DIEP 2013

kad22

Hi ladies

Haven't posted in awhile but have been keeping up with the discussions. Welcome to those who are new. Just have to say I am fairly new here and these ladies are fantastic.



So I still have one drain in and it is so sore and seems like it will never come out..so much draining. So depressed tonight couldn't stop crying not even sure why. I love the results of my surgery just tired of the whole healing process.



Good luck to those who have surgery this week.

Hugs to all.

Kelli

nihahi

Hang in there kad....sorry you're having "one of those" days, but, I feel they are a natural progression of post-surgery recovery, and tears are better out than in!!!! Is your ps aware of the "painful" part of the drain thing???? Maybe there is something that could be done to help it be less uncomfortable. 

Moviemaniac

Kad....what you are experiencing is what I call the 3rd/4th week blues.....remember: two steps forward with an occasional step back.....hang in there, it really does get better.....



Mammalou-glad you made it to the wedding, and had a good time.....good on you!



Welcome to the newbies......this is a great thread.....lots of wisdom, good advice, and crazy, whacked-out humor.......



My take on necessary items for the hospital......only what you can fit into a make-up bag......I wore my birthday suit while in bed, and only put on a gown (or two if out in the hall walking) when walking around room.....funny story my best friend JUST told me about my hospital stay......the day I was moved from ICU to a room on the surgical floor, her husband, who is a Dr. with privileges there, came in to see me and see how I was doing......apparently I was very pleasant to him, and even offered to show him my new "girls" and all my battle scars.....of course, this was at the same time that I was observing bugs crawling up and down the walls of my room, courtesy of my morphine drip......he was so taken aback (he's a Onc. Urologist, and is NOT my Dr.) that he said he had surgery and quickly excused himself.....he JUST told his wife....and she immediately called me, laughing so hard she was crying......poor guy.....of course, I remember none of this......



Good luck to all going in this week.....Robyn....hope you are doing okay.....



So grateful to have this "safe" place to let it all hang out......



Love to all.....



Namaste and God Bless - Jackie



PS: My nap was wonderful.....I just hope I can sleep tonight!

liefie

kad22, sorry to hear about that painful drain - ouch. But better to tolerate that than get a seroma, and Nihahi has good advice re the pain. Nothing gets me down faster than pain, and I can totally understand why you feel so down. Hope you can get it under control asap - best wishes!

Annm1020, there is nothing wrong with you, and I'm sure you looked beautiful. Those people have a huge problem, and I still cannot believe the way they treated you. Denial is not a river in Egypt, but they probably think it is - LOL.

Movie, that hospital story is really funny! That doc's face must have been a study when you offered to show him the new boobs . . . hahahaaaa! Maybe next time you should refuse that morphine pump - who knows what you may be capable of under the influence? You may be wandering naked down the passages, looking for those hot springs . . . LOL!

Gini23

Good morning, ladies!

I know some of you are anxous to get on with things - but remember it just takes time to heal.  Before you know it this will all be behind us!  I don't mean to discourage, but I am still swollen in the belly/pelvis area 4 months out from DIEP.  I am so happy for some of you that you went so quick to a flat belly.  For some reason, I am "flat" where the flap was taken and the scar area is the smallest part of my abdomen, but above and below I pop out.  My PS said that my muscles might be slack and it it time to start toning, gently at first.  So I am back on my workout regime and doing lots of planks!  He said if it does not seem better next time I see him (late August) then perhaps he'll prescribe PT.  In the meantime, my sister is a personal trainer so between her and my Jillian Michaels dvds I hope to get there on my own!

Nihahi, I think it was you who mentioned that maybe the exercise restrictions post-DIEP were for people who had rads. I did not have rads and my PS had me on restrictive exercise for 3 months - walking only until then.  Then I had a couple weeks to interval jog/walk and do some core exercises before stage 2.  Good news is 1 week post stage 2, I am free to do whatever feels comfortable for me - without going too hog wild!  lol

All that being said, yesterday I noticed that my pants are falling down!  I do still have a curve at my waist, but my pants were sitting on my hips and I needed a belt to hold them up which I have not needed in quite some time!  So time to cull through the closet for the pants I was wearing before BC became part of my life (after which I gained 25ish pounds, which was just after losing 18 by working hard at it....)

Welcome aboard to Bluebird and other new ladies!  You will find many answers to your concerns, plus a whole lot of laughter, love and support here.

 Jeannie

Gini23

Crewzer - that is an amazing story!  I can't believe you were doing this prophylactically and then they found cancer....  WOW.  

