DIEP 2013

Anonymous

Yup Kimdy....all the time, unfortunately. I don't know what to say to people. I know my initial reaction was "how soon can we take them off me?" If they were going to try to kill me I wanted them gone. But it didn't take long to understand that feeling of amputation so many of us feel. How do you explain that to someone? I never consciously thought or felt that much for my breasts. I never consciously thought, "these are what make me a woman." But once I had only one....wow....I wanted a replacement asap!



I am a long delay (2years) too.....people have come right out and said they don't know why I bothered. whatever....I hope they never have to understand.

kuka21174923

Flat stomach after DIEP? You bet! I had to lipo my live handles during stage two, but my stomach is flat!!

Firedragon, I'm so sorry. That really stinks! We're here for you.

About the pictures. I wanted to know because I would post a pic in here, if it's allowed. I do t care who sees it. I've been very open about it from the beginning. I don't have a job that I could loose. I would also like to help other women that were in my situation by maybe seeing them before they're 100% healed. I just have no clue on how to do it. I tried doing the copy and paste but it's not working:(

goldie4040

Copy and paste always works for me in a PM.  Maybe it is different here. Kuka, if you like you can send it to me, and I will post it for you.

mammalou

Well I went to BS appt for trouble making good breast today and found out I was supposed to have had an MRI first. Kind of a waste.



This is the week I'm hoping for my abdominal wound to close and to stop the compression garment. Keeping positive thoughts!



I am also a long reconstruction project and sometimes wonder myself why I keep going thru this. My husband will love me with or without them. It is something in me that just wants to have something there. What I have doesn't look great but in clothes I feel normal.

Jeannie57

Mammalou, sorry about the MRI! I am so happy your abdomen is healing, though. You are a HERO! I don't think my boobs are very good-looking, either, even without complications. There are so many scars from so very many things, plus little broken blood vessels from DIEP. Add a big mark on my torso from a blister or whatever it was and the huge incision around to my backside and feeling attractive while nekkid just isn't happening. Once I put a bra and some clothes on, though, I feel much better.

mammalou

Yes, nekkid is not good, but I feel great in clothes. That's why this reconstruction is good. It makes us feel good and whole!

lahela

Cstrong - sending you gentle hugs and all healing wishes.

Zoemom - I had pain like that, still get it occasionally after 6 and a half weeks but nothing like at first.

FireDragonII - Yay for independence, boo for sucky path report. Hope it all goes well for you.

Thanks Bailey and Deb for sharing the pic - it is wonderful to see what you all look like.

Kimdy - yes, and it hurt like heII. It was my mother. She has no boobs after BMX with no recon and asked me why I was bothering. I choose to think she meant well and just didn't want me to put myself through it all or felt guilty about my getting BC or... whatever. I decided it was best not to take it as it seemed. My sister, who is younger than me, had a UniMX and no recon yet ($$$) and she is super-supportive despite being jealous as all get out. Go figure! It's your decision, because it's your body. Don't let anyone pressure you or make you doubt your choices. *hugs*

Mammalou - positive thoughts for you!!!

Speaking of feeling/looking good - we had friends over for dinner on the weekend and she had visited me loads in the hospital and saw everything, so she knew what was going on underneath. She just looked at me and said that she understands that the word cancer is going to ring in my ears for the rest of my life but at least I can look at myself in the mirror (clothed) and not think about it, just think about how damn good I look! Made me feel so much better about myself.

Tracy516

My blog; I put up pictures for all to see plus I don't have a job I'm a stay at home mom.

http://trakoh516.blog.com

Anonymous

Jeannie- kudos for getting back to the food pantry! Put a tally in the victory column

lahela

Back from an unscheduled visit to the PS - noob with its swollen, sore spot was getting more swollen and more painful then this morning was red and hot. Infection time. Starting amoxicillin and if it's no better in 48 hours I go back to get a different prescription. This roller coaster never ends!!!

sweetpickle

Lahela- Oh no! I hope it clears up soon for you.



