Preparing for Surgery - what should I do?

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prettyinpink32
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Preparing for Surgery - what should I do? - Wednesday, June 03, 2009 8:46 AM
I'm having a bilateral Siea/Diep on July 1st.  What should I bring to the hospital?  What kinds of things should I do to prepare to go to the hospital?  What can I expect after surgery?  How will I feel the first few days, weeks, months?  My family will be rotating in and out of town to help me, how do I prepare them to help me?
 
I've read what the books say, but I'm curious about other people's experiences.
 
I'd appreciate any help you guys can give me.
 
 
33 Years old
dx 01/28/08
Triple Negative Cancer, Stage 3b/c
Chemo 2/13/08 - 11/24/08 (left mastectomy on 5/29/08)
12 rounds - Cytoxan/Taxotere/Adriomyacin/Taxol
33 rads
"For by grace are ye saved through faith; and that not of yourselves: it is the gift of god."  Ephesians 2:8

Deb Allen
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Re:Preparing for Surgery - what should I do? - Wednesday, June 03, 2009 10:45 AM
PrettyinPink, Just a few tips off the top of my head, and as I remember more, I'll post more.  I'm sure you will get lots of suggestions as more members see your post.

What to take to hospital:  (in no particular order, just the way my brain works)

chapstick
comfy houseshoes (I took my big kitty cat houseshoes)
robe that slips on easily and belts in the front
lotion
notebook (for jotting down questions as you think of them, to ask doc/nurses)

For the ride home

a couple of small pillows for positioning between you and seatbelt
a small throw blanket if you have a long drive

Things to ask about

drains, depending on how many you have, and make sure you are comfortable with how to take care of them;
pain control, don't be afraid to ask for more, you heal quicker when you are not in pain

At home
for the first few days, it was much easier for me to sleep in a big recliner, have someone put clean sheets over the recliner, use pillows on either side so you won't be moving around too much, and take control of the remote, telephone, etc.   Keep drinking lots of fluids. 

In the shower
get a shower stool or seat - I was able to take showers by sitting on the stool, and hubby had changed our shower head to one that can be held by hand,
be sure and check the water temp with your hand, and adjust the pressure so the flow is gentle.  You won't have much tactical sensation over most of your chest and abdomen for quite a while, and this way you don't risk having the water too hot and burn your skin.

I know this is not complete, but like I said, will continue to add more.

Oh yeah, I also took a binder type of notebook, and printed out posts like these, along with funny, helpful, or inspirational stories from Komenville to the hospital.  That was like a security blanket and a best friend at the same time.  Keep us posted, and ask anything.

Hugs!
Deb/aka Mimi
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





sassee
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Re:Preparing for Surgery - what should I do? - Wednesday, June 03, 2009 1:52 PM
When I went my only experience of hospital was having babies, so I learned by my mistakes. I had cute nighties and jamies that never left the suitcase. The clothes I chose to wear home were a joke. Boy was I crazy. LOl
 
Hospital Stay: I stayed in the hospital gown they gave me. A clean one evryday. They were the easiest to get on and off. I got a trams so hubby had to bring loose loose drawstring sweats for when I finally walked in hallway. Also the only other article of clothing were socks and slippers with grips....for the way home same type sweatpants but brought a zipper up sweatshirt for me to wear home. I couldn't get anything over my head and had 4 drains that were impossible to cover with the slinky t-shirts I brought.I think a loose blouse and yes i will say it elastic capris would work as well.  I packed my normal toiletries (yes, chapstick and lotion included)but bought spray on deodorant instead of stick.  I still use it today. One thing the hospital gave me that I loved was  a foamy soap in a pump bottle that does not have to be rinsed off completely.  I did not shower my entire week in hospital. Sponge baths and this soap for my hair.
I tried to bring books didnt look at them, but did bring notebook to right questions and answers. The first four days are a blur, I think I was alive.  I did have someone stay overnight with me, so they could call for pain meds in case I was sleeping. Do not let pain get ahead of you is my best advice? Morphine was not my friend so I had to get it from nurse.
Good luck and rest rest rest.  

GwynS
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Re:Preparing for Surgery - what should I do? - Wednesday, June 03, 2009 3:10 PM
When I had my double mastectomy, I was only in the hospital 2 nights.  It was my first experience in the hospital, except for having babies-which was a piece of cake for me. 
 
