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Double mastectomy and clothes? Advice?

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Hello sistas! The weather has been beautiful here and we've been having summer fun with our girls so I haven't been on here much. I am very happy to say that less than 2 weeks after applying I did get approved for Medicaid last Friday. Being self employed and with no health insurance can make things even more stressful, but I'm so glad we don't have that to worry about any more. I am, however, STILL waiting on a surgery date. Which comes to my question, I am having a double mastectomy with immediate reconstruction/expanders. How many nights did you stay in the hospital (anyone who's had the same surgery)? I have a couple of those wrap type bathing suit covers that just velcro across the front that I thought would be good for around the house, but what kind of shirts did you wear? I guess since I'll be at home I could just walk around in a robe if I wanted to and banish any visitors ;) I did get a nice tote "Necessities Bag" from a local cancer center, and that had a 3 pack of mens white ribbed undershirts in it, they said with the drains those types of shirts are good. And how long do the drains stay in? Once I start getting around better, do button up shirts work best, or pullover kind? Thanks in advance for your time ladies :)
Over the weekend I took my shorter haircut to a new level and got it cut really short. Like, she had to use the clippers on the back short! But she left my bangs in front long & shaggy, it looks really cute & punk rock. Last night I dyed my bangs pink, and put a pink streak in my daughter's hair. I figure if I'm going to lose it, then I'm going to have my fun with my hair while I can!
Goodnight!
Heather

Christine Louise
Posts: 429
Joined: Feb 2010

That is excellent news about your Medicaid, Heather. What a relief for you.

I was in the hospital one night after bi-lat with expanders. Button-front shirts worked best for me at first, because I couldn't raise my arms for pullovers. Gradually my range-of-motion got better and pullover tops are fine.

Came home from the hospital with a velcro-closure, tube-top compression garment on. I attached the drains to it with big safety pins and wore a roomy blouse over. Once drains were gone (1 week for one; 2 weeks for the other -- really varies for each woman), I've gone blissfully braless.

Yoga pants are super comfy and look okay with a blouse if visitors come by. "Patio" dresses/summer robes are good but I felt like a "patient" when people came over.

I love what you've done with your hair! Sounds adorable.

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

"Blissfully Braless"...love it! I can't WAIT for that part! There's such a variation in hospital stays, having to stay only 1 night would be great!

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

So glad about the medicaid! That has to be a huge relief!

Good luck to you with your surgery!

Love your hair! You look beautiful!

SamuraiMom's picture
SamuraiMom
Posts: 296
Joined: Jul 2009

Hi Heather,

Had a double with expanders on 9-9-09. I've got a lot of photos,advice and stories about it on my website if you'd like to take a look. You'll find it under the Member Resource Library. Just look for my picture. :)

I wore super soft, button front jammies and anything huge and button-front. I couldn't lift my arms for several weeks so avoiding pull over tops is helpful.

I was in the hospital for five days. I was only expecting to be in for two.

So be ready for anything. :)

I'm now on the tail end of things. Just got nipple reconstruction and they look great!

Having the tatoos in September!

I can tell you, it really, really sucked for many months but now I'm really starting to see the light at the end of the tunnel and things DEFINITELY get better!

Be patient with the process and recovery. I tried to be SuperWoman and think I'd do it faster, better, etc. and it was the opposite. So I was depressed because I'd set my recovery expectations WAY too high.

But I'm on the other side now and happiness gets brighter and brighter every day.

Good luck my sweet Invisi-Sister!

Love, love, love your pink highlights!!!!!!!!!!!!!!!!!!!!

xxoo,
SamuraiMom

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

SamuraiMom,
I did check out your website in the first days of my diagnosis. What a help to so many others like me! And an inspiration, I might add..I told my husband I want pictures of everything, although I don't think I would put up a website, I want to always have them, and maybe one day I could help out someone else.
I'm also trying not to get my expectations too high as far as my recovery goes.
Thank you for your encouragement and inspiration :)
Heather

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

Hi

i think as long as you take a zip/button top into hospital with you to come home in. I did manage to pull tops over my head still but it just took time and effort.

I put a list of post mastectomy exercises up on here somewhere a while back so i'll go find them and bump them up to the first page if i can.
I also put 3 of my expansions on youtube if you wanted to take a look and see what to expect.I'll also bump that thread up for you.

Yout hair looks great by the way! Very nice!

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Thank you, I'm so happy with my hair-it hasn't been this short ever!
I'll look for the exercise post and check out the youtube videos as well, thank you for sharing, I really appreciate it :)

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Glad you don't have to worry about insurance anymore!

Good luck with your surgery Heather!

Menda
Posts: 128
Joined: Jun 2010

Everything that I gave read on this thread is great advice. I am having a double with reconstructin, no expanders, on Thursday. The advice on clothes is the same I was given. As far as the hospital stay , I was told to plan on going home that same day while others are hospitalized as long as 5 days.,just talk to your doc.
I am getting my hair cut today. I may take your lead and follow. :)

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Aww I hope you get a nice cute, short haircut! I've been doing mine in stages, as my hair was really long to begin with. It has really helped me, though, and I think also my kids, to get used to the idea of losing my hair. My kids see I'm still mom no matter what my hair looks like. I was always growing my hair out, always. I was one of those people who never thought about having short hair, because I didn't think it would look nice on me. I never wanted to draw attention to my face, I guess because I had pretty bad skin when I was younger, and it utterly destroyed my self esteem, and still has an impact on me today. However, if I would have known how cute my hair would have turned out, and how much it improved my self esteem and lifted my spirits, I would have cut it a long time ago! I am finding it difficult to let go of the bangs, though..my next cut is going to be right before chemo, i'm getting a close-cropped little pixie cut. I think, for me at least, that it would be far more traumatizing for me to see huge clumps of my long hair falling out. I've been buying and collecting hats and bandanas like crazy. I never wore hats, either, I never thought they looked good on me but you know what, they do!
Hugs Menda :)
Heather

Jean 0609's picture
Jean 0609
Posts: 2322
Joined: Jun 2010

I had a single mastectomy and was in the hospital for one night. I found that zippered tops or button down tops worked the best. Plus they are easier for chemo too, since I have a port. You may want to put a small pillow in your car, for the ride home, after the mastectomy (cushion from the seatbelt). My drain was in for 10 long days. I slept in our recliner for those days, because I was afraid to roll. Good luck to you, you will be fine.