I have to wait 3 months post-fipple-recon to tatoo.  Somewhere way back in the thread I asked about the tatooing and got lots of great links from ladies.  Maybe it would be worth getting those put up on the top of the page.  Tatoos by Vinny is "THE" best from what I hear, if you can travel to him. My PS works with a local artist in Boston, but it costs about $1,000 and maybe you can submit to insurance after.  I decided to go forward with the fips anyway, because my football paddle was pulled in ("purse string") and now I have a smaller flap area that becomes the areola.  My hope is that once all is said and done, the fips themselves will not protrude so much (not really so bad now, and he promises me they go down even more) and the tattoo (done at PS office) will completey cover the flap, so I will only have small horizontal scars left from my original BMX.

Gini23

Damiana - love the sound of your flower tattoo!

lhw

Lilyn, I will be 60 in a few months, and like you, I put off reconstruction. My bilateral mx was November, 2011. One of my biggest concerns at that time was comfort in my body. I worried about not having free movement (not that I'm a big exerciser, but I do like to be active); about the perpetual bra feeling of some surgeries; and concerns about never being done with some alternatives (implants needing replacement). I healed quickly from my mx, and my body did feel comfortable physically. I wasn't comfortable though with forms and the clothes issues, and seeing myself from above or in the mirror made me a bit sad. I'd shake my head and say how did this happen? I wear glasses, and one hearing aid. So, every time I left the house for work, there went on the glasses, hearing aid, and boobs (and the check to make sure they wouldn't slip or be seen). Traveling was uncomfortable also. I was not comfortable staying with people and not wearing the forms with my pjs. It was my personal issue and I didn't want to share it, or at least I wanted to be in control of who I shared it with and when.

I discovered DIEP about a year ago, and liked the idea that I'd continue to feel that physical comfort in my body. And, post surgery, I do!! 

damiana9

Kad- I am sorry you are having a rough time. I think you can pretty much blame the drain (although- if it's draining of course you still want it in there) Hopefully this week you will get it out- how much is it still draining? Once mine came out I had more freedom to get around and that made me feel so much better. Are you still walking hunched over? I am- and it is frustrating that I look like a caveman still. My tummy is soooo tight though, that i just can't straighten out!



I keep thinking of Goldie's issue with the iron bra feeling- and I can't help but compare it to my abdominal tightness- I have been calling it my iron belt! It feels like I have a 4 inch thick belt on all around my waist that is waaaay too tight and can't be loosened. It is not painful but it certainly is uncomfortable!

Gini23

Gotcha13 - welcome aboard the board!  What a big day for you tomorrow!  There are indeed silver linings...  my Stage 2 brought with it some lipo and "fat grafting" to even the girls out and try to increase size a bit.  I'm not quite up to that full C I had hoped for... but I'm only 5'2" so as things settle down, I'll decide if I want to ask for a little more down the road.  I have been on the B/C line since having kids as I gain & lose weight, which the new girls will still do. (I was always an A before kids!)  I know I will be doing a stage 2b because I am not happy with the position of my scar - kind of high.  My insurance has covered everything except for my deductibles for inpatient stays in the hospital.

nihahi

Morning Ladies!

Robin....hope to hear from you this week. Thinking of this weeks group of ladies too!

damiana.....follow your doc's guidelines. You sure don't want to push yourself to the point of pain, that is a definite no-no and a sign by your body that you've reached your limit. When I told my ps that I "couldn't" straighten up, he told me to use pain as the guideline. He said it was going to feel very, very tight, like I didn't have anymore stretch in the skin, (ya think!) but wanted me to very gradually "challenge" that feeling, and to stop if I felt actual pain. Took me a day or two to figure out the difference between those two sensations, but once I had confidence in my "awareness", I was able to sort myself out fairly quickly. Mind you, I still "felt" bent over on the inside, even though everyone kept telling me I was absolutely straight up. 

gini....just to clear up any confusion, my "wondering" about exercise/rads, was just related to arm movement, and possible "rad compromised" healing in that specific area. 3 MONTHS of just walking.....you're a stronger lady than me...I would have absolutely lost it, mentally!!!! I bet you're thrilled to now be allowed to "get back to it"! You can join kuka in the hard core workouts!!!!!!

kuka21174923

Damiana, that feeling on tummy goes away my ps told me after 3 weeks to try to stand straight to retrain the body how to walk straight. It took a couple of days, but I quickly started to walk normal.

Does anybody know how long it takes for the tummy scar to fade from pink to white?

Janet_M

Damiana - I've got the same tight belt feeling. Like one of those giant WWF belts that's way too small. It's actually getting worse rather than better, but my PS said that's part of the healing process.

To the 'Take To The Hospital' list - I would add a hairband. Myhair was bugging me, so I just pushed it all out of my face with an elasticized hairband.  The other things I loved having were lip balm, a packet of wipes, and a robe. By day 3 my IV was out and was able to wear a robe - which I did for my laps around the ward.

And for the 'Abolutely not Necessary' category - I also go a pedicure. I had to wear compression stockings for my hopital stay, and they had open toes, so I lay in bed in my morphine haze looking at my red toes, and it made me happy. 

