Mastectomy to come....any surgery preparation suggestions?

Hi Stacy-- I'm sorry you have to go through this, but this board is a great source of support. I didn't discover it until after my surgeries, and it would have really made a difference to me.

There are a lot of practical things you can do to ease your recovery.

1. You'll have drains on both sides, which are unwieldy-- Nordstroms carries a special cami with pockets to keep them in place and also hide them when you go out (to the dr's office).  I wore this with a loose zipped hoodie. You won't be able to lift your arms so clothes that are easy to put on and take off are essential.

2. I set up my bedroom in advance-- I put all the things I would need (clothes, pjs, toiletries, books, dvds) within easy reach. It was well over a month before I could reach the shelf in my closet). 

3.  Do the exercises the dr. recommends (but only when she says it's safe to do so) to prevent frozen shoulder. I had a SNB on the right side so I had much more stiffness there.  At about 3 weeks I was cleared to do physical therapy. The hospital I was at had a special PT for mastectomy patients. It helped so much-- she massaged the area to prevent scar tissue build-up, taught me exercises to regain range of motion; and measured my arm-- this is important so you can be aware of any changes (in case of lymphedema).

4. Have some help. If people offer, tell them exactly what you need--otherwise you'll just get flowers and cards, which is nice, but depending on your situation, some meals may be more helpful.  My husband was great about changing my drains and helping me shower. One of my sisters came to help with my daughter, who was 2 at the time, and pamper me. At first I said no to this, but in the end I didn't want her to leave!   I even hired a graduate student to come every two weeks to clean and do laundry until my arm recovered its strength.  It was an extravagance for me but worth it.

5. Take good notes and ask for copies of everything.  You will be very emotional and exhausted. My husband  came to every post-op appointment and took notes. Some people record their sessions. Ask all the questions you need to, especially have your Pathology report explained to you. Doctors tend to assume you understand the whole thing (or they don't care).  I later got second opinions about my path reports and post-op treatments, so it was important to keep all of the paperwork. And do get a second opinion if anything seems unclear to you, or just for peace of mind. Your insurance usually covers this.

6.  What type of reconstruction are you having? No one told me that the TEs would hurt (for some, not all)-- this lasted for over a month. The implant exchange was a relief and a piece of cake compared to the mastectomy.

7.  Use stool softener.  I had this advice from others and it really helped. The meds will constipate you and you do not want to strain when you have so many stitches and drains in your body.

8. Be kind to yourself.  The pain will be manageable (take those meds!). I had horrible visions of what I would look like, even though I had prepared by looking at lots of phostos of surgeries and reconstructions before and afters.  But when you first see your scars, it is difficult.  Just remember that in a few months, it will look much better. It will never feel the same-- you'll lose sensation, but cosmetically you'll be surprised, and in clothes no one will ever know the difference.

I'm sure others will have a lot of great advice to share.  Good luck.--Julie 

I brought my own toiletry products in a beautiful light weight Very Bradley bag (large). This is what I found helpful (I was in the hospital 4 nights)

Baby wipes

Neutrogena facial cleansing cloths (so I could wash my face without getting out of bed)

Nail file, yes I broke a nail and it would have driven me crazy.

Lip balm

Deodorant (spray!)

Extra soft socks with non skid bottoms (hated the hospital ones, they're huge)

Headbands

Dry shampoo- although the nurses had a "wet shampoo" that you didn't have to rinse out- much better

My iPad and my cell phone and charger

A few pairs of disposable contacts

Bring lollipops. I didn't, but thankfully one nurse had one and gave it to me. For several hours after surgery, they won't let you have anything except ice chips or a lollipop and my mouth was like sandpaper

one more thing did you do reconstruction ? if so what kind and are you happy with it ? I have read so many stories where so many hate them . sighhhhhhhhh to many decisions to many things to decide .

It hurts. Take your pain meds. I' thought I would get back to normal in a week. I'm still on pain meds, and I feel like I have a brick in my right breast. I only removed one. I can't imagine how your chest would feel with both gone. I never thought I would have to take a week off work, but there was no way I could have stood on my feet all day. I had no idea what a major ordeal a mastectomy was going to be. After a hour outing, you may feel exhausted, or spasms. So, plan on doing nothing for awhile. It takes time to recover.

Also, you might feel a loss for your natural breast. I did. It's ok if you do.

Yes, I had BMX with immediate TE reconstruction. Total surgery 7 hours. The BS started first, the PS joined in about an hour and a half later.... I woke up with a "Frederick's bra" on that they put on me during surgery. It has a full back, and eye hooks and a zipper up the front. Very little in the way of bandages. No stitches, my PS uses a type of glue. My surgery was 11/11/11 and my scars are virtually gone. My PS said I could stay as long as I wanted, he didn't want anyone rushing me.

I asked about saving the nipples. He did not recommend that for me. He did explain to me that years ago, they would save the nipples and implant them in the groin area until reconstruction...but they had many cases where the nipples were not free of cancer cells and caused issues in the groin area!

My hospital did provide toiletries, but it was comforting to me to have my own...like my favorite soap, hand wash, lotions, toothpaste, etc...

