DIEP 2013

liefie

Greengirl, I totally agree about yoga. I started two years ago five months before my bc diagnosis, then went back to yoga as soon as active treatments were done. Can't wait to start up again next week after DIEP. Apart from the strength and flexibility that you gain, it is also very calming and relaxing. I love it. Nothing negative there! The stronger and fitter you are before surgery, the faster you recover. You will be just fine, I'm sure.

GreenGirl1

Lie - glad you are ready to get back to your asanas! How long did you wait to start up again? My PS told me I will need about 3 months! That will be the hardest thing for me to stop for a while. I will miss it! I hope I can get back sooner but we will see.

Anonymous

Greengirl- you will hear it again and again....ALL doctors are different in their pre and post DIEP protocols and each of us is a different person.



That being said, my PS had me on no raising heart rate no raising BP for 4 weeks post DIEP. Then she released me to do as I feel I can. So now I am finding the balance between pushing hard enough for gains.....but not so hard I cause a setback!

sbelizabeth

Hi, everyone.  I just got a call from RobinY.  She had something of a nightmare experience, I'm afraid.  Terrible nurses, lousy care, miserable pain control, the works.  Her DIEP surgery was on July 2--15 hours--and they took her back to the operating room on July 3 to try to save one of the flaps, without success.  She was happy with her PS  but the nursing care was wretched.

She's home now and managing on her own, although she's extremely swollen from too much IV fluid.  She just wants to get some distance from her experience. 

Please keep Robin in your prayers.  She'll probably do much better at home!

sweetpickle

Thanks for the update sbelizeabeth! I hate that she had such a hard time, please let her know we are thinking of her. I had a couple of crappy nurses too and it stinks to have to go through that.

Dyvgrl

That really sucks. Keeping Robin in my prayers!

MartyJ

Sharon - don't know when or where you are doing Stage 2, but Dr. M can arrange for a surgeon to remove the ovaries while you are under if need be.  Just might eliminate an extra procedure.  I know she has a person who can do that in both NOLA and Charleston.  Not sure about Chicago.

Wow, I took one day off from this thread and there are now 3 pages to read.  Y'all are having way too much fun.  Welcome to the new gals.  Best wishes for those doing Stage 1 and 2 this week.

Katy - love the new stories.  You have had an amazing life!  There are several women who have been sent to the chamber for wound healing issues.  It seems to make miracles happen.

Greengirl - you might want to check with your PS about where the drains are generally placed.  Some on this thread get drains placed in the pubic area and others (like me) had the drains placed at the ends of the abdominal scar.  That will help you figure out clothes to wear home.  Also, you should ask if you will wake up in compression.  Some doctors believe in compression from the get go and others don't.  You will find there is no "standard" of care.  I have heard that it is a much easier recovery from GAP than DIEP.  If you have any specific questions about gap, there are a number of ladies on the NOLA in September thread who have had that procedure.

mammalou

That is terrible. My thoughts are with her. This is hard enough when all goes well.

MartyJ

Katy - can you suggest that she ask her PS for some hydrochlorothiazide to get rid of the excess fluids.  It might help her be more comfortable.  6 days after surgery my doc gave me Lasix and Potassium since my ankles were so swollen and the fluid wasn't going anywhere fast.  Flap failure does happen and it is so awful when it does.  Robyn will be in my prayers!

Anonymous

Tell Robin we are with her. Sweet girl, living our fears out loud. Prayers for her. I know we all wish we were right there with her.

liefie

sbelizabeth, thanks for the update on Robin. What a rough ride - poor girl! Will keep her in my thoughts and prayers.

Greengirl, my PS told me no gym and nothing strenuous for the first 8 - 12 weeks. Only walking allowed. To me gentle yoga is not strenuous, and next week I will be 9 weeks out. So I'm going back. Will do only what I can, will not lie on the new boob (suppose to stay off it or 5 months), push on my DIEP arm or downward dog if I do not feel comfortable. There will be enough that I can do, and just being there will be so good fo me.

ssla01

Marty, thanks for the heads up. Stage 2 will be with Dr. M. I love any idea that eliminates a procedure!



