After surgery clothing

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kerryj
kerryj Member Posts: 8
Hi. My sister was just diagnosed with BC. She is having such a hard time, won't talk much to us (her four sisters), won't talk to survivors, feels isolated and terrified.

I think she is trying to focus on what she can envision and wants to ignore the big scary things. The other day she was wondering what to expect after surgery (mastectomy with reconstruction). Can she raise her arm, should she wear only button front things, can she wear her own pajamas in the hospital?

Can anyone tell me what they went through right after surgery? Are there any tips on what she can/should wear to be comfortable? We just don't know what to expect. Maybe if I can get her answers on smaller things we'll be able to move on to the big ones.

Thanks so much.
Kerry

Comments

  • mags
    mags Member Posts: 233
    edited March 2007
    Hi Kerry, I had lumpectomy and node removal.I just wore the hospital gown when I was in the hospital. I wore my boyfriend's pyjamas tops mostly when I got home. She will probably need help getting showered at the beginning and with washing her hair. I don't want to frighten you though as it wasn't so painful just uncomfortable and I got tired easily.
    Good luck for your sister.
    Hugs
    Mags
  • ramonajane
    ramonajane Member Posts: 54
    edited March 2007
    My partner had mastectomy, but no reconstruction. I'm not sure how having recon will make things different, but I can tell you what we did:

    She wore hospital gowns in the hospital. It just made things easier, and she could get a fresh one when whenever she wanted.

    She had drains for a week and a half post-op. Definitely button front things with the drains made it easier. Or a Softee camisole that the nurse in the hospital got for us. It has pockets inside for the drains, so they don't pull. Otherwise, we pinned the drains up so that they didn't pull or get pulled.

    For a shower, we have a "double-wide" stall shower, and I just used one of those hose/sprayer attachments to help her wash her body & hair while she stood there. We only had to do that once or twice before she could manage on her own.

    Good for you for focusing on the small things. That is very helpful.
  • kerryj
    kerryj Member Posts: 8
    edited March 2007
    Thanks so much for your responses. Just hearing something concrete helps. It's good to have an idea of what to expect. The more information I have, the better I'll be able to help my sister through this time.

    Thanks again,

    Kerry
  • PJB
    PJB Member Posts: 2,615
    edited March 2007
    I second the recommendation for the softee camisole. When I had my lumpectomy the first time around, I just pinned my drains to my shirt or tied them on a shoestring or something around my neck. The softee (the second time around, the mastectomy) made things easier and it's very easy to use.


    Good luck, we'll be here for support,

    Paula
  • Valerie_R
    Valerie_R Member Posts: 66
    edited March 2007
    I had 2 lumpectomies, which were no problem, then recentlhy a mastectomy and DIEP reconstruction. In hospital for 6 days and just wore their gowns.

    I am small and purchased a couple of pairs of sweatpants with drawstring waists in a size medium for after surgery. I just wore big oversized sweaters or big tshirts and pinned the drains to the inside of the pants and shirts/sweaters.

    To shower, I put a small towel around my neck and pinned my drains to it. I showered the day after surgery. I had no problem moving my arm immediately and had complete range of motion. The abdominal incision was a bit uncomfortable as it was very tight, but I did not need pain pills after day 3 in hospital.

    I was very swollen in the abdomen for a couple of weeks so those drawstring sweats came in really handy - my breast swelling went down much faster. After week 4 I could get into my dress slacks but it was uncomfortable after awhile. I wore jeans after week 6.

    I was up and walking the first day and back at Pilates at week 5 and doing everything I typically did by week 7-8. I was limited in the amount of weight I could lift and that was really the only restriction. I also slept on my bsck propped up with pillows under my knees for the first few weeks because of the abdominal incision, and it wasn't comfortable to lie on my breast.

    I thought the surgery would be a huge event and very painful. Trust me, chemo and radiation were much, much worse. The surgery was the best thing I did and the easiest thing I did throughout all of my treatment, and I'm delighted with the results.

