Please help me, I need info quickly

LT
LT Member Posts: 31
edited March 2014 in Breast Cancer #1
Hi again! This is not my first question, but I've been out of touch so long no one probably remembers me so I guess I'm a newbie again. My surgery date is finally here and the endless waiting is almost over - that's mostly a good thing.... I guess. I remember a posting about the top ten things to take with you to the hospital, but I can't find it! I'm having bi-lateral mastectomy with immediate DIEP reconstruction on Wed. I leave Tues. at noon, so any advice, help with finding that posting or new ideas would be great.I'll be in the hospital for 5 days. We live 70 miles from Wal-Mart, Target, etc. so any helpful ideas I need from the city for after surgery recuperation would be nice also. I bought several button down the front shirts and pj's in a larger size, men's white t-shirts cut open down the front (advice from my plastic surgeon's nurse) so far, but that's it. Thanks, LT

Comments

  • chenheart
    chenheart Member Posts: 5,159
    I remember you LT~ and of
    I remember you LT~ and of course I wish you well on your Big Day! I did not have your same surgery ( I was in and out so fast w/ the lumpectomy it's a wonder I didn't just put my boob on the "may I take your order" window and drive through!) It seems you have gotten good advice from the medical staff~ I will bump your post up so that it hopefully doesn't get lost in here and the Sisters in Pink will respond!

    Hugs,
    Chen♥
  • mlmjt1
    mlmjt1 Member Posts: 537
    Hi LT
    I remember your post too and the top 10 things to take but I dont remember who posted it...Anyway, I had bilateral mastectomy with reconstruction with expanders and I was in the hospital for less than 24 hours. I came home with 2 drains, but you sound like you will have the abdominal flap reconstruction. All I remember about that is that your range of motion isnt good after so anything over your head probably is not a good thing. Find out about what exercises to do and when to start them because you will need to exercise once they give you the go ahead to get your range of motion back again. I am almost 5 month out with 21 nodes removed from the right and my range is back but if I dont stretch that right arm out daily it gets tight.

    Also...you will need to ask them about a physical therapy or occupational therapy referral once you are healed well enough for further exercises for your range of motion. If any lymphnodes are removed you may need to do lymphedema massage which they need to teach you.

    Other than that, I would take a few good books. I wore a binder over my chest very tight for about 4 wks. I had alot of drainage from my drains and they couldnt remove them for 4 wks. That is not typical. The drains need to be pinned somewhere if you come out with them. I pinned mine to my binder. I wore sweat pants most of the time for comfort. I actually was driving 2 wks out but I had expanders in.

    Hang in there...Please post when you get home so we can help you...I will be watching for you...we have the same initials!!!

    Hugs
    LInda T
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    chenheart said:

    I remember you LT~ and of
    I remember you LT~ and of course I wish you well on your Big Day! I did not have your same surgery ( I was in and out so fast w/ the lumpectomy it's a wonder I didn't just put my boob on the "may I take your order" window and drive through!) It seems you have gotten good advice from the medical staff~ I will bump your post up so that it hopefully doesn't get lost in here and the Sisters in Pink will respond!

    Hugs,
    Chen♥

    This is why I shouldn't eat while reading this board...
    I practically choked to death on my breakfast, I'm laughing so hard...."put my boob on the 'may I take your order' window"??!!??

    Did you get fries with that, Claudia?

    Traci
  • JGrim
    JGrim Member Posts: 36
    I think there's a stickied
    I think there's a stickied thread at breastcancer.org in the surgery forum on what to plan/bring for breast-related surgeries... I can go double check after the caffeine sinks in. Another thing to remember is to move anything you'll absolutely need to below shoulder level in the house.
  • chenheart
    chenheart Member Posts: 5,159
    TraciInLA said:

    This is why I shouldn't eat while reading this board...
    I practically choked to death on my breakfast, I'm laughing so hard...."put my boob on the 'may I take your order' window"??!!??

    Did you get fries with that, Claudia?

    Traci

    Had I not been so nervous, I
    Had I not been so nervous, I would have asked for onion rings, Traci! :-)

    Somehow I was just picturing the milk from your cereal snorting out of your nose...sorry bout that!