Bailey- I called PS office to get a referral to a LE person, they referred me to BS. I call BS office and they tell me to call PS back because my nodes out would cause lymphedema in arm but not trunk. So now I am waiting on a call back from PS office. Meanwhile my stomach is hard and rou d like a basketball and I have sharp shooting pains in my left side which feels like nerve pain. Very uncomfortable today. Does this sound like what happens to you? Im so confused on what to do and who should be doing it.



Mamalou- Hoping that incision closes up for you soon!

Anonymous

Sweet....we call this being medically abandoned...trying to figure out "who cares" can be extremely difficult. However, when you have mx they can remove intramammery lymph nodes as well as axillary lymph nodes and either can cause it....also if you had radiation it can damage the lymphatic system in the trunk and cause LE. Unfortunately I have learned thAt most BS and PS are not very learned in LE the LE folks are doing what they can to educate but it's still kind of in the dark, if you ask me.



However what you describe is not how mine manifested. Mine was two things..a large seroma (fluid filled sac that you can hear sloshing around and moves like a water bed mattress with waves) and my truncal lymphedema is more along the rib cage under the affected breast . Neither was ever hard.



I am concerned about the hardness and the size you are describing in your tummy. Would it be noticeable on a photo? I think you should call PS or send them a pic...or both. ...My thought is its linked to DIEP most likely....anybody else have an opinion?

FierceBluebird

Firedragon, many hugs and try to stay positive about having the surgery and catching it and hopefully you will sail through chemo.

DebDylan, your pretty hair will grow back and donating it is a great thing.

No interest at all in this forum becoming a show and tell. I've gone to support groups that are like that and fully understand how proud women are for all they've overcome but feel there are other forums better suited for photo sharing.

Everyday I still regret choosing to do this surgery. I can't say I even like my reconstructed breast. Maybe next year humpty dumpty will want to be put together again.  But I'm also starting to get the mindset of why bother. Just saw my hospital bill for my "debridement" and it was over $38,000.  Can't imagine what all this surgery is going to end up totaling. 

In my plastic surgeons office I looked at photo after photo of "perfect" cases. Some women you could hardly tell even had surgery. I never expected and knew I would never look that good, but was hoping to just be made "whole" again. It's kind of like shopping for a car online at a Ferrari dealer, and after you fork over $200,000 and a lot of blood and pain, a pile of smashed up junk gets delivered. Actually, make that half a pile.

It makes me a little hesitant to try that again.  But some women drive around in Ferraris and love them. I'm more like half a Smart-car that got T-boned!

Okay, need to go get caffeine and get happy!

sbelizabeth

Well, carp.  The cellulitis is back.  I took off my clothes for a shower yesterday and found more glowing red areas, and had a miserable fever all night.  I took an antibiotic as soon as I saw it yesterday, so hopefully we can nip it in the bud, as Barney Fife would say.  Seeing the PS (or somebody--it could be the infectious disease guy) today.  My hope is that oral antibiotics will knock it down and no one wants to put a PICC line in for vancomycin.

Thank happy thoughts for me today--!

nihahi

I wonder if manuka honey would work on a stinky summer cold??? I think my nose is about to fall off!!!!!

sweet....such a run around for you! I'm in no way a lymphadema expert, but surely, it's related to lymph node removal "aka breast surgery", even if it's truncal????? I cannot understand why the BS is sending you back to the PS..it sounds like b.s. from the BS to me!

lahela....love the way your friend "gets it" and supports you! Perfect comment too...."ringing in your ears"....btw...what the he** is going on now? Antibiotics....crap!

Going to throw my thoughts (re: photos) out here, along with some future guidelines for myself. I COMPLETELY get the "feeling" that we are sharing our private thoughts/fears/smiles with ladies who feel like our closest friends, in a "private setting". Unfortunately, this is NOT a private place, as many of us know, from finding our way here via "google". I don't know if others realize it, but often, there are "spammers" trying to post on our site. The mods work very hard to keep them away....but the reality is, we are part of the "internet cyberspace", and once a photo is put on here...it could go anywhere.  Your intentions of wanting to "share the journey" with others as a way of helping, could result in someone "sharing you" in a way you never intended.

