A Compulsive Organizer Prep for Free Flap Surgery

Journey

Okay, I confess.  I am a compulsive organizer.  One of my earliest memories of my "problem" was during preparation for my first trip to summer camp.  I was ten years old. I remember the letter we received in the mail listing what to make sure I had to make it
though the summer away from home.  I was anxious enough about the long time away from home; now add to that the possibility that I would not have all the recommended things I would need with no way to get them after I was stuck there. I have no idea why I took this stance because my mother was a pretty responsible kind of mom.  Anyway, I'm sure I drove my poor mother crazy as I worked on that list over and over to make sure I had the correct number of shorts, tops, panties, towels, swimsuit, windbreaker, books, stationary and gosh knows what else a ten year old girl needed to survive three weeks away from home!  Fast forward through 40 more years of organizing myself, family, and my work. I was about to have a major surgery and not fully sure of what I was getting myself into.  When I was first diagnosed in 2008 I was fortunate to have found a great internet source in Breastcancer.org.  It was here that I found a very active discussion board with a bounty of information and support.  And when it was time for me to have my Hip Gap / Free Flap reconstruction I turned to this wonderful group of women and was given valuable bits of information to help me prepare and keep sane.

  I am not a medical professional - just a patient like you so above all else listen to your doctor! What follows are simply things I learned from others as well as self discoveries of which maybe a little will be of some use and comfort to you as you begin your journey.

Preparing Prior to Surgery

If you are not already active you should start walking now.  The better shape you are in prior to surgery the easier your recovery can be, and by "better shape" I am not
taking about your outward appearance.  Walking will help get the lungs, heart, and vascular systems going.  Your mind will be in a better place too.  If you are already spending hours at the gym...well, somebody's got to do it...good for you!  Don't forget to drink lots of water daily and take a look at what you are eating. 

What about housekeeping stuff? If cleaning the house falls on you then clean a couple of days before surgery.  Clean that grout that has been driving you nuts, mop the kitchen floor, and knock down those cobwebs off the light fixture in your bathroom.  I tell you this because only you will see these things when you are stuck at home recovering and you won't be able to do a darn thing about it!  
Now is the time to think about what you need to be able to reach in your
kitchen, pantry, bathroom, and closet when you are not allowed to lift above 5
lbs for six weeks and you are feeling rather tender.  Will someone do the shopping and cooking? If not then you might want to put some thought into preparing for that.  It doesn't take much to make one grocery bag over 5 lbs!  If your favorite easy dinner
is prepared in a slow cooker but it's stored on the top shelf and hubby's
already left for the day...well then it's gonna be PBJ sandwiches for dinner!

I have to say that there is nothing more comforting than coming home to a clean made up bed. Gather your pillows, and if your bed is not soft you may want to add a soft mattress topper now.  You will not want to roll on your side after surgery so making a nest of pillows is the best way to keep you on your back.  To begin with after surgery I liked having a pillow under my knees as well to keep me in place since I was a stomach sleeper
before. 

What to Take for
Stage One and the short stay:

Okay, we all know this is huge for me...right!  Turns out it is pretty simple stuff.
  A pair of washable slippers, (This is the kind you just scoot your foot into and can throw in
     the washer.  Did I mention I am also a germaphoebe?)

• Soft comfortable yoga
       style pull on pants that are kind of loose on you now (Best if wide leg
       style and not too slim to help conceal the compression garment.)
  
• oversized button down type shirts that will cover your rear and upper thigh area
  
• If warm weather maybe elastic waist skirts
  
• Colorful simple cotton undies, (I'll explain later)
• Comfortable low or no heal slip on shoes
• A jacket or sweater perhaps depending on the time of year.  
• And, of course your basic toiletries. But really even that you can pare
    down from what you think you may want. I'm a full makeup kind of gal and I ended up just throwing on face powder, a little blush, wisp of mascara and chapstick and called it done
       if we went out to eat while staying after my surgery. 

You won't be curling you hair or blowing out for your style.  If you really want to simplify
then maybe a cute fun easy to care for haircut before you go would be good?  If not then there are always cute hats to get you through those first few days.

Speaking of vanity...if you love pedicures then get one before
you leave.  Also, since you won't be bending down for a couple of weeks to shave your legs...well, enough said.

At the hotel ask for extra pillows.  I even sent my husband out to buy a cheap
twin sized foam mattress pad since our hotel bed was so hard.  For the trip back home a pillow or two for the car or a small pillow for the airplane will help you feel better.

First Aid and other
items:

It may be smart to ask if you should plan on bringing your own first aid supplies for when you are discharged.  Some hospitals will send you to your hotel with everything you need and others do not.  What I found very handy this last time around was those little round
flat cotton makeup pads and a bottle of rubbing alcohol to strip my drains.   I have
also used the small alcohol swabs that are in little foil packs.  You will need some iodine if your hospital is not providing to dress your drain areas. The real life saver for me was a good supply of 3 x 4 Non Stick first aid pads (found in the band-aid section). 
I used so many of those to protect my skin from the garment for the
first time around that I actually bought stock in Johnson & Johnson.  No, I am not kidding!