    Hugs,
    Chen♥
  • Akiss4me
    Akiss4me Member Posts: 2,188
    Sorry LT
    I tried to find it for you (must be somewhere past page 50) but was unable to locate it. I'm sure you will get some good responses. Maybe who ever posted it originally will see this and repost for you. Or someone may have saved in their "favorites" list. Good luck and keep us posted. Pammy
  • jk1952
    jk1952 Member Posts: 613
    Akiss4me said:

    Sorry LT
    I tried to find it for you (must be somewhere past page 50) but was unable to locate it. I'm sure you will get some good responses. Maybe who ever posted it originally will see this and repost for you. Or someone may have saved in their "favorites" list. Good luck and keep us posted. Pammy

    I couldn't find it but..

    I know the thread that you mentioned, but I couldn't find it either. I had the same surgery that you are having (bilateral mastectomy and immediate DIEP reconstruction) in April, and I hope that you are as satisifed with the results as I have been. It really is a blessing to wake up and have breasts (although they look somewhat different) after the surgery. I think that it made the whole thing much easier for me.

    As far as the hospital is concerned, I'd take a toiletries bag with toothbrush, toothpaste, deodorant, tissues, etc. They'll probably give you everything that you need, but I'd rather use my own. Also, you are well supplied with tops, but you'll have to take loose fitting PJ's or sweats, since you won't be able to wear normal pants for a while. I took a bathrobe and did use that some. I love to read, but I couldn't really concentrate well enough in the hospital, so magazines were good, as was my iPod. Although some hospitals won't allow cellphones, mine not only allows them, they encourage that you use one. It's easy to carry and you won't have to try to reach for a phone. You won't want to reach for anything for a while. I didn't need any cash, but it's probably good to have a little. For a couple days, you'll probably be very happy to be in the hospital gown, so try not to overpack, since there is limited space in the room.

    Onto recovery. With this surgery, you'll probably have six drains initially, although some may come out before you go home. Drains are a pain, but they are critical to your recovery, so don't try to rush them. While you are dressed, they'll be pinned to some of your clothing, but showering is a different story. I used a 'lanyard' around my neck when I showered, and pinned the drains to it. It didn't get wet and weighted down like washcloths or towels do. You'll have a hard time stretching and getting in and out of bed. I found a recliner to be very helpful. With time, I recovered the range of motion and could return to normal activity, without any type of physical therapy.

    Unlike the reconstruction with expanders, you won't be able to bind your breasts, because you need to keep the blood flow unconstrained. I used camis and tank tops with a loose shelf bra for eight weeks before I was allowed to wear a bra again. You'll likely have an abdominal binder for a period of time. It really does make you feel better!

    Things I would have at hand: at least four extra pillows (you'll sleep on your back and you'll want them to support your arms, legs and extra support for head), Tylenol or Advil for when you come off the painkillers, baby aspirin (my doctor wanted me to take it for a few weeks after surgery), thermometer (if you don't have one, in case you're worried that you might have an infection), antibiotic cream and bandages (they could come in handy), and a cellphone nearby. My husband did email updates to friends and relatives, so he didn't have to take as many calls, and he could let people know when I was ready for calls or company. He also ran interference with phone calls and sometimes told the person that I was resting or had crashed after doing too much (whihc I did often).

    I wish you well with your surgery. I was curious where you lived when you said you were 70 miles from Walmart and Target, and saw in an earlier post that you're in West TX. We spent a week at Big Bend National Park last year, and had a flat tire. We went 100 miles to Alpine to get another tire. That experience helped to put things in perspective.

    Joyce
  • animallover2
    animallover2 Member Posts: 6
    Dear LT,What is DIEP
    Dear LT,

    What is DIEP reconstruction? I've had breast cancer twice. The first time in 1990 my R breast and i had a lumpectomy, chemo and radiation. The second time was in 1999 in my L breast. Since I carry the mutated BRACA 1 gene it was decided that I have a bilateral mastectomy. I insisted on reconstruction at the same time. I had the bilateral mastectomy and tramp flap reconstruction in June 1999. I never wanted this particular reconstruction, but that is what the doctors chose. I must say it was rough, very rough - like being hit by a MACK truck. I was on the operating table a little over twelve (12) hours. I had complications but I won't go into that now. All this was followed by a heavy dose of chemotherapy including Adriamycin which left me with congestive heart failure.

    The reason why I am back at the Cancer Center Forum is that I have another lump in the side where the cancer was almost 20 years ago and I now need another biopsy in my scar line. That is how I stumbled on your post.