Nihahi - You mentionned tapping. Is that just literally tapping the affected ares? I tried it last night in bed but I had no idea what I was doing. Felt good though!

nihahi

kuka.....different timeframe for EVERYONE. For some it is a matter of a couple months, for others more than a year. Patience, grasshopper!!!!! 

ps...how's the muscles today...keep that carrot out in front of you!!!!!

janet...yes....just plain tapping, gradually increasing the intensity. It's a proven desensitizing technique. But try to really focus on where you're tapping....if you can, literally, watch yourself doing it. You're also re-establishing the mind/body awareness. Kind of a biofeedback thing. It helps the nerves sort themselves out from the "over stimulated...holy crap....where am I, what's going on" scenario. Kind of like the reassuring pat's on the back when babies are crying, if that makes any sense.

Gini23

Ann - so sorry that woman at dinner could not reach out to you.  She must never have dealt with her feelings well.  Apparently no one told them to eat their elephant 1 bite at a time....  Hard to find the line between intrusive and stand-offish I guess.  I would be the one who might be more likely to be intrusive....  I agree with Liefie - it is my privilege to reach out and be there for the next woman.

My hospital list:  I DID get into my own PJs once I was in my room and out of ICU - nothing I cared about, but loose, cotton, button up the front.  And pinned drains inside.  I was in the hospital 5 nights post-DIEP, and only 2 for BMX, so PJs made a difference to me.  Totally agree with the hairband and lip balm!  I also had a couple of those pocket-camis - I wore one home with loose elastic pants.  I put on my robe and slippers for hallway walks.  I actually really liked the hospital paper-panties... very loose so not unfomfortable with incisions/drains, and I didn't care about anything leaking on them...

Remember the chargers if you are bringing devices!  Maybe an extension cord if you want them close at hand.

I had one of those "Jacki Jackets" - not needed at the hospital but I did wear it out a few times while still had the drains.  Of course, it was March....

I did not get a recliner - I went the wedge pillow route with lots of fluffy pillows propped around it.  I also used a back couch cushion to put under my legs, so I pretty much created a reclier in bed.  I also put a step stool next to the bed because mine is kind of high.

Mammalou - so happy you enjoyed the wedding!  Give yourself lots and lots of rest to make up for it.  

nihahi

sigh....not enough coffee yet, sorry for the multiple posts. 

re: tapping. Try to start in an area of "normal" sensation, moving towards the "abnormal" areas. Again, it's a biofeedback thing....bringing an awareness of normal gradually back to the problem spots. It's a great way to realize how things are changing too! 

ok....now I REALLY need to stop typing and get another coffee. Heading off for my first massage in a LONG time, hoping it will help the stupid shoulders to relax. Finally found a massage therapist with a chair, so I don't have to lie on my tummy/flap. (one of my ps's rules.....again....such a difference for us all)

ooohhhhh.....Janet......now you can be a FLAPPER TAPPER!!!!!!

bye bye!

sweetpickle

Janet- You made me smile with your story of being happy seeing your red painted toes. Sometimes its the little things in life that get us over a hump. :-)

liefie

When I read of all the exercise some of you are doing, I feel pretty frustrated. Almost 8 weeks out, and I was going back to the gym this week. Then on Saturday afternoon I managed to fall down some stairs outside going down to the lake where we live. Landed spreadeagled on my back in a patch of daisies - LOL. Twisted my ankle which is purple and swollen, and exercise is out the window. Ankle not really sore, so I think gentle yoga will be okay as most of the poses are done sitting or lying on the floor. I have gained 5 lbs since DIEP, and I just hate that. Tamoxifen is also not conducive to losing weight - what an epic struggle! It really gets me down. Also does not help that I love cooking and baking. And eating of course . . . Arrrrrgggghhhh!!!!!!!!!

sweetpickle

Liefie- OMG, glad you are ok!

Janet_M

Lifie - 'Arrrrgggggg' is an understatment. I'd be using much worse langauge than that if my long awaited excercise plan was sidetracked by a twisted ankle! Glad you're okay though. 

Anonymous

Mammalou-congrats on making that wedding! You've earned a few lay low days, though!



Liefie- goodness girl! Apparently everything is NOT coming up daisies! Take it easy on that ankle, please!



Damiana -thank you for the iron belt description....EXACTLY.



Kad- the longer I spend on this thread the more I see the 3-week (or so) blues. Went through it myself a few weeks ago. Drains don't help.....I had an everlasting one, too. It will come out. It is helping you in the long run....even though you are SICK OF IT!!!! Sick of all of it!!! Have a good cry, yell at your drain, get it all out. In a few days you will find yourself ready to get on with it, I bet.



Kuka- you go girl....you are my hero right now...can't wait to kick some cardio butt.



