Preparing for Mastectomy with Reconstruction: What Worked for Me for the Hospital and Home

I've been planning this post since before I had surgery....knowing I wanted to wait until I was post-op to tell you what worked, what didn't, what items were the most helpful, etc.  Like some of you, I read a lot of "lists" and "tips" and tried to research as much as I could before going to the hospital for surgery.  As a single mom of a high school kiddo, I felt the need to be extra-prepared.
So here goes a long post....my opinion based on my experience with a Bilateral Mastectomy and immediate DIEP Flap Reconstruction....

FOOD
Even before I was diagnosed, I had already started using my grocery store's new Curbside Pick-up option....it is awesome!  This has really been great post-op too.  I order my groceries online, pay online, and schedule a pick-up time.  This is less expensive than a subscription delivery service and the store is just down the road. My parents picked up my order a couple of times and yesterday I did it myself!  (My first time driving since surgery was yesterday!)  You might try it before surgery just so you get a feel for it.

My appetite was hit or miss while in the hospital, but it slowly returned and getting good food into your system is important for healing. Popsicles were my favorite treat especially the first couple of weeks due to my mouth and throat still being a bit irritated from intubation.  I've been keeping a box in the freezer ever since. 

A great gift idea if you are looking for something nice to do for someone preparing for surgery is a stack of restaurant gift cards!  Some of my friends did this for me and even included some $1 bills for tip money.  They picked up cards from a variety of places, including sit-down restaurants for when I was feeling up to it and fast food for quick stuff; all located near my house.  These will come in handy for awhile!

A variety of food gift cards makes a great gift idea for post-op!

One thing I do fairly regularly is "freezer meal prep".  This comes in handy when life gets busy, which is often when you have a freshman athlete and work full-time!  If you have never done this, now is a great time to start!  Having something that I (or my son) can toss into the crockpot or stir-fry pan has been wonderful.  Eating restaurant take-out or fast food gets old (and expensive) and sometimes all you really want is a home-cooked meal. You won't be allowed or able to cook for awhile, so this can be a nice help.  About a month before surgery, I made my menu and spent an afternoon assembling some meals. Within three hours, I had 12 meals and an appetizer in the freezer!  Nothing is cooked ahead of time, just prepped.  If you need ideas on this, feel free to message me or check out my Pinterest Board dedicated to "Freezer Stuff".

12 meals & and appetizer ready for the freezer in 3 hours!

DRAIN MANAGEMENT

One thing I read a lot about was drain management.  Those stinkin' JP Drains become truly annoying after awhile.  Almost every blog post or list you read recommends some type of "drain holder".  My Great Aunt mailed me a "drain pocket" that she received as a gift before her mastectomy and one of the sweet ladies in the Sewing Circle and my parent's church made me a "drain apron".  The hospital provided lanyards and rubber bands as their solution.  There are pros and cons about all three and I used all three at different times. Here's my take on drain management:  

My 3 JP Drains hanging with
rubber bands on a lanyard.

In the hospital, the lanyard and rubber bands were easiest, especially while in bed.  Once I was getting up and around by myself, the lanyard, while convenient, pulled and tugged on the insertion sites.  It was especially awkward when I started going to the bathroom myself...the drains would "fall" when I bent over. I started placing them on top of my IV pump to prevent that big tug, but once my IV was out I didn't have that "shelf".  I found that shortening the lanyard helped with this while I was up and around. Once I was in bed for sleep, I lengthened it again.  The lanyard also worked best in the shower since you don't have to worry about it getting too heavy when wet.  The hospital gave me several when I left and I already had two in my post-op stash at home.  I kept a dry one in the bathroom to switch out after my showers.

She made this one with two large pockets since we
were not sure how many drains I would have.

The drain apron was nice when I went for walks in the hospital hallways and at home.  I couldn't comfortably wear it around my waist, so I tied it up higher (which looked funny, but felt good to me).  It was a nice change from the lanyard around my neck.  It felt too bulky though for sleeping in bed and I got so hot at night the extra layer wasn't comfortable.  I always went back to the lanyard at night.  