I had help when I got home. My mom stayed with us for three weeks, helping with the boys (3) getting to and from school, laundry, meals, answering the door constantly (friends with meals, flowers,) answering the phone. I definitely couldn't have done it with just my husband, although he was great too!

Stacy-

Tell your docs you want a pain pump. They put it in during surgery and it delivers measured amounts of some kind of numbing meds. It continues to work for 4 days and then it can just be pulled out (they tell you that you can do it yourself, but I had a nurse do it). Whatever the stuff is, it does not make you sleepy and can get you off the pain killers pretty quickly.

I was in the hospital one night. Surgery was in the late morning, and then I was sent home the next morning.

My friends organized two weeks of meals and for the first week, they had someone there from 11-5 every day, who also brought me lunch. It was great. Use disposable plates and silverware. It is lighter. For glasses, I used the double insulated ones because ice stays in it forever.

Drink a lot. Eat a lot of protein.

Get a wedge pillow. I bought a medical one for around $25. I think mine is 12 inches at the highest. It is a huge help, when you want to sleep in your bed, but you can't lay flat comfortably or use your arms to move. I also slept in a recliner for a week. Lots of people love it. It was ok for the first couple of nights, then I was over it. Ours was leather, so I covered it with a twin size mattress pad.

For the dreaded drains...a lady on here found a zip up Danskin jacket at Walmart that also had pockets on the inside. They were perfect. I bought three in great colors and wore black knit pants so I looked presentable. I bought them big also. Not sure if they still make them, but when I went through my closet, I found two other jackets that had the inside pockets.

Here is the rest of my random list.

Pre-Surgery

Get prescription for post surgery camisoles

Get pain med prescription so someone can fill it and have it there when you get home

Laxatives/stool softeners started before surgery and continued while on pain killers

Tell the anesthesiologist that you get easily nauseated so he will load you up on things to make sure you don't after general anesthetic

Hair washing tray-I also found a lady who came to my house and washed and put my hair in a style twice a week for two weeks. Some on the site go to Great Clips also. Having your hair washed makes you feel so good, and you just can't do it.

Lots of small pillows to put between your side and arms to eliminate any bumping. Use one between the seat belt and your chest when riding in the car also.

My best tip ...... if you like a private room, request a private room.   I am told if the doctor orders it, ins. will cover the expense.  If you request it, you'll be billed the diff. ($100 day in my case).

Avoid the following supplements for 2 weeks prior to surgery and begin taking 2 weeks after surgery:

• Garlic: 1200-2400 mg per day with food
• Fish oil: 4000 mg per day with food
• Vitamin E: 400-800iu per day with food
• Feverfew: 250 mg per day

• Don't shave any sooner than 2 days before surgery or it will increase your risk of infection.
  Make sure they have something written for nausea, most patients coming out of anesthesia have nausea

• Don't forget your pillow to sleep on, hospital pillows are the worst and take a small one to support your chest and keep the seatbelt off.

Most important!  Make sure your pain meds are scheduled and not as needed!  Stress that one with your surgeon and anesthesiologist.

• set up hair appointments to come to house

hand sanitizer is more comfortable than pumping soap and leaning over bathroom sink to wash hands

--slip-on shoes a must for a couple weeks

Cute slipper socks

In the Hospital

lighteweight robe, preferably one with simple wrap/belt at the waist

Likewise, comfy slippers. 
Lip balm.

phone charger

kindle

Ask for that last shot just prior to discharge.

5. Bodyshop body butter  My own face care stuff too.  I cleaned up everyday best I could until I was allowed to shower (showered on post of day 3).
6. Eye drops
7. Ipod

"Pee" as soon as you're able if you have the sentinel node biopsy to eliminate the dye

Post Surgery at home

Someone recommended plastic cups and straws for home.  Lighter and easier to lift than glass, and no cleanup. 

A shower stool
hand held shower head enabled me to bathe, with help, before the drains came out. 

One of those little neck roll pillows was great to nestle under implant (I just can't sleep on my back).

2. Books/ magazines / DVDs or you'll go nuts just sitting on the couch.

4. Setup a phone near the bed, chair you will sit in.   

6. If anyone asks what they can do for you say thank you & accept !!! 

7. I picked up thank you cards before surgery.  

Things to know.

If they do a sentinel node biopsy, be ready, they will likely not numb you and they prep you before the surgery with the dye, generally. Mine was not painful, just stung a little, but others on this board have had some real issues. I hadn't even thought about that before surgery. My doc said they don't like to numb it as the numbing stuff can interfere with the path of the dye.

Again...OnQ pain pump...insist on it and confirm it in advance.

Ask for the heated blankets whenever possible, or....if you are lucky....my surgery center had that new warm air blanket that just circulates round the clock. BEST THING EVER!!!!

Good luck....you will be fine

One thing I did for "anxiety support" was purchase Bella ruth naperstek's Preparing for surgery...a CD I listened to whenever I felt myself getting upset.

I did very poorly on the pain relievers, so I chose not to take them...and again, the CD helped me get through the rough places.

Have or ask for stool softners!!! No one believes how constipating anesthesia and pain meds are!!!!