I learned that keeping ahead of the pain is extremely important and don't be afraid to ask for meds.  I had a pain pump, but I'm not sure what was in it.  It was not strong enough, but again, having had no experience with this kind of pain, when the nurse said, "On a scale of 1 to 10, with 10 being the highest, what is your pain level?"  I consistently said, "Oh about 4 or 5," when I was actually at about an 11 many times the first night, but didn't want to sound like a whiner!  Big mistake!  I'm sure they were confused because I was hitting the pain pump button as often as I could, but still hurting.  I just didn't know.
 
I packed a suitcase, but never opened it except to get my toothbrush.  When I got home, I had a large, triangular shaped, memory foam pillow that I used to sleep/recover in a reclining position.  My husband washed off one of our outdoor resin chairs and put it in the shower for me.  He also came up with the idea of a lanyard for holding my drains while I was in the shower.  It was one of those name tag holders that you see people wearing around their necks at conventions.  That made showering much easier.
 
Definitely wear blousy tops that open in the front for the most comfort and stretchy bottoms.  Be good to yourself and give yourself time to heal.  Don't try to be super woman! 
 
Best of luck to you and I will keep you in my prayers!

sharonma
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Re:Preparing for Surgery - what should I do? - Wednesday, June 03, 2009 3:20 PM
Pretty,
Check the post surgery tips above your thread.  Earplugs and an eyemask were the first things I thought of.  The hospital can be pretty noisy (and bright) and even though you will be checked  every 1/2-1 hour, you can get some rest in between the wake ups.  Take your cell phone to answer calls so you don't have to reach for the hospital phone, because everyone seems to move it to an inconvenient spot.  I found music relaxing and had my ipod.  I had alot of books and magazines but I could not concentrate on reading in the hosp.
I  have to be honest in saying the recovery is a b*tch for the first 2 weeks or so.  You cannot stand straight so you will have a fair amount of back pain.  This for me was worse than all the incisions.  Some people use a walker to ease the strain on the back.  But resting and a good back rub go along way (and remember it is temporary).  At home Have lots of pillows for support behind your head, under your arms, and knees.
If you pm me with your address I will send you little pouches for your drains  and a comfort pillow (great for cushioning the seat belt).
I don't know what your duties are at home (little ones, pets, ect) so having help with child care or dog walking and meals will be a big help.  Stock up on big, heavy and bulky items pre op so you won't have to worry about running out of TP or dog food.
Rest, Rest ,Rest and resist the urge to do too much when you get home
You will do great!
Sharon
dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

LaurieK
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Re:Preparing for Surgery - what should I do? - Wednesday, June 03, 2009 6:43 PM
Hi-
I had bilateral DIEP surgery in January 2008  (2 years post-mastectomies).  My mastectomies were pretty much a piece of cake so I figured the DIEP wouldn't be a whole lot worse.  Wrong!  The first few weeks are pretty rough.  I'd pretty much echo what the other women have already said as far as what to take to the hospital.  However, I'd emphasize a few things as being MOST important (to me anyway) for the first couple weeks - a shower stool, a walker, and pants with elastic bands!!  I spent four nights in the hospital (the first night in ICU and I really don't remember it) and on day 3 they had me take a shower.  It felt good to be clean but it was SO difficult so that was my first clue that I needed a shower stool and I used it for at least 2 weeks, possibly 3.  The walker also helped tremendously - I used that for the first week.  And elastic pants were my friend for probably a month.  Your abdomen is going to be swollen for awhile so don't be surprised that you might not fit into some (most) of your normal pants.  And even if you can fit in them, you will want to be more comfy.  Exactly 6 weeks from my surgery I was in Hawaii walking 3 miles every day and feeling pretty darn good  so if you can just get through those first few weeks, it will be smooth sailing after that.  Just keep telling yourself that it's all worth it.  And believe me, it is!!  I am thrilled with the results and I hope you will be, too.  Good luck!!
Laurie in Washington
Triple Negative, BRCA1+
Bi-lateral and chemo 2006
DIEP flap & nipple recon 2008

Deb Allen
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Re:Preparing for Surgery - what should I do? - Thursday, June 04, 2009 4:32 PM
Wanting to thank everyone for reminding me of vital things I forgot, and also wanting to 'bump' this back up to the top...