Robin, you are in our prayers. Sending healing prayers your way.

GreenGirl1

I am new here and don't know Robin but Bailey you are right when you say she is living all of our fears. Wishing her a speedy recovery and so sad that she has been through such a terrible ordeal. My thoughts are with her.

GreenGirl1

Lie - good luck with your triumphant return to yoga. Please let us know how it goes. When in doubt child's pose!

goldie4040

That is awful SBelizabeth.   I wish there was something we could do.  I am glad you are actually speaking to her on the phone.  Please send all our love, and support to her.

Lmo45

Hi Ladies,

Ive missed you all !! Haven't been on this thread for a while, going thru chemotherapy right now and just finished my 3rd of 8 treatments, god help me!



Sbelizabeth, my heart breaks for Robin. Please let her know that we are praying for her!! Feel so badly!!

sherry35

Thoughts and prayers for Robyn! Wish there was more I could do.

Cherrie

Saying prayers for Robin. That really sucks that the nurses were wretched. That makes it worse. Sure am thinking of her as this is not what we expect.



Sharon- I was not able to have ovaries out in Chicago. Dr. M is working on getting someone but it hasn't happened yet. Now, I may need to do this another year. I think 4 surgeries in one year is enough already!! It goes along with stage 2 if you go to NOLA or Charleston.



Lmo45- sounds like you have been busy. (((Hugs)))

Janet_M

Robin - I wish I could absorb some of your pain.

sherry35

Gotcha- hope you are doing well!

Mary-good luck tomorrow, you will be in my thoughts!

kad22

So sorry to hear about Robin she is in my prayers fora speedy recovery.



So excited finally got last drain out today!



So my PS 's PA gave me a script for physical therapy! Has anyone else had this? I am super excited! She said everthing is going very well and my next appointment is in 6 weeks.



Welcome greengirl, you have joined a great group of ladies.

Anonymous

Good for you getting that drain out, Kad! Always a great feeling. My PS nurse said doc will refer me for pt at next appt. I think several of our ladies have had it, too. I am looking forward to it, too!

goldie4040

My doc is talking about PAP flap instead of diep. I   have been researching all night.  Nothing too negative. Faster recovery.  No muscles cut. Shape of thigh skin gives more natural projection of breast. Shorter surgery. Scar from donor site is hidden. Almost 100 percent success rate.  Hard to sit down on hard surfaces without pain for about six week. It's the new up, and coming surgery.  They are doing it more in NYC and at Nola.  My doc in Dallas is doing them.  Ugh. Decisions, decisions.  He will still lipo my tummy later for donor fat for fat grafting stage 2.  It all sounds too good. Something must be wrong with this.

liefie

Gotcha, hope you are doing okay. Those Doppler checks are bothersome, but necessary . . . best wishes!

Mary, in a few hours you will be on the other side too. All the best to you!

Kad22, you certainly deserve the drain medal! So glad the last one is gone  - enjoy the new freedom.

Goldie, PAP flap certainly sounds good, but in the end you are the one who decides. Ultimately we just have to trust our docs, and hope for the best. Good luck!

nihahi

Well Ladies.....I just cannot stop thinking about our Robin. I feel so very sorry for her, and I know that if prayers and thoughts have any power, all that we are sending to her will help her through this. Just so sad. Sbe.....she couldn't possibly have a better contact than you, to guide her back to where she feels able to accept and move on. Please let her know I am thinking of her.

Greengirl...welcome, hope we can be of help and support to you. I'm sorry if I missed your surgery date....please pm me if you want it added to our list. I've been gone all day, and still trying to catch up on the messages.

jlbloom....I'll ask the mods to change your date. Wonderful that you've been able to get it moved up so much. 

Just cannot sleep, Robin's flap loss and bad nursing experience are so overwhelming. 

