely to have all these beautiful women to share our journeys with. Now it is I who have a setback. My right implant has flipped!! The projection part is facing my back, and the flat part is facing my front. Not a good look! The ps wants to "wait 6 weeks and do nothing, maybe it will flip back on its own." My thought: Is he freaking kidding me?? Just let it be, maybe it will flip, then what....it flips backwards again? He actually didn't think that was the issue. I saw him today and he said, you are 6 weeks post op, I think you are just noticing the swelling has gone down. This is how it looks. I looked at him incredulously and told him NO, no, they were both fine, perfect. I woke up Wednesday, and this one was totally distorted, flat in front like a table, and you can grab the whole edge of it from the side, and feel the round part facing my back. He has already said he wants to revise the scar on that side, which would involve the OR, so why wait 6 weeks? I am worried the pocket will heal wonky with the implant backwards. Also, a knot on the flat part of my chest on the left side above the implant. He said its the edge of the implant I am feeling. However, I can take my hand and move my implant while holding a finger on the knot. The knot does not move with the implant. I think I will call the bs Monday and ask for imaging. I really don't want to wait 6 weeks with a backward implant. It is uncomfortable!
I haven't heard from Pugs lately, is she still on her cruise? It has gotten a little quiet on this thread, I suppose everyone is getting fills and waiting for the next step and enjoying their summer! Has anyone gotten their exchange scheduled? I pray for you all often, and am so grateful for each of you sharing. It makes it so much less scary knowing we have each other to compare experiences, laugh, cry, and root each other on. Blessings and love to all!!
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aaaacccckkk shoregirl!!! Just when you are celebrating being done!! I wonder with time if you can manipulate it back around - like how they move babies that are breech? Maybe gentle massages ever day?
There was a gay guy I worked with awhile back who got implants to make him look more muscular. His ended up moving all over his chest and ended up by his collarbone - poor kid. I hope that doesn't happen to you!
I've been bed bound for 48 hours. Excruciating left pelvic pain to the point I was dry heaving. Couldn't straighten my legs or wal. It's just now getting better, so I'm guessing I ruptured an ovarian cyst or some fibroid went wacko on me. Have any of you had ovarian cysts before? I'm not on tamoxifen, so I can't blame that. Glad to be feeling a little better so I know it's not appendicitis, but Jeez that hurt!!
Good to here from fightingirl! Our year is halfway done ladies!! Keep forging ahead.
Xxxooo
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