• After care for my double mastectomy...

    Asked by Grandy on Saturday, March 2, 2013

    After care for my double mastectomy...

    I had someone say their arms were too weak to feed themselves or (pardon me) wipe themselves the first time. I do NOT want anyone doing that for me!

    I want to think ahead.. Like getting a plastic sits bath after having my children. Or buying a spray nozzle for the shower and some chair I can put in the shower. Any thoughts or ideas along these lines?

    Like I assume hub and I will sleep separately for awhile. And we have a recliner chair that could be helpful.

    31 Answers from the Community

    31 answers
    • nancyjac's Avatar
      nancyjac

      I didn't need help with any of those things after my bilateral mastectomy. My arms were just fine for feeding myself. I was told not to stretch overhead for a few days so if you need something from a top shelf you might need some one to get it for you. And I didn't need anybody to help me in the bathroom. The only problem I had showering was figuring out how to support the drains, but once I got that figured out, showering was no problem. Also, the only night I slept separately from my husband was the night I was in the hospital.

      over 4 years ago
    • Topazcat's Avatar
      Topazcat

      I had 16 weekly chemos and then a bilateral mastectomy. Also had 20 nodes removed under mu left arm. I had no trouble showering or wiping. Also had no trouble eating or dressing by myself. After the chemo and surgery I was tired, but did not stop me from caring for myself as I have always done. I slept in the same bed with my husband every night after surgery, except for the 3 nights in the hospital. It was so comforting to have him close. Everyone reacts differently to cancer but try not to let it turn you into a helpless person. Give yourself the chance to keep your life as normal as possible. Good luck to you!!

      over 4 years ago
    • gwendolyn's Avatar
      gwendolyn

      The problem is with reaching up, not down. Your surgeon will probably give you limitations about not lifting your elbows above your shoulders for a while. So, things like washing your hair and putting tops on over your head are difficult but not the things you mention.

      over 4 years ago
    • Grandy's Avatar
      Grandy

      Thank you! Thank you!!! I'm so encouraged! My other source must have had a really tough situation!!!
      I don't wish to be helpless, and that is why I am wanting info!!! I feared that this was stuff ya just never hear from anyone. So I am glad to have a place to ask! And I do love the answers!!! I love sleeping next to my hub! I'm a bit Verklempt!!!! (Teary eyed with hope! )

      over 4 years ago
    • Ydnar2xer's Avatar
      Ydnar2xer

      Before my bilateral mastectomy, I went to Goodwill and bought about 20 tank tops. I tried to get cotton, or mostly cotton. I started wearing these under my clothes shortly afterwards and found them to be most comfortable!

      I had insomnia much of the time during chemo, though, and often found myself downstairs in the recliner after a rough night tossing and turning. Good luck to you.

      over 4 years ago
    • Grandy's Avatar
      Grandy

      Ydnar2xer.. I so appreciate these helpful ideas. I do have some cotton undershirt/tanks.. Bras itched me a lot because I have Fibromyalgia! This is ONE perk for me!! No elastic, no itchy polyester or nylon whatever!!! Cotton tanks sound SO great!

      over 4 years ago
    • JennyMiller's Avatar
      JennyMiller

      The only problem I had was not being able to reach above my head -- so my dear husband washed my hair and would reach up to a shelf for me. Otherwise, I took care of my own needs. The drains were a nuisance - my son-in-law came up with an idea than worked great for me -- I had a velvet Crown Royal pouch that we put the 3 drains in -- then I put one of those ID things with the clip around my neck -- and clipped onto the bag -- it kept them together and in place especially at night. I slept with my husband with no problem -- I was a little guarded if he moved around but it was fine. I did not like sleeping on my back but it was not long before I could lay on my side again. Just keep a positive attitude and you will find the strength to be more independent than you imagined. Good Luck!