I bought a few button down nightgowns and shirts for  my healing time...and I bought them a size or 2 larger.

Wishing you the best...oh, and join the mastectomy threads for Jan, it can really help to see and talk to other women going through the same thing.

I'm so sorry if this was already mentioned but I have to say it.....I was on morphine for the surgery and...without realizing what that does I would have liked a "heads up".

I had severe constipation after I got home. You might consider asking for stool softeners during your hospital stay. I cannot explain how miserable that was...

Great advice so far.

I would only add:  move everything in your house down to waste level or below for easy reach.  EVERYTHING.  Also, lighten everything you might want to get yourself.  Like buy quarts of milk instead of gallons.  Yes, a gallon of milk will be tough to lift for awhile.  Buy a supply of simple prepared foods you can heat and eat or unwrap and eat, at least 2 wks worth.  It is hard for some of us to let others wait on us hand and foot.  Being able to walk into the kitchen and grab yourself something is liberating.  Sounds silly, but true.

Clothes that slip on, NOT overhead.  Loose clothes.  Multiples.  I didn't beleive this. I bought two flannel type shirts/nightgowns for around the house, and I had a couple of soft velour lounge outfits that zipped up the front.  I then realized I had no real tops to wear with them.  I ended up wearing jeans or sweat pants with my husbands button up shirts.  Not pretty, for sure.

I bought a nice baseball/golf hat to wear between hair washings because, even when I was allowed to shower, it was just too much trouble, and hard to wash the hair with arms that don't go up that high.  If I had to go somewhere I'd throw on the hat.  I'm NOT a hat person, either. I hate baseball caps.  But, I wore one.  A lifesaver.  Showering with the drains is tough.  You need a hook or something to hang them on.  I had a shower hook and just slung them up over it.  I hated the fanny pack idea, just felt dirty to me. But, I felt tied down by the drains.

Good luck to you.

Oh, I didn't take much of anything to the hospital.  I stayed only one night, in the outpatient surgery suite.  I brushed my hair and teeth, was about all.  I mostly slept otherwise and didn't need anything.

Good luck with your surgery.  I had mine 8 weeks ago today.   I was so nervous anticipating it but you will get through one day at a time.   A very helpful suggestion I read on one of the board's here was to use a small stuffed animal under the seatbelt in the car.   That really helped when I was a passenger as well as I am still using it now as a driver.  That size of "cushioning" has felt easier for me to manuever with the seatbelt than a pillow.   Ditto to a lot of the other suggestions listed here.   My wedge pillow was invaluable - found mine at  bed bath and beyond and used a 20% off coupon that was floating around from the mail!!  I am very independent so asking for help wasn't easy.   People want to help and are just waiting for you to tell them what you need.   Lean on your friends and family.   Not the time to try and "do it all" yourself.

Everyone's suggestions have been good.  I only have one or two to add.  My husband bought me a recliner chair before surgery, which I slept in for almost a week.  (I had a BMX, no recon, and went home the day of the surgery .)

Here's my biggest suggestion: check out the most recent studies on SNB.  I had mine on April 22. The non-cancer side where they just removed the breast is almost completely back to normal.  I am still having some problems with the DCIS side, because they took out 7 nodes, and I now have a lifetime risk for lymphedema.  I have since read some studies suggesting that the removal of the nodes is not necessary.  I would explore that possibility with your doctor.  the only thing I regret is not discussing the possibility of not doing the SNB with my BS. 

Love being flat, btw, but that's a personal choice.

Alex 

Thanks I will speak to my BS about the node and I have a nice chair waiting for me.

I had my bilateral mastectomy with T/E on 12//22/11.  My surgery was 6 hours long.  I spent one night in the hospital and was discharged early the next morning.  I thought that was very quick - but the quicker you get up and moving - the better you will feel (even though it doesn't feel like that at the time).  I didn't take anything to the hospital because I was not there long enough to need anything.  Most important is to have your house ready - everything in easy reach.  My husband and my college age children were wonderful and did all the cooking and cleaning - but I was able to do most things for myself after about 1 week - as long as no reaching was involved. I still don't do any heaving cleaning (scrubbing, or lifiting - but I can vacuum, do laundry and dust).   I could shower (I wasn't suppose to shower with the drains - so they were just modified showers) -but I was able to wash my own hair.  My drains came out at 15 days and 18 days - what a relief.  Everyone recovers differently - just stay positive and know you can do it like so many of us have already done.

Stacyrose~~~Hope the surgery went well and you are home resting!  I am trying to make the choice myself between lumpectomy and mastectomy......DCIS 6cm nipple to chest wall.  Hard choice!

I had a single mastectomy, and didn't even stay in the hospital for one night.  If my surgeon had felt it was necessary I would have, but given a choice, I would much rather be someplace quiet!  I had very little pain, and did just fine on Lortab.  And, I opted to not have reconstructive surgery, and I am still (a year later) REALLY happy with that decision. 

And even though it's hard for some of us to accept help, think about it in the reverse - we would want our friends to accept OUR help, right?  

Huge healing purrs,

Jenn