My suggestion to those who want to share their recon photos, is to do so via the "photo forum", as that site is much more protected and access screened. For myself, I realize I should not be posting photos of "people", and in the future, will try very hard not to. Movie...hope I haven't caused you grief by posting photos of you!!! 

Gotta go find more tissues for this drippy nose.....have good days ladies!

nihahi

sbe...missed your post.....CRAP AGAIN!!!!!! What the hey is going on??????

FierceBluebird

Sweetpickle, if you have a good family practioner or internist it might be a good idea to start including them in your medical team so they can monitor your condition and be a sounding board for what's going on.

They will be able to refer you to the right people and instead of your surgeons bouncing you around, your GP can intervene.

Good luck!

Tracy516

Everyone HUGS!!! Dammit!!



Appt at PS .. No gym yet til 8 wks .. I'm 5. Yes to my birth control pills. Lump under left foob is smaller .. Good sign. Come back in January to talk nipples, lipo and or reduction if I want. Ugh..



I start back kid sitting tomorrow. One child out of the 3 I had is coming back. Oh well I really don't think I could handle that many now. Hubby needs to pull the over time;)



Sunshiny day here in New Jersey. Gonna go for my walk!

FierceBluebird

sbel, I missed your post too! Ugh! Sending healing vibes your way! Hopefully they did a culture and know what to throw at it.

Has anyone heard from Damiana?

Nihahi, honey does work well for colds.  Hot Toddies work best!  A cup of tea with lemon, honey, and a shot of whiskey to kill those nasty germs.

nihahi

CRAP AGAIN#2...I keep missing posts!!!! Bluebird....we likely all have days like "what the hell why did I do this".....you are absolutely entitled to yours!!!!! I don't think anyone here has done it for pure vanity, (not that you were suggesting that mindset). I am sooooo far removed from "immediate recon" almost NO ONE, other than my hubby "gets it",  ....and sometimes I even wonder about his thoughts. Sometimes the "whatever you want, dear" comment feels like his views on what's for supper! He could care less what I put on the table, it's all "food" to him. Even the very few friends who have been nothing but supportive, readily admit...they don't fully "get it" either. I can't explain it, but like jeannie said....it just makes me feel "whole and healed" from the whole mx (aka breast amputation...yep), chemo, failed implant fandango. It just does....But I also recognize...the amount of time it takes us, to get to whatever emotional "end point" we will end up at....takes a different amount of time for each of us, and emotions have a way of ebbing and flowing until they find their way home.

nihahi

oh my lord....can't keep up today!

bluebird....I was thinking of smearing the manuka on my nose, not eating it!!! Since I don't like tea, and don't like whiskey....I'm seriously considering coffee and kaluha....while smearing honey on my sore probiscus. 

Tracy....happy walking today....could you do some for me? I have no zip today to do any.

sooooooo.....I now have probably missed another batch of messages...not coming back to repost again...(until later).

((((X)))) to all!

Morningsun1

Good morning ladies in the Falpper land! I had a great session with my PT person yesterday evening and have been thinking about sharing it with all my flapper sisters here, and the first thing I read this morning was Sweetpickle’s posting re: bloated and hardness of tummy. What I have experienced maybe only one of the reasons, but hopefully it will be helpful for most of you.

I was laying there waiting for the therapist to coming and my eyes drifted to the posters on the wall. They were two pictures of the human lymphatic system. When she came in, I asked her some basic question and then it dawned on me that my flap surgery could have messed up all the superficial lymphatic system on my abdomen. So I asked her if that the case and could that be the reason that my tummy feels more bloated and tight in the evenings. She said definitely possible. So after taking care of my other issues, she taught me a breathing exercise and did (showed me how to) massage on my abdomen to help drain the lymphatic fluid. Afterwards, my tummy felt like it does in the morning! The breathing exercise is very easy: lay on your back breath in and let your belly button rise as high as it will go, breath out and let your belly button go down as low as it will. She called “belly breathing.” The massage part is more difficult to describe. Bailey is correct that most BS and PS are not very learned in LE and the LE folks are doing what they can to educate but it's still kind of in the dark. Here in the Burgh, our LE specialists work in the “Women’s Health” rehab clinics and I have met a couple of physical therapists coming from a long distance to get training here. Find one in your area, they can really help you!