GreenGirl1

That's kad for your welcome! I have already learned so much from you ladies and find so much comfort here with you. We are all in this together!



Nihahi - hi there! I do not yet have my surgery date. I am putting it off a few weeks because of a family vacation I have been planning for months! We live in NJ and are going out to San Francisco and plan to drive down the coast to LA. We are all excited for the trip. The surgery can wait another couple of weeks! I am having it done at New York Presbyterian in Manhattan and feel very relieved that I have found the team of doctors I will be working with. They have been wonderful so far. My husband had kidney cancer a few years back and had surgery at NYP. He had a great experience. And, since my first experience at Sloan Kettering was not as good as I would have hoped, I decided to go to NYP instead. As soon as I have the date, I will let you know. It will be sometime in august. Peace to you all.

Lmo45

Best wishes Mary, enjoy your nap. This will be over with before you know it. You're in my prayers and thoughts!!

Gini23

Big hugs and many prayers going out to Robin. Hoping today looks brighter and better for her.

LMO nice to see you back! Hope you are feeling better this week. Just read an article about Glutamine supplementing during chemo ....
http://marnieclark.com/the-special-role-of-glutamine-for-cancer-patients/

Thinking of Gotcha and Mary today - praying for amazing outcomes and awesome nurses for you both!

Have a fabulous day, flappers!

goldie4040

I guess nobody has heard from Robyn since SBElizabeth's phone call? The way EBe made it sound, Robyn was home alone, which made it all sound worse to me.  I hope she has some support around her.

Greengirl, I hope you have a great vacation.  Sounds like a great trip.

Janet_M

Bailey - I'm am so with you when you said 'I always recommend a vacation'. Last night I had a dream where I was swimming. Could be because my body is sore, or could be cus of the crazy rain here a few days ago. Anyway - I dreamt I was swimming down the highway (which did actually get flooded) and then I heard you ladies saying I had no ROM so I stopped and started floating. It felt so good! If all goes according to plan, I will be in the Pacific Ocean in a few weeks, and in the Atlantic Ocean in August. 

jbloom- Congratulations on the updated surgery for next week. Excellent! The waiting was the hardest part, so the sooner the better, I think. One of these fabulous women (I'm so sorry, my memory is shot) had only a days notice for her surgery and she pulled it off brilliantly. She also said she didn't have a lot of time to prepare, or clean her house, but everything turned out great.

I turned into a crazy neurtoic over-preparer, and I had a long wait time - so I managed to accumulate a whole lot of unnecssary stuff. Last week we returned it all - apart from my beloved wedge pillow, oversize button up linen shirts (GAP), and a drawer full of white cotton cammi's. 

Greengirl - Welcome. August will get here before you know it. Please don't be scared by Robin's experience. I think we're all heartsick on her behalf, and it is so unfair that she had to go through all that sh*t when she should be feeling safe and cared for - but most of us, thankfully, have had good experiences. 

I've never had a C- section (or kids) so I can't comment on comparable pain. But it is certainly manageable. I had a bilateral DIEP, and the drains were indeed the peskiest part of the recovery. But when you're in the hospital you'll be drowsy and the nurses will be taking care of your drains. By the time you're home, you will probably still have a few, and even though they'll be a nuisance, you'll know what to do.  I am four weeks post surgery and the drains are a fuzzy memory.  For the most part, this has been a very calm and happy month. 

You may find that when it comes to health care, you won't get the same answer twice. There is no standardized post-op care. Last week I was talking to one of my PS's Fellows who had just switched hospitals. She said that one hospital recommended 'binders/no bra/no flying for six week' and the other hospital was 'no compression garments/bra in three weeks/flying in three'.  And these hospitals were ONE BLOCK APART!

Two more tips before I officially start off on a caffeine infused ramble:

Planks & Deep Breathing - Planks pre-surgery for strength.  Deep breathing, for everything else.

Tube skirt- Slip-on stretchy tube skirt, (sans panties), made peeing and dressing a breeze.  

Janet