Another great helper was long super sanitary pads.  I would carefully place them over my H-Gap scars as I eased into my compression garment to add a little cushion there.
(Thank you Laura!)  Of course you are not going to expose the sticky side and just keep the soft side next to your skin.  

You may also want to pick up a couple or more of the jumbo sized safety pins.  They come in handy to pin up the JP drains by their little tabs on your compression garment when you no longer wish to wear the kangaroo pouch the hospital will provide.  It helped me to be able to widen my wardrobe possibilities! 

One more tip is a few men's cotton handkerchiefs.  I had a horrible time with the JP tubes rubbing my stomach skin sore so I would take a handkerchief fully opened and lay it between my skin and the compression.

Once I was on a roll with my showering I loved using Aveeno
Skin Relief Body Wash.  It is gentle on the tender skin and added a little bit of moisturizing which I found helped keep my skin in good shape being in the compression garments.

So what was it like
after surgery?

Amazingly simple.  You may feel like crud for a couple of days. 
Let the good nurses do their thing. 
If your doctor is one of the current handful of reconstruction surgeons
actively perfecting free flap microsurgery then you will be operated on and
recovering in a hospital with an educated staff that should be very capable of
helping you on your path to recovery.  Ask your surgeon prior to scheduling about the staff at the hospital you will be operated on.

For me hands down the worst thing were the JP drains. Not
everyone ends up with them but I was "lucky" and had for stages 1 and 2.  Ask to be educated on the need for them and it will help you get used to the idea.  It's
not fun but it is 100% necessary to good healing and we are all for that! 

During my stage one I was able to shower with the aid of a
nurse twice before I was released from the hospital.  This was invaluable for me because I was able to learn that I was not going to fall apart, and yes, I could wash my
hair.  The very, very best solution I found for showing with drains was a simple flat length of rubber like what they use to tie your arm off before drawing blood. 
You simply thread the loops of the drains in the band and tie it around
your waist.  Some ladies like to tie them around their necks like a necklace.  If
you are not given something before you leave the hospital ask for it!  If all else fails I have heard of using a long shoe lace.  Whatever works for you -
keep it around for stage 2 just in case you end up with drains again.

You will wake up in a compression garment.  It will have zippers along the length on both
sides and an open crotch for ease of visiting the bathroom.   You may also wake up in a soft bra.  In a day or so when you have showered you
will want to put on a clean set and add the colorful soft undies.  Why?...you ask.  Well, if you make the mistake of color matching your underwear to the color of your compression garment you will probably make the mistake of not pulling your undies down before sitting on the toilet.  Don't laugh ‘cause it has happened to many of us!  I found that if
I had something brightly colored going on down there I would remember.  Don't forget that you are on drugs for a few days!

Now what?

Okay, so you have had the surgery, and are now home.  Rest! 
Every day will get better.  Every day you will make a small improvement, but it may be so small and seemly insignificant that you won't see it immediately and may get depressed.  It does get better.  You will be stronger a day from now, 3 days from now, and then a week will go by and you will be amazed at your progress.  Follow your doctor's orders!  Eat good protein rich food.  Drink water.  Take your meds as advised. Walk slowly at first when they tell you it's
good.  Don't beat yourself up if you feel like you're 100 years old.  Tomorrow you
may feel 90!   And before you know it you will be dancing with life again.

I wish you the very best on your journey to feeling and looking whole again.

UPDATE to add other's suggested items:

Hair Dryer, chapstick, small pack of facial wipes, eye covers, ear plugs, loose cotton sun dress(if warm weather), lanyard for drains.

Journey

To all you vets who helped me prepare for my surgeries in NOLA and Charleston I say "Thank You!".  I wanted to post this before my memory became fuzzy and I forget too many details.  I am sure I have not thought of everything and actually only touched on a few things that really were important to me.  Please add your comments so those who are coming in behind us will have a good reference place to come to.

. 

Snobird

Bring a hair dryer so that someone can dry your hair after your shower. I can't stand wet hair in bed and since I traveled to NYC for surgery I didn't bring my hair dryer because most hotels have them now. Well the hospital didn't and I have long hair and was miserable after my shower. I couldn't get comfortable, I was freezing cold. I made my DH go out and buy a hairdryer so that he could dry my hair. It wasn't pretty but it was dry and I felt much better. Such a little thing but what a diference it made. If you are very particular about something make sure that you make your caregiver aware of it so they can help. It's the little things that you do for yourself all the time that you can't do immediately after surgery that are the most frustrating and depressing so make sure you can take care of them or have somebody do them for you to help with your recovery. It's not going to be the same for everybody but you know what they are.