I borrowed the “wordy girl” hat for this, bailey6760

goldie4040

SBE, noooooo!  I wonder why?  I am glad you are seeing the doc immediately.  You are so strong and healthy.  I wonder where you keep picking it up from?  Prayers going out that this will pass quickly.

goldie4040

Bluebird

The last I saw of Damiana she had an early mini revision to fix a hole in the new foob, and maybe something with her tummy incision, don't remember.  She was feeling great and getting the kids, and herself ready (she was registered for graduate school) to start school.  I bet she is doing great, and is just too busy for a visit with us right now.  I guess that is what we really want, is for people to forget cancer, and move on.  

Morningsun1

sbe, I was all healed and out of the blue, my belly button was infected on a Friday evening. PS phoned in antibiotic on Saturday morning so things were under control. I felt there was fluid traped in there so went in to have it drained. PS took a swab for culture. Results came back with some kind of bacteria that was common on human skin but needed a different antibiotic to handle more effectively. With the new antibiotic, infrection cleared up in no time. Good luck to you!

Jeannie57

Bluebird, in trying to put myself in your shoes, I understand your feelings.For me, trying again after what you've been through would be a very difficult step to take. Living with half a smashed up smart car would be hard, too. Bless you in your decision-making.



Sbel! Not again! Dang! I hope the quick antibiotics knocked it on its a$s! Prayers for you today.



As for photos of boobs/noobs/gloobs, I doubt the moderators would allow it to happen here. I would be very surprised if they did.



Nihahi, yuk! I hope your body starts kicking that cold out soon. It usually takes me two weeks but that was pre-bc. Who knows now.



Tracy, you sound so good! Enjoy your day! Hope the little one cooperates.



Sweetpickle, my radiation oncologist referred me to my LE therapist. Any chance you could call one of those? There is always the National Lymphedema Network (I may have the name wrong). But I agree with Bailey that PS's and BS's don't always know much or care much about LE. Even my PCP doesn't know much about it. My RO was very knowledgable. I also agree with Bailey that what you're describing could be something other than LE and you should get it checked out. Hugs.

Jeannie57

Lahela, prayers and good thoughts to you, too!!

sherry35

Good morning ladies,

So much going on! Healing hugs and prayers for all that need them!

I finally feel like I live in the land of the living again. I've been driving and went shopping and am enjoying my everyday activities again!

You ladies inspired me - I bought a bicycle! I've been looking for one for a while and found a great deal on a great bike for me! I'm still a little unsure about riding with my open wound but I will be on it soon.

Mammalou was so right when she said once it starts to heal it goes fast. In one week I shrunk 3 cm , 1.5 cm, and .5 cm! In one week! Seeing progress is super exciting!

Bluebird- I like the red dog but you will know which to choose when u see it!

I'm off to do more unpacking!

I hope everyone has a great day!

Sherry

hrf

So much going on here.



Sbe, get that cellulitis under control. Is it possible that it wasn't 100% cleared up the first time.



I agree that docs don't know much about LE. My hospital has a LE clinic and the nurses there are wonderful.



Bluebird, don't blame you for feeling as you do. This is a tough surgery and having any part of it fail is devastating.



I agree we do this because we want to feel whole again. People who have not gone through this don't understand. My ex's wife just had a revision to her breast lift. She said to me......isn't it amazing what we do for beauty? Good thing I didn't have something in my hand that I could use as a weapon.

Anonymous

If you have a nurse care navigator in this whole fandango she or he should be able to help you find an LE specialist (either doctor or therapist) in you area.



Sbel...stop harbouring criminal bacteria....So sorry! Since we are on the subject of the lymph system today...I wonder if the treatments and sx you have had over the last couple of years has anything to do with it....are you quite literally harbouring the bacteria in some slow moving "back water" area of the system? Or does it not work that way? I don't recall you talking about LE ...cannot remember if you have it. Anyway (just trying to get my hat back from TammyT thinking of you!