Deb/aka Mimi
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





sharonma
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Re:Preparing for Surgery - what should I do? - Friday, June 05, 2009 9:00 AM
A great resource and chock full of great information  The Breast Reconstruction Guidebook, by Kathy Steligo.  A must for anyone having reconstruction It is available on Amazon
dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

SandyK
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Re:Preparing for Surgery - what should I do? - Friday, June 05, 2009 10:37 AM
I agree that packing clothes for the hospital was a waste.  I wore hospital gowns only, putting on one that opened in the front over the other for complete coverage.   I never needed a robe that way.   I bought Hawaiian blouses at JC Penney to hide the drains after I returned home.   If you don't have help remembering your meds, a notepad next to your chair is a good idea, since your head might be a bit fuzzy.  It's very difficult to unscrew caps, so regular caps on your prescriptions help if you have to deal with them yourself.  I slept in my recliner for six weeks because I was most comfortable there.   Help with meals was probably what I appreciated most.  My sister fed me very well!
Dx 5/22/07 7mm IDC, stage 1
ER/PR+ Her2-/BRCA 1/2 -
BM/Stage I DIEP in Torrance, CA
PS refused to address complication, multiple issues
Beautiful results now thanks to Dr. DellaCroce in New Orleans


pshelton
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Re:Preparing for Surgery - what should I do? - Friday, June 05, 2009 2:41 PM
My experience was like Laurie's, the mastectomies were easy, the DIEP has kicked my butt.   10 days in the hospital and lots of pain, soreness and stiffness.  Couldn't shower by myself, couldn't do much of anything on my own.  Home now for 4 days and actually taking the showers by myself, can climb 7 steps very slowly and can fix soup or sandwich or cereal on my own now.  
As for not taking something cute to wear, I disagree.  I wore cute PJs after the mastectomy, slippers too.  After the DIEP I couldn't but I had two cute robes and my slippers, girly stuff and they helped lift my spirits.  I work at the hospital and would have been so much more down in the dumps in those gowns, but I see they on my patients all the time.  Just a suggestion...don't forget your chapstick and I took bath & body works lotion and spray...Paula
Paula, age 46, diagnosed at age 45, er/pr+, Her2-      
2/26/09 DX IDC multifocal, solid and cribriform type, 6 masses total, largest 2.0 cm
4/15/09 Bilateral skin sparring mastectomy with TE, 3 nodes removed, clear, Grade 1, Stage IIa
5/22/09 DIEP   5/26/09 Removal of failed left flap, TE replaced
7/2/09 Left Lat Flap with silicone implant
8/10/09-11/23/09 6 rounds chemo Cytoxan/Taxotere
3/5/10 More reconstruction
6/20/11 Final big reconstruction sur

prettyinpink32
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Re:Preparing for Surgery - what should I do? - Monday, June 08, 2009 4:02 PM
Thank you ladies so much for your input.  I've gone out and bought just about everything you guys have suggested.  The only thing I'm missing is the shower stool, but I'm working on it.
33 Years old
dx 01/28/08
Triple Negative Cancer, Stage 3b/c
Chemo 2/13/08 - 11/24/08 (left mastectomy on 5/29/08)
12 rounds - Cytoxan/Taxotere/Adriomyacin/Taxol
33 rads
"For by grace are ye saved through faith; and that not of yourselves: it is the gift of god."  Ephesians 2:8

Deb Allen
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Re:Preparing for Surgery - what should I do? - Monday, June 08, 2009 4:44 PM
Pretty, I may not be clear on the exact surgery as far as whether you are having a unilateral or prophylactic mast immediately followed by the DEIP/SIEA surgery, or just the DIEP.  If you are having the long haul, have your surgeon/s indicated approximately how long your surgery will take?  That is a big factor regarding your length of stay in hospital, and what you might expect.  Myself, I had the "whole nine yards" at once, bilateral mast w/immediate DIEP/SIEA surgery, and was on the table for almost eleven hours.  Fortunately, I had most of the above suggestions already dealt with, but my poor hubby refused to have anyone take care of him, so I set up a "Komen/friends" hotline, without his prior knowledge, to have certain friends and family call him at different times of the day to boost and check on him.  Turned out that helped a lot, he just was too stubborn to admit it!! Keep in touch, and remember to print some things with the suggestions!!