    Good luck to your sister - she is lucky to have you!

    Valerie R

    P.S. I also wore soft camisoles under my big shirts after the 2nd week, and still am not wearing a bra, but I've just finished radiation. I went onto ebay before my surgery and just got a bunch of brand new, pretty soft camisoles - without the built in bra - for half the price I'd pay in the stores.
  • kerryj
    kerryj Member Posts: 8
    edited March 2007
    Thank you all for the tips on the Softee camis. I will order a couple for her today. And Valerie, thank you for telling me about your recovery schedule. My sister seems to feel as if she is going on a long trip from which she will never return, or as if she will return so changed as to be unrecognizable. It's good to have an idea of a timetable. I'm sure her doctor would tell her about what to expect afterwards (and maybe has already) but she is too depressed and frightened to hear. She is convinced she is going to die and I don't know how to help her.

    It really helps me to know what to expect in terms of recovery. I can drop this info into conversation casually, which seems to be the way she wants to hear things.

    Thank you all.

    Kerry
  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited March 2007
    Kerry,

    One other thing I did, was kind of weird but I'm glad I did it. I purchased some sweats and a few shirts (button up the front and loose fitting) and I wore those all through my recovery, chemo and rads. When my tx was over so were those clothes. You know how little things can remind you of something and I didn't want an outfit to remind me of the whole experience. Like I said it was sort of wierd but worked great for me!

    LuAnn
  • kerryj
    kerryj Member Posts: 8
    edited March 2007
    LuAnn,

    I think it makes perfect sense. Really, why keep things around that have bad associations? Thank you for telling me. I'm interested in anything that works for anyone.

    Now if only I could figure out a way to get her out of this deep depression. We have another two weeks to go before the surgery. It's just too much time to wait, too much time for her to sit and picture the worst. Oh well, reading the forums here helps me and maybe I'll be able to help her as a result. Thanks again.

    Kerry
  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited March 2007
    Does she like to read, Dr. Susan Love's Breast Book is an awesome book. Covers every type of cancer, what the treatments are and what to expect. It it a great wealth of information. You might get her that book. Also, if she isn't already on an anti depressant she might see her PCP to get one. This is a difficult time and they really help alot! It will get easier as she moves forward towards the healing process. If she ever wants someone to talk to on the phone I would be happy to send you my phone number. Sometimes it just helps talking to someone who has been through the same thing. I really hope all goes well for you both. You are a very caring sister for doing all this for her!

    LuAnn
  • linny
    linny Member Posts: 204
    edited March 2007
    Kerry, this is a really frightening time for your sister - I remember it so clearly (June 2005) - I had never felt such fear in my life. Once she actually starts the process, she may feel better, in the sense that you know you are doing something about it. It's very important that she get information about what to expect - it helped me to know certain things, especially about side effects of chemo.

    Definitely, button front only after surgery, and soft clothes. Luann, I totally relate to what you said - I threw out everything I wore during treatment, the associations were awful.

    Luann, discussion of Susan Love's book comes up here very often - I actually found it very frightening, and pretty pessimistic. I found other books that were less scary and still informative.

    Kerry, my sister to whom I am very close, helped me a lot through treatment - there's a lot that you will be able to do for your sister as well, she's going to need her family. Keep us posted.

    Linda
  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited March 2007
    Linda,

    What other books did you read? I am a knowledge hound and would love to find others sources of information.

    LuAnn
  • kerryj
    kerryj Member Posts: 8
    edited March 2007
    Linda and LuAnn, thank you so much. Actually, my sister does have Love's book and said it was too scary. Should I read it?

    LuAnn, your offer of a phone call is so sweet, but she won't talk to anyone. She knows a few women who have had breast cancer and she hasn't even told them of her diagnosis. She has four sisters, one of whom is a nurse, but she keeps us all at arm's length. I can occasionally get her to open up but then she retreats again.

    I wish she hadn't put the surgery off for so long--for mental and physical health reasons. It's torture for her to wait and wait.