    Like the other lady stated you will have to wear a binder for some time and once that comes off they recommend sport bras. Since my surgery was in the hot months I used these stretchy nylon bandeau tops. I don't know what the DIEP is, but if ou have your abdomen cut into you will be very sore. I had to sleep in one of those chairs where you press a button and you raise up and down. If you are a belly sleep beware. I also found it helpful to have one of those toliet booster seats so you don't have to sit that low.
    I also remember carrying around a pillow to protect my abdomen and chest area especially from my cats jumping on me.

    I don't know what the ten things to bring to the hospital are, but if your surgery is anything like mine was you won't feel like doing anything.
  • jk1952
    jk1952 Member Posts: 613

    Dear LT,What is DIEP
    Dear LT,

    What is DIEP reconstruction? I've had breast cancer twice. The first time in 1990 my R breast and i had a lumpectomy, chemo and radiation. The second time was in 1999 in my L breast. Since I carry the mutated BRACA 1 gene it was decided that I have a bilateral mastectomy. I insisted on reconstruction at the same time. I had the bilateral mastectomy and tramp flap reconstruction in June 1999. I never wanted this particular reconstruction, but that is what the doctors chose. I must say it was rough, very rough - like being hit by a MACK truck. I was on the operating table a little over twelve (12) hours. I had complications but I won't go into that now. All this was followed by a heavy dose of chemotherapy including Adriamycin which left me with congestive heart failure.

    The reason why I am back at the Cancer Center Forum is that I have another lump in the side where the cancer was almost 20 years ago and I now need another biopsy in my scar line. That is how I stumbled on your post.

    Like the other lady stated you will have to wear a binder for some time and once that comes off they recommend sport bras. Since my surgery was in the hot months I used these stretchy nylon bandeau tops. I don't know what the DIEP is, but if ou have your abdomen cut into you will be very sore. I had to sleep in one of those chairs where you press a button and you raise up and down. If you are a belly sleep beware. I also found it helpful to have one of those toliet booster seats so you don't have to sit that low.
    I also remember carrying around a pillow to protect my abdomen and chest area especially from my cats jumping on me.

    I don't know what the ten things to bring to the hospital are, but if your surgery is anything like mine was you won't feel like doing anything.

    DIEP is similar to TRAM flap
    DIEP is similar to TRAM flap but the tissue is disconnected and the blood supply is reconnected under the arm: there is no tunneling. There is no breast binder, since the new tissue is establishing a new blood supply. In fact, I didn't whear a bra for eight weeks after surgery. Your abdomen is sore, but the muscle is left intact, so there is better movement and you can sleep in a bed, and there is muscle to help you get up from bed or a chair.

    Joyce
  • New Flower
    New Flower Member Posts: 4,294
    jk1952 said:

    DIEP is similar to TRAM flap
    DIEP is similar to TRAM flap but the tissue is disconnected and the blood supply is reconnected under the arm: there is no tunneling. There is no breast binder, since the new tissue is establishing a new blood supply. In fact, I didn't whear a bra for eight weeks after surgery. Your abdomen is sore, but the muscle is left intact, so there is better movement and you can sleep in a bed, and there is muscle to help you get up from bed or a chair.

    Joyce

    I had DIEP/TRAMP
    Many good suggestions gave been already given.
    Couple additional ones.
    I am not sure about Aspirin, I think I was told not to take it. For pain, I took prescription painkillers. Loose, front open button blouses are needed. I also was told to wear a support bra and did after my drains were taken out.
    Food in refrigerator could be critical after you come home.
    Good Luck with the surgery
  • animallover2
    animallover2 Member Posts: 6
    jk1952 said:

    DIEP is similar to TRAM flap
    DIEP is similar to TRAM flap but the tissue is disconnected and the blood supply is reconnected under the arm: there is no tunneling. There is no breast binder, since the new tissue is establishing a new blood supply. In fact, I didn't whear a bra for eight weeks after surgery. Your abdomen is sore, but the muscle is left intact, so there is better movement and you can sleep in a bed, and there is muscle to help you get up from bed or a chair.

    Joyce

    DIEP
    SO THAT IS WHAT DIEP IS - WELL, WELL THEY WERE JUST COMING OUT WITH THIS TYPE OF SURGERY WHEN I HAD MY TUNNELED TRAM FLAP A LITTLE OVER TEN YEARS AGO.

    Before the surgery they told me I would never be able to do a situp again. I still do have a hard time getting up out of bed. I have a rail that I use to help when I need it.
    Since there is very little or NO muscle left in the tummy I have used my arms to hoist me off the floor and from the constant use of my arms they now hurt everyday. I think this is an aftermath of the Tunneled Tram Flap reconstruction and I wonder how many ladies out there have this problem too.