Hugs,
Deb/aka Mimi
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Poohcarter
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Re:Preparing for Surgery - what should I do? - Thursday, June 18, 2009 7:36 PM
I have not had my mastectomy yet but one thing I plan on doing, is the same thing I did when I had my hysterectomy. That is, I bought a glass bowl from the dollar store and decorated it. I filled the bowl with a variety of different candies. Then every time someone came in I would offer them a handful. I had frequent visitors and the nurses where so willing to help me. Then when I left, I gave the bowl and remaining candy to the nurse station. When I have visited other people in that hospital the bowl is still there and they take turns filling it. It was a little expense for me but it was a huge hit and I never had to call for a nurse. When my surgery gets closer I plan on doing the same thing because it was fun to make and I met so many people.

da808
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Re:Preparing for Surgery - what should I do? - Thursday, June 25, 2009 12:33 AM
I recently had a RB mastectomy, 6/12/09, and recently discovered I'll be going back for an auxiliary lymph node dissection on 6/29/09 due to a positive SNB.  I had a morphine pain pump and numbing medication drip, both controlled by buttons I administer.  I made the mistake of only utilizing my morphine pain pump when I couldn't stand the pain, which is wrong.  I could only dose myself every ten minutes, so there was no danger in pressing the button too often.  I should have played my button like a Nintendo game controller and will next time.  I totally agree with the earlier post, it's really important to manage your pain because it takes more medication to bring you back to a tolerable level.  After the first night, I was put on Oxycodone, but overslept the next morning beyond the four hour prescribed time frame for the next dose and woke in place I never want to be, again.  I'll be setting my cell phone alarm to wake me up to ask for meds, since the hospital didn't allow an overnight guest.  I was wrapped in gauze and an ace bandage, (being a plus size woman, it turned into a constricting rubber band), no ladies, I was not given a compression bra.  I'm prepared this time with a prescribed ABC post surgery compression bra.   I found the two drains to be the most uncomfortable. 

sassee
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Re:Preparing for Surgery - what should I do? - Thursday, June 25, 2009 12:18 PM
 I can't believe you hospital didnt allow for overnight guests. I've never heard of such a thing. My family would not leave me alone, secretly I needed them. I was only able to get out of my bed on my own the last two days. The last night I finally talked hubby into going home at midnight.  Hospitals around here are understaffed and without my family I would have been lost...I remember the food people coming in and putting my tray down but out of reach, or the phone was too far for me to answer, or washing me and changing my sheets (hubby even did that). I've never heard of such a thing
40 years old, mother of four teenagers (yikes)
 Awesome hubby of 19 years.
Dx 2/09 Double Masc with trams flap 3/04.
Estrogen and Pr+ Her -, Grade 2 Stage2
1/10 nodes micro positive
Chemo 4 rounds of TC
August 26 ooph and nipple reconstruction
Femara/Zometa
Dec 18 Gallbladder removal


Deb Allen
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Re:Preparing for Surgery - what should I do? - Wednesday, July 08, 2009 6:19 PM
BIG BUMP
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





sazbro
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Re:Preparing for Surgery - what should I do? - Wednesday, August 19, 2009 8:40 PM
Thank you ladies for the great input for preparing for surgery.  I started to purchase the items that were recommended.  
<message edited by sazbro on Wednesday, August 19, 2009 8:42 PM>

Deb Allen
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Re:Preparing for Surgery - what should I do? - Monday, August 24, 2009 9:31 PM
'nother "bump"
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





everydaysagift
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Re:Preparing for Surgery - what should I do? - Wednesday, December 09, 2009 10:56 PM
Hi, another bump,
 
My bilat mast. is December 18.....all input was most helpful & offered insight I wouldn't have otherwise been privy to (ie:compression bra), please add any new thoughts that come to mind......next stop..post surg. recommendations.......many thanks to all who posted........wishing you well, have a happy...Diane
09/08 Excis biop R breast - Dx LCIS
12/08 Hyster & Oopherectomy (endometrial hyperplasia)
06/09 Clear bilat. mammo & ultrasound
08/09 Bilat. breast MRI - "suspicious" area on L
10/09 L breast lumpectomy - Dx hi grade DCIS  
DVT hist R/O hormone therapy
Bilat. mast. w/expanders on Dec 18, 2009 
 Reconstruct date & type 2B determined

mgioffre
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Re:Preparing for Surgery - what should I do? - Wednesday, December 16, 2009 5:10 PM
My name is Maggi, i am 55 and i live in Pgh.  i had a bilateral mastectomy on 9-22-08.  The only thing I can tell you about being hospitalized is to have family and friends with you as much as possible to advocate for you.  I had bad reactions to the pain meds, breaking out in a rash and becoming very agitated.  If it was not for my husband pushing for someone to help me, I swear they would have just let me suffer, Advocacy is key.  If the call bell is not answered in time, yell or scream.  They will come pretty quick then.  I guess i thought I would be treated differently because of my diagnosis, but was not.  Never assume anything.   Give your surgeon and staff specific instructions about what you want and need prior to surgery.   Hope this helps.  Maggi

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