Not the best "in use" pic, but you can see the drain apron
is on my abdomen as I'm chillin' on the couch
right after I got home from the hospital!

The drain pocket is similar to the lanyard because it goes around the neck.  Again, this does get tiresome and you'll want a break, so having options is nice.  The pocket was especially nice toward the end of my drain days when they were not as full.  I could fit all three in the pocket at that point!  Just like the lanyard, I tied a knot in the string to make this one shorter when I was up and about.

In this pic, I have the drains still on the lanyard tucked
into the pocket. Shortening the length seemed to provide some
much needed relief to my neck.

I did a very short video the day I came home (POD #5) on stripping my drains, if you want a better look at how they worked:  

PILLOWS/SLEEPING
This is an adventure.  I am a side-sleeper so being propped-up and on my back is an adjustment.  Lots of folks recommend a recliner for sleeping.  I do not own one and am not a fan in regular life, so I did not borrow one for surgery.  That being said, I probably would if I had it to do over again.  Not necessarily for sleeping, but just to change up where and how I am sitting all the time.  My tailbone was getting sore the first week at home, so I recommend having some extra padding or foam cushions handy.  And, you can never have enough pillows!  

I purchased 2 wedge pillows at Walmart prior to surgery and wound-up asking my family to get me 2 more after I got home.  I have stacked these in different ways for both my back support, as well as my legs and feet.  I keep one on the couch  for watching tv and as I am slowly lowering my incline in bed (per MD orders), I can remove or adjust a wedge as needed.

Wedge pillows, regular pillows, and body pillows!

I have 2 body pillows that I use on either side of my body when in bed.  These help keep me from trying to roll-over in my sleep and give me cushioning for my arms.  

The Breast Center and my Plastic Surgeon's office each provided me with an underarm post-mastectomy pillow (both made and donated by volunteers).  There are different varieties of these.  They are nice, esp. in the beginning when you are a little more sore due to the drains.  Honestly though, I never used them. Instead, I used my special "weird" pillow that a lady at church made for me (blue one below). 

Mastectomy recovery pillows

I saw this mastectomy recovery pillow online and knew I wanted one!  My mother gave a friend the measurements and she made it for me before I went to the hospital.  This pillow has been used in all kinds of ways!  Several people at the hospital took photos of it and asked about my "weird" pillow.  It is soft and easily folds or bends. I have used it in the way it was intended (as pictured above) and I used it behind my neck in the hospital bed, behind my knees, under my feet, etc.  One of my nurses laughed every time she saw it someplace new!  I have included the measurements and my recommendations for tweaking it on my Helpful Links page.  This pillow has definitely been a great must-have!  This was the pillow I used for the car ride home too.

Another family friend bought me these sweet pillows that velcro around your seatbelt:

Velcro seatbelt pillows

These are nice and will hang out in my car for awhile.....just a little extra padding over the tender incisions.

CLOTHING

Pretty much my outfit until those drains came out!

You will most likely have a fun bra and binder from the hospital to live in for the first couple of weeks.  I was also told NOT to have anything that went over my head (unable to raise your arms).  In the hospital, I stayed in the gown until they took my catheter out. After that, I had some loose fitting knit shorts with a wide, soft waistband that I wore. A lightweight robe is nice if you are uncomfortable with visitors seeing you in your "armor".  As I mentioned before, my room had to be kept warm (for the microvascular connections on my skin flaps), so I was hot all the time in the hospital and since everything was covered, I didn't care who saw me in my surgical bra and binder!  I made the mistake of wearing satin pajama pants one night and was miserable.