Ann - you can't control anybody else's actions, just your own. Take the high road. And you never know somebody else's story, ya know? I always try to tell myself that if somebody is behaving poorly maybe it's because they have something terrible happening in their private life that I am not aware of....maybe if I knew their story I would think their behavior wasn't so horrible. Then again, sometimes people are just horrible.......take the high road (talked myself right out of that, didn't I?)



Robin-hope you are doing well!



Welcome to all the new ladies!



Prayers and peace to this week's surgical class....we are with you!

Morningsun1

re: Damiana's iron belt- I am 23 weeks post DIEP today. Still have a "iron plate" on my tummy about 5-inches in diameter. The plate size is getting smaller.

liefie

Sweetpickle, Janet, Bailey, the weirdest thing about my fall among the daisies was that the moment I landed, my first thought was . . . who had seen me? Really? I could have broken my neck, and that is my first thought? LOL. What's wrong with me?

Tammy, that iron plate description is spot on. My plate is about 8 inches in diameter, almost like a big, round belt buckle sitting on my navel.

Have to run. Just remembered that I'm having a haircut at 11.15, my fourth since the end of chemo.

ssla01

Hi girls! Movie....I showed just about everyone who came to the hospital. I was so happy with the results. I'm not sure everyone was as excited about looking at my Frankenboobies! Lol



I have the sunburn feeling too, but just on one side. I will start moisturizing today. It doesn't really hurt, just annoying.



Janet, my toes were bright purple :-)

ssla01

I'm also getting sad. My surgical sabbatical from tamoxifen will be over Friday. I dread going back on it. I may as well " get over it " because it is for five years. Sigh....

Jeannie57

Liefie, I'm glad you didn't land on your gloob! There is nothing wrong with you. Our minds are full of crazy thoughts, especially since BC! Hope your ankle doesn't keep you down for long.



I was just reading the surgery/recovery info the hospital gave me. In the section about DVT or blood clots, they said not to use a cushion under your legs. Instead you should elevate your legs above your heart periodically. How do you do that with abdominal surgery?? And I can't imagine NOT having a cushion under my legs. Also, changing position every hour helps avoid clots.



Good warnings about the three-week post-surgery blues. I hope those of you struggling will come through it soon.



My PS's PA does the nipple tattooing. She's already showed me her vast drawer of colors. Who knew? My insurance covers everything as reconstructive surgery, which by law is required to be covered by insurance. Are your other insurances saying that nipples and tattoos are elective???



Movie maniac, loved your story! It scared me, too! At least I won't be having morphine. Janet, my turquoise toes will be peeking out at me.



I'm thinking of things like being swollen for months, having drains for a long time, wearing a wrestler's belt....I'll just have to see how it goes and chill between now and then. Off to Lopez Island in the San Juan's tomorrow for a couple of days. Probably offline. I'll have a lot of reading to catch up on here, I'm sure, when I get back!

mammalou

Gotta add the pedicure to the hospital list. It is so much better looking at pretty toes. How long were you all off coffee? I had a headache for all my stay at the hospital. I'm over that now.



My non diep skin above the flap is now very black and blue. I look like I have been beat up. Anyone else have this?

Gini23

Liefie - glad you are not more seriously hurt and the gloobs are ok!  I would be like you - more concerned about who saw the fall than how I was....  

Jealous of all the pretty toes in the hospital!  My hospital said no polish at all - any fingers or toes.  Small price to pay.  I planned a mani/pedi with my DDs for a few weeks post-DIEP when I could drive again - with a Groupon ready to go!  The color I chose at the time was "You only live twice" by OPI (the 007 line) - red and slightly sparkly.  Liked it so much I bought some and now 2 weeks post stage 2, I painted them again!

Jeannie - enjoy the island!  What fun!

Anonymous

Yes, Mammalou, looked like somebody punched me in the gloob. Still traces of it six weeks out.



I just talked to PS office about my areas of delayed healing and they are not concerned yet. Keep doing what I am doing. I asked about silvadene cream and they said nope. Add another check to the "widely varying protocol" column. I have another appointment on 7/23 and they said I could start therapy then. Having minor ROM issues and still swollen (but no longer hugely SWOLLEN) and concerned about my old truncal lymphedema issues a bit.



But I did get released to return to work next week, so YAY!

kad22

Thanks for positive thoughts and to know about the three week blues!



After my first surgery my bi-mx I woke up telling the recovery nurse I never got to say goodbye to my boobies, my sister is good friends with this nurse overwise would never have known I said this!



My toes were pink and I think every nurse complimented them!



DAMAIANA - one drain and it is producing aboy 40 every day! I guess I can be happy that I am not hunched over and never really was other than in the hospital.



Liefie- oh my goodness thank goodness you weren't seriously hurt. Hope your ankle feels better soon.



Robin hope you are doing well.