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Thanks Jean. I will be having a chemo port also, and I didn't even think about that! As far as the pillows, I was given a "Necessities Bag" for mastectomy patients from a local cancer center in my town. It included 2 small pillows, handmade by their volunteers, for just that, extra cushion for seatbelts & just trying to get comfy in general. I'm planning on camping out on our couch for the first few days, it has a recliner on the end, and my daughter has this giant, fluffy, overstuffed "L" shape pillow that I can prop up behind me to support me so I don't roll over. THAT will be a task for me, to just sleep, because I'm never as comfy as when I curl up into a little ball and sleep on my side...

Jean 0609's picture
Jean 0609
Posts: 2322
Joined: Jun 2010

Heather, Sounds like you are all set. Yes, I enjoyed going braless too! You have to find good in the bad. Love your hair cut by the way!

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Wishing you good luck with your surgery Heather! We are here for you!

ms.sunshine
Posts: 710
Joined: Mar 2010

Glad to hear medicaid was approved. I know that is a load off your mind.
I wore my husbands button up shirts. Easy to get on and off, comfy, and I just love wearing his shirts.
My doc said be prepared to stay up to 3 days, but I did so well I got to go home the next day. The drains came out 4 days later, but I did really well. So it really depends on how well you do.
Make sure you have one of those u-shaped pillows to support your neck when you prop yourself up to sleep. Sounds bad sittin up to sleep, but actually I slept good. It was more comfortable than it sounds.

Christine Louise
Posts: 429
Joined: Feb 2010

I just want to chime in again -- I strongly feel that staying one night in the hospital after surgery is a really good thing, if you are given any choice. Possibly your surgeons could order a stay.

You will be very groggy, maybe need support on the toilet, need education about your drains, may have issues with pain management and finding the best meds for pain, get another check by the plastic surgeon, etc. Even when I was given info the day AFTER surgery, I could hardly understand or remember it.

Cute, cute photo!!

lovs2decorate
Posts: 44
Joined: Jun 2010

Hi Heather!

I had bi-laterial mastectomy with tram flat reconstruction.

I used the bra from my plastic surg. After he gave me the "ok" to wear what ever bra I wanted, I used sports bras. My surgery was april 30th and I'm still in the sports bras. The biggest thing was trying to get into the #!@&*! thing. On a good day before the bc i struggled with it. Now I just step into it and pull it up. I'm not sure with expanders, but for me I needed the support of having the girls close to my body so there was no strain on the area while I was moving around.
I don't know if this is any help to you.
You'll be in my thoughts.

Justine

PS. Your hair looks very cute!!

Sally5
Posts: 86
Joined: Jun 2010

Sports bra. I agree. (Justine) My surgery was May 11 and I still prefer a sports bra. I found one with a zipper front... (Champion is the brand). There is no way I could have gotten it over my head.

Heatherbelle,
Due to the reconstruction, the sports bra feels more comfortable... but good news. I really don't need to wear a bra at all.
*** Thought you might like to hear some good news in this awful ordeal.

Take care.

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I had a lumpectomy, so, can't offer advice.

Just want to say how great your hair looks! I love the pink!

Hugs, Diane

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Good luck Heather! Love your hair! You look so pretty with short hair!

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

Heather your hair cut looks great! In preparation before my surgery I had my hairdresser cut my hair really short. So much easier to maintain. I'm glad the insurance issue got resolved too! I spent 2 nights in the hospital after bilateral mastectomy with no reconstruction. My surgeon put a compression bra on me that I'm still wearing for at least another week. My surgery was June 22. I'm still in a lot of discomfort - burning sensations, etc that I'm sure are nerve endings. When is your surgery?
Char

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Surgery is in 4 days, next Thursday. I'm actually getting my hair cut again before the surgery because it's already growing out a bit too much & looking a little rough in the back & sides! Did you have to wear the compression bra 24/7?That sounds NOT FUN!

survivorbc09
Posts: 4378
Joined: Jun 2009

Good luck Heather! Your hair looks great!!!!

Hugs, Jan

cavediver's picture
cavediver
Posts: 607
Joined: Apr 2010

Heather, as everyone I love your hair do! What fun! When I had my surgery, I already had lost my hair due to pre-surgery chemo treatments. So, I took a sleep cap for warmth. They did drop off a sport bra with holders for the drains...but I never used it. They pinned the drains to the hospital nightgown, which was fine and worked well. I was not very good the day after, blood pressure low, and very groggy from meds. There was no way I could have gone home. The surgeon just asked me end of day if I wanted to leave or stay, and I said stay. Even the next day I might have stayed again, but husband was pretty anxious to get me home. I actually was able to rest and sleep while in the hospital. First day I did need assistance to go to bathroom and wash. When I came home I had several extra pillows to prop up my side and arm, since I too am a 'side sleeper' by nature. The drains: one out in 10 days, the 2nd one was 2 weeks........and that is a great day when you are done with them. I still am uncomfortable trying to wear any kind of bra.........so go without. Good luck.... keep us posted.....you will do fine!

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