My Plastic Surgeon's office had me purchase white cotton t-shirts and cut them straight up the front to make them like a jacket.  I was instructed to bring one to the hospital to put on after my first shower.  The shirt helped keep the bra and binder from rubbing on my incisions and if any of the drain sites leaked, it helped keep the bra and binder clean.  I wore this outfit until my drains came out and I was cleared to change into a regular bra and binder.

After my first shower in the hospital.

For doctor's appointments and stuff, I wore button-up blouses.  I have a couple of pairs of pull-on, stretchy capri pants that I have been using for these trips too.  You definitely want stretchy, soft fabrics and things that are comfortable on you.  I have been living in tank tops and knit shorts.

ENTERTAINMENT

Being at home and unable to really do much gets boring!  Try to line-up some entertainment for yourself ahead of time.  Now is a great time to binge on some Netflix shows you've been saving or go ahead and add a movie channel package to your cable if you can afford it temporarily.

A couple of friends gave me coloring books and pencils, books, and a big stack of magazines!  Of course, I have my iPad and I've been blogging to help pass the time too. Some folks prefer journaling, but I do encourage you to write stuff down as you go.

Cards, flowers, balloons, & gifts from friends and family

Friends from high school over
for a lunch visit!

I enjoyed having visitors to break-up the days.  Don't be afraid to tell people "no" if you aren't up to it, but for me, I was happy to have people visit even when in the hospital.  I looked forward to hearing about the "outside world".  :) Once you are up to it, see if you can schedule a lunch or a mani-pedi time with some friends.  I didn't do this until my third week, but it was good to get out.

FINANCES
Obviously, this is a BIG one!  If you are on this journey, be sure to make yourself very familiar with your insurance coverage and how much your out-of-pocket will be...then plan on extra just in case.  

For me, this is a tough one. I'm used to being pretty self-sufficient. Asking for help is hard for me....especially financial or physical help!  I've learned on this journey though, that you HAVE TO ACCEPT HELP!  You need it and people who care WANT to provide it.  

I am supposed to be out of work for 6 weeks. I already knew I did not have enough PTO to cover that long of an absence nor do I have short-term disability to help.  This means, that I will be short just over one whole paycheck (if I get to return at 6 weeks as planned). Thankfully, I have some money in savings  and I submitted my taxes prior to hospitalization so that I could get my tax refund sooner....every little bit helps.  

For those of you who have even bigger treatment expenses than I do, this can mean needing to think about fundraising, etc.  I did a small fundraiser...more for the moral support than the money, but the money sure came in handy!  I posted about it in a previous post...my t-shirt campaign via Bonfire.

More friends wearing #TeamJules tshirts!

Another thing I did was check all of my bank cards and credit cards for "rewards points".  I earn points for every dollar spent on my debit card and the credit card I used to pay my portion of surgery.  I was able to turn those points into $125 worth of gift cards prior to surgery.  Usually, I do this right before Christmas, but this seemed an appropriate time and has come in handy already.

HANDY MISC. ITEMS
Chapstick/Lip Moisturizer!!  This is a must-have especially that first week in the hospital.  Your lips and mouth are pretty dry after being in surgery for so long.  Both the Breast Center and my Plastic Surgeon's office gave me chapstick and I received some from a couple of friends as gifts.  My absolute favorite one was given to me by a friend...Tom's Peppermint! It is so smooth and the peppermint smells wonderful.  I wish I had taken this one to the hospital.

Be sure to follow your MD's orders and recommendations for things. Mine had me pick-up all of my prescriptions the week before surgery.  This was a good idea and I was glad not to have to wait for a prescription to be filled once I was home.  I also recommend having Benadryl on hand.  I had a delayed allergic reaction the week I got home and needed it.

My grandmother bought me one of those reacher-grabber things since bending isn't something you can do for awhile.  These are always handy around the house anyway....although I usually use my teenage son!  :)  Putting things within reach is really important though and it's not something you might think about. There are things I was surprised I could not reach...don't seem high or too low normally...but post-op my arms just couldn't go there.  For example: I had my son put a few of my drinks on the top shelf of the fridge every day because bending over to reach the bottom shelf was hard.