      over 4 years ago
    • HearMeRoar's Avatar
      HearMeRoar

      Grandy, you will do GRAND, I just know it!! I am 2 weeks and 1 day out. First two days were the worst. I tried to join my hubby in bed, it just is not comfy yet. I graduated from the chair to the couch. I was a belly sleeper before this I find it hard to sleep flat on my back. Biggest pain in the booty are the drains. I am excited to havethe bilat behind me! Wishing you love and peace. XOXO

      over 4 years ago
    • Lindy's Avatar
      Lindy

      There are innumerable non-mechanical bidet sprayers that attach to toilet seats available, Amazon has a slew of them. I bought one for a partially paralyzed friend for $100. I do not remember the brand but he said it was a blessing. Good to know as Chemo can certainly prove challenging in that area :-)

      over 4 years ago
    • DorothyV's Avatar
      DorothyV

      In the shower I had a lanyard that my nurse navigator gave me. It had a clip on it to clip the drains to. It worked perfectly. I used it again recently after my expander was exchanged for an implant and I had drains again. You can ask the hospital or Breast Cancer Society for a free one. Prayers for you:)

      over 4 years ago
    • jenniferk's Avatar
      jenniferk

      After my bilateral mastectomy I was really surprised how little pain was involved. I've also had a hysterectomy, broke my big toe and had to have 2 pins inserted, and knee surgery. The bilateral mastectomy was by far the least amount of pain. I could do everything for myself right after surgery. I never noticed any weakness in my arms. As someone else said the drains are challenging. In the hospintal they want to hook them to your pjs with safety pins. I found that scrubs like nurses wear worked great for the drains. I had 2 drains on each side. I got a couple of scrub tops that buttoned down the front and a couple of scrub pants that had large cargo type pockets. 1 drain bag could fit into each pocket. It was much easier than pinning them to my clothes. As far as the showering issues. I just used an old thin belt to hook the drains to when I showered. Since you can't reach your hands over your head washing your hair takes a little longer but you can still do it. I'm only 5 ft 2 inches so my biggest trouble was getting stuff out of freezer. Just have someone else get it out for you the night before. You will do great. Was much easier surgery than I was expecting. The recliner was the most comfortable place to sleep the first few days.

      over 4 years ago
    • DianaL's Avatar
      DianaL

      Every one of the answers below are right on. I have a suggestion for keeping your drains out of the way when you shower--a lanyard and some large safety pins. Works great! I also got a shower stool for our shower because that just seemed to take a lot out of me. A hand held shower head is great too! Good luck!

      over 4 years ago
    • thil2633's Avatar
      thil2633

      I didn't have any of the problems you mentioned above. I had a cheap bead necklace I would wear in the shower to safety pin the drains to. My husband got in the shower initially and washed my hair. Take advantage of that, if you are going to lose your hair! As far as sleeping, get long round pillows to put under your arms so you can sleep on your back. I felt like roadkill for about a week after my double mas, but I had incentive to get up and back to normal - my daughter was getting married 9 days after my mastectomy, so I had to get up and moving!!

      over 4 years ago
    • SusanK's Avatar
      SusanK

      I slept in the recliner for several weeks; it was easier getting up from a sitting position. My husband changed the shower head to a hand-held shower for me. Otherwise there were no major changes, except my husband had to do the vacuuming and any moving of furniture or heavy lifting for nearly six weeks. He also had to manage the cats' litter boxes. All of it meant a greater appreciation for what I have done for so many years :-) I do recommend front-button pj's and tops. My plastic surgeon sent me to physical therapist almost immediately; she started me on some simple exercises and within a month I was pretty good at getting my arms over my head, etc., without pain I had only four sessions with her but they were valuable. I like your positive attitude. That's the spirit!

      over 4 years ago
    • DYTYBR's Avatar
      DYTYBR

      Hi Grandy,
      I am 5 weeks out from my bilateral with reconstruction (stomach flap)! I didn't need any help either with any thing down low! Lol! You have gotten a lot of great responses already....I just wanted to add a couple if things: my insurance covered a visiting nurse to check my incisions, vitals etc and it was nice to have a knowledgeable person answer my questions and concerns. I received 4 visits...not sure if this is common. It was handled by my Plastic surgeon's office. Secondly, for managing the drains, one of my nurses suggested putting a lanyard around my neck and pinning the drains to it and I didn't have to worry about them at all. Best wishes! Sandy

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      I couldn't lift my arms too high after the double mastectomy, and was needed help with bathing for 3 days or so.