    I did not have a "breast binder" it was a belly binder.
  • karen0423
    karen0423 Member Posts: 67
    Hi- I am a 7 yr survivor of
    Hi- I am a 7 yr survivor of Stage III and had a mastectomy in 2002. I had the DIEP in Jan 2009 and am SO happy with it. I spent 5 days in the hospital, 1st day in the ICU, getting up is very hard, I won't sugar coat that. I had PT people showing me how to get in and out of bed, when I was home I slept in a chair for many days. You have to sleep on your back and that was way too hard for me so the chair was the best. I had a visting nurse for a week or so when I got home. I took take asprin I think 3x's a day, I was on pain meds too when I got home for a few days. One big thing for me....stool softener. You are in the hospital for so long on pain meds and the sooner you start on the softener the better. I vividly remember having to call the surgeon because I didn't start them soon enough. Clothes...you will just want something to hold the drains, I wore a bathrobe 24x7 until they were removed. Please just know that you will be very sore after the surgery, at the beginning you may think "why did I choose this", but you will be so happy after. I waited a long time before I had the reconstruction but am so happy I did and that DIEP was availbable for me! You are in for a long journey but for me it was well worth it, I hope that is the same for you. If you want to talk "off line" my e-mail is [email protected]. You didn't say when your surgery was but I wish you luck!
  • jk1952
    jk1952 Member Posts: 613
    karen0423 said:

    Hi- I am a 7 yr survivor of
    Hi- I am a 7 yr survivor of Stage III and had a mastectomy in 2002. I had the DIEP in Jan 2009 and am SO happy with it. I spent 5 days in the hospital, 1st day in the ICU, getting up is very hard, I won't sugar coat that. I had PT people showing me how to get in and out of bed, when I was home I slept in a chair for many days. You have to sleep on your back and that was way too hard for me so the chair was the best. I had a visting nurse for a week or so when I got home. I took take asprin I think 3x's a day, I was on pain meds too when I got home for a few days. One big thing for me....stool softener. You are in the hospital for so long on pain meds and the sooner you start on the softener the better. I vividly remember having to call the surgeon because I didn't start them soon enough. Clothes...you will just want something to hold the drains, I wore a bathrobe 24x7 until they were removed. Please just know that you will be very sore after the surgery, at the beginning you may think "why did I choose this", but you will be so happy after. I waited a long time before I had the reconstruction but am so happy I did and that DIEP was availbable for me! You are in for a long journey but for me it was well worth it, I hope that is the same for you. If you want to talk "off line" my e-mail is [email protected]. You didn't say when your surgery was but I wish you luck!

    I'm glad you mentioned the

    I'm glad you mentioned the stool softener. I was given stool softener in the hospital starting the day of surgery, and I stopped taking the pain medication two days after surgery. It was still very difficult the first time, so if they don't automatically give it to you, ask for it. Since the nurses were 'forcefeeding' it in my hopsital, I thought that it was done everywhere.

    Joyce
  • e_hope
    e_hope Member Posts: 370
    LT good luck with your
    LT good luck with your surgery... I didn't have that type of mastectomy.. I had the drive through type that in less than 24 hours your thrown out the door.. with no instructions on arm exercises or anything.. HELL I walked my self to the front door...

    I would recommend some mags if your into that stuff.. 5 days you might get tired of TV but pain meds might make it hard to focus on a good book.. and comfy clothes to come home in... I hear that is a painful operation and with the abdominal wound you don't want anything tight over the incision...

    BEST OF LUCK TO YOU..... :-)
  • marilyndbk
    marilyndbk Member Posts: 238 Member
    LT---Good Luck on your
    LT---Good Luck on your surgery.. all good ideas. I had bilateral mastectomy with Latissimus flap with expanders almost 4 wks ago. Everyone heals differently but I think most of us agree those first weeks are tough. My sister-in-law insisted on me having a shower chair. I thought it was a waste of money, but I did not have the strength to stand in the shower and it was nice to be able to sit in the shower and let that water pour over me. And more than once I found myself crying in the shower. My kids did not leave me alone for almost a week and sometimes it is so hard to put on that happy face. My son brought me a school notebook and wrote down times of everything from drains to meds. I wasn't heavy on pain meds but had trouble focusing and remembering so it was easier just to look at times and know when to take next med. I also found the small 100% juice boxes convenient. Just enough for one serving. Take care of yourself. Marilyn