I tried using a shower chair, but it was not helpful for me.  I did much better just standing in the shower and using the removable head.  Although, I have kept a chair outside the tub to sit on while drying my legs and feet.

Stock up on regular use items and paper products...one thing you don't want to run out of is toilet paper when you are home alone and can't drive! 

I'm sure I'm forgetting all kinds of things, but this post is plenty long already.  :)

If you have questions or have other ideas to add, please leave a comment below!
I'm going to start working on a hospital packing list too. 

My drains are gone....I've been set FREE!

POD #10 was a lovely day.  Went to my first post-op office visit with my Plastic Surgeon's nurse at 0900 this morning.  It felt a little weird to be up and putting on "real" clothes over my bra and binder.  I fixed my hair and wore makeup even.  It was kind of nice to get out.

I used my new seat belt cushions that were given to me by a family friend. They worked quite well to provide a little cushion from the seatbelt rubbing or pressing on my chest or my abdominal incision.

These cushions velcro around the seat belts.

After calling me back into a room, I noticed that she had set-up the supplies for drain removal....I was so hoping for that!  Don't forget your drain records...she needs those to determine if the output is low enough to remove them.  For me, she was looking for less than 30ccs/day of output for 48 hrs.  I easily met that requirement on all 3 drains, but she told me that she is very conservative on removing the abdominal drain early because she has seen patients need it replaced again...ugh.  But, she would assess my abdomen for swelling and  if it looked good, it could go too.

My allergic reaction rash is still VERY present but nothing like what it was.  We discussed that a bit but agreed that the steroids appeared to be working. After a brief assessment, the nurse said that all looked well...breasts were soft, incisions healing well, and no abnormal swelling. And, ALL THREE drains could come out.  Yippee!

She told me to take a deep breath or to keep talking to her as she snipped the suture in my right breast holding the first drain in place and slowly pulled it out.  I felt the tug as she snipped the stitch, but I really did not feel anything as the drain slipped out. This was the same on the left breast.  The abdominal one I felt, but it was not painful.  It's a longer drain so I felt a little more of a tugging sensation as she pulled it out.  Once each drain was out, she placed antibiotic ointment on a gauze pad and taped it over the wound.

Covered drain site on my left abdomen

These stay on for 24 hours and then I am to use gauze until they scab over.  It was really no big deal and took a matter of minutes to remove all three drains.

Once we finished that, she brought in some instructions for me regarding the next couple of weeks.  We reviewed my current medications and which ones I will stop (like the baby aspirin regimen is only for two weeks). She also told me that Monday (my two week mark), I can change from wearing this post-op bra and binder to a store-bought bra and "panty girdle" (think Spanx).  They provided me with a list of brands and photos, most available at Walmart and Target.  I am actually really excited about that prospect...this current binder and bra are supportive but bulky.
At week 3, I can start some little range-of-motion exercises for my arms.  These are important to getting full ROM back and stretching the post-op tightness out.  And, I should also be scab-free around that time and can start massaging my incisions with cocoa butter cream.

In the meantime, things look good and I feel good.  I actually felt great without the drains. Just not having them hanging around my neck on that lanyard was so freeing!

Throwing away that drain lanyard
from around my neck!

After the visit, I stopped by my NICU unit to say hello to some of the folks working...it was nice to see everyone and get out for a bit.  Its a large unit, and I was tired after the walk.

Later this afternoon an old friend stopped by and we caught up and chatted for a long time.  She brought me a book and a stack of magazines to help me pass the next several weeks at home.  So sweet.

I also got to chat online with a friend of a friend who has also just started her breast cancer journey.  We chatted back and forth about my procedure and I tried to answer as many of her questions as I could. Sometimes it is really nice to connect with someone who has actually just been through it.

Ended the night with a movie in the living room with my boy and my mother.  All in all, a terrific...drain free...day!