      But I was able to eat, lift a glass of water, bathroom hygiene. I didn't even need help getting out of bed and chairs, gave my stomach muscles a good workout (spirits were up with the pain meds, felt like superwoman, crazy!).

      over 4 years ago
    • lwell's Avatar
      lwell

      TLC magazine has a contraption that goes around your neck for putting drains in when showering. They also have clothing items with pockets that hold the drains which were nice also.

      over 4 years ago
    • Grandy's Avatar
      Grandy

      Thanks all of you! A well rounded set of experiences!!! I've been through all but one chemo, so I just have 1/2 inch, white sticky uppy hair!! So that's not going to be much of an issue. So glad I can recheck these, so I don't forget the suggestions!!!!

      over 4 years ago
    • karen1956's Avatar
      karen1956

      I didn't need help with daily living skills...bathin, toileting, eating etc....only thing was washing my hair, so I went to fantastic Sams for a shampoo...it was so luxurious and felt soooo good. I had a weight lifing retriction and limits on raising my arms over my head for the first week or so....I slept on my back with a couple pillows behind me....we had meals cooked for us for the first week post surgery then I was doing whatever I could that I always did...no driving for a week....by 2 weeks or so post bilat, I was feeling great!!!!

      over 4 years ago
    • coolannie's Avatar
      coolannie

      Grandy I had a mastectomy 11 yrs ago...the only thing that bothered me was that they took nodes out of the armpit so you need to exercise the affected side ....just like.. climb the wall with that arm....it will take time but your arm will return to normal....as you are having a double mastectomy do one arm ..rest for a period of time and do the other arm....the drains are a nuisance but you can shower with them...you can rent a bath chair at a pharmacy......The best of luck to you.....

      over 4 years ago
    • coolannie's Avatar
      coolannie

      My advice Grandy is don't change your life style...sleep in the same bed as your husband and of course exercise your arms till they are back to normal...you can live your life style with minor adjustments.....we all need to stay positve..Best of luck to You.

      over 4 years ago
    • Carolblue's Avatar
      Carolblue

      The best thing I did for myself after my double mast. was making myself a necktie. Well, it was one of those stretchie things that you can use for exercising to stretch etc. Looks like a large rubber band. I made it long and loose and attached the pins for the 4 drains I had. That way you don't have to worry about them being attached to your clothes to pull them down and hurt yourself. They are waterproof so they work great in the shower. I wore them to my Surgeon's office and they thought it was a grand idea. It was such a life saver and as I got rid of each drain it was pretty nice. That is the best advice I can give any woman. I would like to see more hospitals have other mast. patients talk with new ones while they are still in the hospital for questions or just support. Good Luck dearie.

      over 4 years ago
    • Grandy's Avatar
      Grandy

      I can't believe what a comfort it is to hear from you all! And all of you saying I'll be able to sleep next to hubby is such a peace giving thought. After 35yrs. it's still a wonderful thing!