    I had a tumor myself and ended up having a bone replaced in my finger. I remember the fear and isolation. I am jumping out of my skin waiting to go to her.

    I will mention antidepressants to her. I hadn't thought of that for her but of course it makes sense.

    Thank you, thank you. You are helping me too.
  • badboob67
    badboob67 Member Posts: 2,780
    edited March 2007
    Kerry,
    I am so sorry your sister is having such a difficult time. You are a wonderful sister to be doing what you can to support her! You have received some great advice here, but I wanted to add a few things.

    First, I was terrified of the surgery because I had never had any kind of surgery. My husband was able to stay with me all through the pre-op right up until they knocked me out. It helped a lot to have him there.

    Second, I didn't have recon, but I was pleasantly surprised by just how little pain I experienced. Perhaps it will help your sister to know that the pain I had was much less severe than the pain experienced when I had a tubal ligation with a belly-button incision.

    Most hospitals will have a nurse or support person that will visit your sister while she's in the hospital. Maybe you can meet with this person before-hand to let her know of your sister's state of mind.

    Your sister will likely come home with drains. In addition to the above suggestions, I found that I could tie the belt from my bathrobe around my waist and pin the drains to it when I showered. It was a bit awkward, but I managed it all on my own the day I came home from the hospital (the day after the mast)

    Your sister will likely have soreness in her arm and limited range of motion for a while. She should receive instruction about exercises to do while recouperating. I had 27 lymph nodes removed and experienced difficulty in twisting the caps on my medications. Also, because she will likely be on painkillers and a bit "out of it" when she first comes home, try to come up with a method to keep track of which meds she takes when. You want to keep enough pain killers in her at the right intervals to stay ahead of any pain she has.

    As for the trauma of losing one's breast, it is different for everyone. I did not have reconstruction. I did not want to look at the results of my surgery while in the hospital. It was just such a personal thing and I didn't want to be gawked at by nurses or "strangers" when I first took a look. My husband was very supportive and removed the bandages for me the day I came home. I had a few minutes of pretty intense emotional distress, but again it was not as bad as I expected. I was mourning the loss but also relieved because the cancer had been removed.

    As it turns out, my cancer had already spread to my bones. I have had great success without having to take tradition chemos. I am on hormone therapy with ARIMIDEX, ZOLADEX, AND ZOMETA. I am premenopausal at age 39, so the ZOLADEX puts me into chemical menopause so I can take the ARIMIDEX. My METS have been stable for a year now and I have every reason to expect them to stay that way for some time. Be assured that if your sister ends up having to deal with METS that there are plenty of very effective treatments out there and she CAN fight this!

    Another thing...I did not want to talk to anyone, either. I did talk to my husband, but I had no desire to talk to another BC sister. I can't really explain why, though. I did find it much easier to visit message boards and also exchanged emails with a friend of my brothers that was a few years out from her BC diagnosis. I think I felt less self-conscious and more free to share such sensitive feelings in a more anonymous atmosphere.

    I will keep your sister (and you!) in my prayers.
  • Fit999
    Fit999 Member Posts: 119
    edited March 2007
    My heart goes out to you and your family. Your sister is SO lucky to have you. The one thing I can add to all the other wisdom offered is books on tape. Im an avid reader, but couldn’t hold my books, especially at night. So my mom put a bunch of great books on her MP3 player (Amy Tan’s The Bonesetters Daughter is my fav) and I could relax and listen to that. Also, lots and lots of movies.

    I was lucky and my mastectomy and reconstruction surgery was out-patient, but those drains are hell. Make sure you stay (assuming her dr agrees) ahead of the pain curve for the first few days. Also, if she has long hair, suggest braiding it. I had mine in 2 braids for 1 week until I could take a shower. When I went out for Dr appts I just put on a baseball cap and a clean pair of zip up sweats and I was ready to go. Also, remember to have her take a pain med BEFORE any car rides and especially before they remove the drains.