SAMayoFL

Ladies, just a quick story . . .  on day 12 after my first chemo my hair started falling out in huge chunks so I shaved it so I didn't have to watch my beautiful hair fall out.  It had grown to about 1/2 inch when I finished my last chemo.  10 days later it all fell out - AGAIN.  I hope and pray when I go for my DIEP surgery that I have to worry about a blow dryer!!  LOL!!!

Journey, thank you so very much for your post.  I truly appreciate it.  I am going to see if I am able to print it out and will keep it as I prepare for surgery in August.

Susan

toomuch

Journey-What an amazing post. Thanks for consolidating this in one place and for the light hearted way you present how it feels post op. I'm saving this to my favorites and will take it out again in July as I plan for my August trip to NOLA!

Journey

Bump

AnneW

Bumping this up--a bunch of folks are having surgery this week!

alexanjb

Thanks for this info.  I am 2 wks away from my surgery date and it is helpful.

ladym13

I am just under 3 weeks away rom Uni delayed DIEP and SO happy to have read this...thank you Journey

Journey

Alexanjb & ladym13 - so glad you find it helpful!  Sorry for all the weird spaces but I wrote it in Word and copied here and that's what I got.  Not able to clean up and edit here.  Good luck with your surgeries!!

JustLaura

Thank you Journey. I'm two weeks out today from my DIEP in NOLA and am trying to get my house in order and my packing done. This is a HUGE help!

Journey

toomuch

Journey - Bumping this up for others it may help. I'm getting ready to travel to NOLA for my hip flaps and I'm so grateful to have your compulsive organizer  list. Many thanks!

Journey

Good luck Toomuch! You will be in wonderful hands in NOLA. Please feel free to add any suggestions of your own afterwards.

Momma2four

i will save this for when i end up having mine.  thank you so much!!!

Journey

Bump for Adey!



Hi Michelle, glad to help and good luck!

Adey

Now in favs, thanks J!

Del11

bump for upcoming NOLA gals

Adey

Ditto Jeskachi

Adey

once more

Downey30

WOW Journey,  That is an incredible amount of information and so appreciated.  I'm about a month out and a little on the compulsive side and this is is great help.  Thanks so much for spending the time and benefiting all of us on this journey.  Again, THANKS

Journey

Hi Downey30, glad you find it helpful. I've always found that preparation helps keep the anxiety down for me. Good luck on your surgery! 

glostagirl

Just read Journey's post again as I'm starting to pack, leave for NOLA a week from Monday!  

Things I would add are chapstick, eye covers & a small pack of facial wipes. 

PinkHeart

What a great list that adds a smile while reading. 

I would highly suggest adding ear plugs (I prefer the soft white sponge kind).

I've been in the hospital way too many times the past ten years.  The ear plugs really help me sleep and sometimes I can sleep through the endless vital checks, or just staff buzzing in and out of the room for something. 

Sometimes I'll let the nurses know that I'm putting in ear plugs so they don't think I'm rude and not answering them.

I second the suggestion to buy a twin size foam topper that is already zipped inside soft cover.  I actually did the same last year and send DH out for it when we go to Mayo Clinic.  Not only did it make the hotel bed more comfortable after surgery, but I could grasp the side of the thin foam mattress to help pull myself to get out of bed.  (It was on top of the fitted sheet.)  We drove for my past two surgeries so was able to pack and bring in car. 

pinksea

This is super accurate and will help so many preparing to go to nola. I just returned from my third trip. It was hot. I wish I would have packed a loose cotton sun dress. Also a lanyard works well for showering with drains.

catlyn1031

This is so incredibly helpful...thank you!  I am scheduled for mastectomy and DIEP flap on August 1 - this information will be invaluable.  I can't thank you enough~

Journey

Hi Ladies!  It's been a while since I've been back over here.  I am so happy that many of you are finding this helpful.  Some of you have added great suggestions which I have just added to the original post on the bottom.  Take care and happy healing!

mags20487

Thank you all...my date is set for Nov 1, 2012.  My head is racing at everything that must be done before the big day.  These tips are so helpful!

Maggie

Maxine58

This made me think of how scared I was of losing my hair during Chemo. I found a short layered wig with highlights (on the internet!) that looked really good on me, so a month before Chemo began, I had my stylist cut and color my own hair to match. When mine began falling out, I also shaved mine before it could get thin and noticeable. I wore the wig into work the next day and, seriously, no one noticed at all! My best friends knew but even my family physician, who saw me 2 months into Cheno said, 'well you're one of the lucky ones, keeping all that hair". It did alot for my self esteem during that time when my skin was erupting and all of the other side effects were occurring. At least my hair still looked like ME. A little preparation before diving in is always going to pay off!

ssla01

Bumping this list for those with upcoming surgeries. Thanks Journey!

eloqui

Thanks Journey! Found this super helpful for my upcoming surgery. Bumping this for others.