      And Carolblue, I have some of those exercise, rubber band thingys!!!

      over 4 years ago
    • jamrck's Avatar
      jamrck

      Ask your doctor for a referral to a physical therapist specializing in breast cancer patients. I started do exercises the day after my bilateral mastectomy - not fun, but I never lost any range of motion. Button up shirts will be a lot easier for the first week or so rather than pullover shirts. GOOD LUCK

      over 4 years ago
    • carolchristao's Avatar
      carolchristao

      @Grandy I had a one side mastectomy & lymph nodes dissection, but it was on the right side. Before surgery, I "trained" my left arm for wiping. I put a plastic bench (sorry, I'm not sure if that's the word in english) in the shower so I could seat during bath, that helped me a lot. I also have those hand showers, so I took bath alone. My husband also let me alone in the bed.

      over 4 years ago
    • JulieS's Avatar
      JulieS

      My arms were fine after my mastectomy. I also did not need assistance with using the restroom. I did however, have to have my hubby wash my hair because my doctor would not let me take a shower until the drain tubs were removed.(This was quite enjoyable) If I had not had my hubby, then I still think I could have made do. I could have leaned over the tub or sink either one. The only night I spent in a seperate bed from my husband was the night I spent in the hospital. The pain was difficult the first 6-8 hours, but was definately manageable. I came home with a very low dose pain medication. By the third day I was mostly using ibuprophen as a pain medication supplement. I had difficulty sleeping flat and learned to sleep propped up on pillows. I just safety pinned my drain tubes to my hubby's big t-shirt. He slep with one hand on me all night (for two weeks) until I was finally able to sleep in a spoon position with him. While loosing a breast is very difficult, remain strong and positive. The reconstruction process is absolutely amazing. I was pleased with my end results. I am a 14 month survivor!!!!!!

      over 4 years ago
    • JulieS's Avatar
      JulieS

      My arms were fine after my mastectomy. I also did not need assistance with using the restroom. I did however, have to have my hubby wash my hair because my doctor would not let me take a shower until the drain tubs were removed.(This was quite enjoyable) If I had not had my hubby, then I still think I could have made do. I could have leaned over the tub or sink either one. The only night I spent in a seperate bed from my husband was the night I spent in the hospital. The pain was difficult the first 6-8 hours, but was definately manageable. I came home with a very low dose pain medication. By the third day I was mostly using ibuprophen as a pain medication supplement. I had difficulty sleeping flat and learned to sleep propped up on pillows. I just safety pinned my drain tubes to my hubby's big t-shirt. He slep with one hand on me all night (for two weeks) until I was finally able to sleep in a spoon position with him. While loosing a breast is very difficult, remain strong and positive. The reconstruction process is absolutely amazing. I was pleased with my end results. I am a 14 month survivor!!!!!!

      over 4 years ago
    • Grandy's Avatar
      Grandy

      Thank you Julie!!!

      over 4 years ago
    • lassie345's Avatar
      lassie345

      I planned ahead by getting tops that opened in the front and that had pockets for the drains. Jackets with inner pockets worked too. I bought some bathing wipes and dry shampoo ahead of time. I wasn't supposed to shower right after, but as soon as I could, I did it by myself. Like others mentioned, I used a lanyard for drains. The recliner was great except that I couldn't get in or out of it by myself. And wiping...I honestly didn't have much of a problem with this because I was soooo constipated. Blessing in disguise? Lastly, friends and family will really want to help in some way, but they don't know what they can do. So let them know. Be specific in your requests, and then be humble enough to accept help. God bless.

      over 4 years ago
    • Grandy's Avatar
      Grandy

      Thanks Lassie!!! Friday is the BIG day!!! I think I have everything you suggested! I've been studying hard!! And yes, God has blessed me a WHOLE lot!!!! HUGS!

      over 4 years ago
    • DaveWaz's Avatar
      DaveWaz

      Grandy,
      Thank you for your question. I hope all is well!

      Your question reminded me of some experience content we have on the site. One of the pages is about experience with a double mastectomy:

      http://www.whatnext.com/experiences/procedure/double-mastectomy

      One more thing, is I wanted to let other WhatNexters know about our Beginner's Guide to Cancer, which includes a guide on how women chose between a lumpectomy and mastectomy.

      https://www.whatnext.com/cc/how_we_chose_between_a_lumpectomy_and_mastectomy

      Best of luck to all,
      David

      about 4 years ago

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