    A few things to consider on the camis. 1 size larger (she maybe swollen) and without those cute spaghetti straps, they cut into my armpit where one of my incisions is, wide soft straps. And button front if you can find it.

    Best of luck, you guys will get through this. I know I felt so much better once I had a plan. And I also put off my mastectomy for a few weeks. But my friends were great and kept me busy w/dinners out and activities.
  • kerryj
    kerryj Member Posts: 8
    edited March 2007
    Hi guys,

    I'm concerned about the bathing aspect of this. Must she only have sponge baths until the drains come out? Is it possible to take a bath or a shower using a hand-held shower? My sister mentioned worrying about not being able to wash her hair. Is it possible to bend over or will she likely feel so low energy that these concerns won't really matter?

    Thanks for you help.

    Kerry
  • lightphoto
    lightphoto Member Posts: 65
    edited March 2007
    I am sure there are as many different ideas about this as there are BC patients. She will likely be able to shower normally after a few days. The concern is that the Steri-Strips need to stay in place for awhile. The drains and bottles were only an inconvience at most. My wife and I are fortunate to have a good friend who is a hairdresser. She offered to go in early or stay later in the evening to wash hair as needed in the shop.
    I have read that alot of ladies have challenges with the drainage bottles. For my wife, we got one of my xlarge t-shirts and sewed pockets around the bottom and to the inside. The pockets held the bottles, 4 of them, quite well. Much easier than using safety pins.
    Hope this helps.
  • csp
    csp Member Posts: 2,765
    edited March 2007
    Hi Kerry ,
    I'm Carrie too ! My sister was able to shower after a few days with drains the washing hair is difficult and she will need help with that. My sister is headed on 3 years
    June 13 of being NED . she was advised to just let the water run over the surgical site not to rub, the steri strips stayed put pretty good. Her mobilty will not be great at first with her arms and she won't be allowed to
    lift or drive for awhile. And she will be tired too.

    What I did was read everything I could about my sisters dx
    and scared the crap out of myself !! So although you and your sister should be informed I researched and used what I knew to help her and only told her what she wanted to know about everything from treatments to side effects. It was so
    helpful if a side effect came up and from reading the chemo boards I knew what the ladies did to help combat it. Also by the time she went to her onc I knew what the protocol for treatment was. Just remember that she is not a stat and everyone is different and most stats are outdated. There are new treatments even since my sister was dx'd and that is a good thing!! I found Dr. Susan loves
    book scary too . When your loved one is going through this some have trouble thinking too far ahead it is too overwhelming so it is a day at a time and sometimes lets get through right now !

    Hugs to you and your sister from me and my sister ~
    Carrie
  • kerryj
    kerryj Member Posts: 8
    edited March 2007
    Thank you Carrie, Scott and Theresa. This website is so helpful. Carrie, I have been doing as you suggested, trying to get information ahead of time so I am prepared. My sister still doesn't want to know one thing about what is going to happen and I don't think her husband researches either.

    I am just trying to get info as fast or slowly as I can handle it. My mission this week is to look at photos of implants and get more info on that. Her surgery is a week from Thursday, so I still have some time. Now I'm off to buy button front jammies!

    Thank you again for all your kindness.

    Kerry
  • Valerie_R
    Valerie_R Member Posts: 66
    edited March 2007
    Hi Kerry,

    If your sister would like to talk to me, have her send me a PM. I'd be happy to share my experience with her.

    Btw, you are a wonderful sister!

    Valerie R

    P.S. I took a shower the day after surgery. All you do is put a small towel around your neck and pin the drains to it. It was no big deal.
  • kerryj
    kerryj Member Posts: 8
    edited March 2007
    Valerie, thank you for your help and kind words and especially your offer to my sister. I know that she won't talk to anyone, but mayber after the surgery. I am hoping she will be more able to open up and look for help then. In any event, I know she will feel better about the possibility of a shower. She has been worried about that.

    Thanks again.
    Kerry

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