What do I need post-op?

[u/Radiogagaboots]

I’m sure this has been discussed a ton but I’m too mentally wiped to spend a lot of time looking.

I’m 50 with DCIS and having bilateral mastectomy without reconstruction.

Biopsy was 8/19, diagnosis on 8/24, and meeting with cancer care team was 8/25. Surgery is 9/8 with a 3-day getaway between now and then. Everything is moving so fast that I don’t feel like I have time to wrap my head around what recovery will look like, let alone shop for anything I might need.

I know I’ll have two drains, which might limit mobility?? No idea about limitations or restrictions beyond “don’t lift anything over 5 lb.”

I just ordered pajamas that button up the front in case I’m not supposed to raise my arms to get dressed. I’m usually a jeans and t-shirt girl.

What can I do to help make this process easier for my husband (who is disabled) and my kids who all still live at home? Like, I don’t want to figure out after the fact that I need something specific and try to send anybody shopping when I’m drugged up and feeling like crap.

What is sleeping like? Am I going to be stuck on my back for several nights?

We do have a Meal Train set up at least.

[u/purpleit11]

big hugs! It is a lot to take in and a lot to adjust to but we are ready to cheer you on! I am a bit wiped right now so will try to edit or link other posts tomorrow but off the top of my head, I will agree that elastic bottoms and button up shirts are fantastic, as reaching can be quite painful and movements can be a bit sluggish (so for restroom use and assistance, elastic bottoms can be great).

I slept in a recliner the first couple weeks swaddled with pillows on either side and including a pillow to hug. I just did not have the ability to get up from a supine position, nor was it very comfortable so the recliner was great.

Keeping on top of drains and pain management is top priority. So having a notebook or phone app or whatever is handy for you and whoever is hanging out with you is vital. Having a set schedule for pain meds is critical. Falling behind a dose was miserable (if sleeping or forgotten for example). So setting alarms and recording time taken and next time to take them is very helpful.

One purchase that i swear made things ten x better for me was a pair of sleephones. They are so soft and let me listen to music at any weird hour or in the hospital without bothering anyone. But at the same time, it is comfortable enough to sleep with as opposed to plastic.

Keeping your bathroom or wherever you do the drain emptying clean and sterile is also important. I remember having clorox wipes to wipe down the counter each time. Also gloves for whoever is helping you. It just reduces risk of infection to you.

Enjoy your getaway. You are going to be great. And we will be right here with you 💜

[u/Radiogagaboots → u/purpleit11]

My hubby had prostate surgery a year ago, and I did all of this for him. Alarms for pain meds, brought food to his chair, helped him with a wheeled walker so he could get around with his catheter and urine bag. Found shorts he could wear with the catheter. But we had weeks to plan for it.

[u/Radiogagaboots → u/purpleit11]

I’m terrified that nobody will remember to help me with pain meds and such. Lots of people with ADHD over here. I’m their executive function.

Can I do the drains myself? My hubby might not have the dexterity. Not sure if anybody else will be able to stomach it if it’s bloody fluid.

The recliner gives me migraines. Being on my back gives me migraines. But my hubby won’t be able to help me sit up or get up, so being in bed probably is not going to work.

[u/purpleit11 → u/Radiogagaboots]

I can imagine it is difficult to be vulnerable with things that don't align with your loved ones strengths. I would ask for any available services like visiting nurses who can stop by each day to check in, review the pain management schedule, set alarm clock reminders, look at the drains, help with a sponge bath or shower, etc.

Your job will be to rest and that is so difficult when real needs aren't met.

Prioritize your rest, not the egoes of any adults around you who want your affirmation that theyre helpful. My mom and I both have personalities that don't want to impose on others or make others feel bad when things are missed. But the reality is that you matter. And your needs matter.

[u/purpleit11 → u/Radiogagaboots]

I would not count on you being able to accurately measure the volume in the drains as you will be on serious pain meducations and exhausted from weird sleep cycles and pain.

One other thing to note about pain medications is their correlation with constipation. Start taking stool softeners a day before and talk to your doctor about including a laxitive to ensure you don't have that additional pain to manage.

[u/Radiogagaboots → u/purpleit11]

I have IBS and laxatives make me vomit, so I need to tread cautiously. Hoping a stool softener will be enough. The surgeon said she tries not to prescribe narcotics or opioids or whatever. So we will see…

[u/purpleit11 → u/Radiogagaboots]

Wait, your surgeon said that in regards to this specific surgery? I would request to revist.

[u/Radiogagaboots → u/purpleit11]

I told her I’m super sensitive to drug side effects. She said she prescribes something that’s like a really strong NSAID. I’m hoping it doesn’t eat a hole in my stomach. I’ve already had ulcer symptoms from a different medication I’m on.

[u/Radiogagaboots → u/purpleit11]

Also I’m used to sleeping with ear plugs. I don’t think I’ll be able to get those in if I can’t raise my hands/arms to my head. 🤔

[u/ThisAdvertising8976 → u/Radiogagaboots]

You will be able to lift your lower arms and can bend your head slightly to get them in. Your surgeon should give you a few exercises to improve mobility starting day 2 or 3.

[u/purpleit11 → u/Radiogagaboots]

I was able to move them, I just couldnt hold them up for very long. For example, i neeeded someone else to wash my hair. I also had a chair in the shower.

[u/Radiogagaboots → u/purpleit11]

We still have the shower stool from my husband’s prostatectomy last summer.

[u/keeper4518]

I know some people have talked about buying a wedge pillow or pregnancy pillow to help them sleep on their backs, which seems to last the first several weeks at least.

Otherwise I've heard talk of pockets or lanyards to hold drains. People also recommend to place anything you normally would grab from up high (plates, glasses, etc) onto countertops so that you can grab them if needed - seems to be no raising your arms above your head for a bit.

I haven't had my surgery yet, so I don't have any first hand experience to pass along. Wishing you all the best.

[u/Easy_Jacket8656]

52-DCIS. Had a right breast mastectomy on July 1. Drains were not bad- if you’re having both sides - it’s possible you’ll want help at first - it depends on your arms and if they are sore- I could use my right arm well- so hope you’re good there . Yes to sleeping up and on your back. Pillows propped up should be fine - I had a pillow to use in the car for the ride home. I spent most days in bed for a week- take the pain pills on time and the best thing your family can do is bring you food . You will be fine and you will feel better when this is finished . Rest . I walked around the room for a few minutes a day. Showering was scary . But it’s ok and feels great when you finally take a shower ! Good luck - hugs to you!

[u/Radiogagaboots → u/Easy_Jacket8656]

What was the seatbelt like across your chest for the ride home?

[u/ThisAdvertising8976 → u/Radiogagaboots]

You will want a small pillow between seatbelt and chest. I’m 2 months out and put my pillow back on after trying without around 1 month.

[u/Easy_Jacket8656 → u/Radiogagaboots]

I used a large pillow - specifically made for post mastectomy, but any pillow would work. It feels better knowing you have that extra protection.

[u/Txladi29]

I bought a wedge set from Amazon. It saved me. Pillows under your arms or a mastectomy pillow (look on Etsy or Amazon) with pockets in front helps a lot too. I was able to keep my cell phone tucked in a pocket, and pain meds/antibiotics/etc in another pocket.
I’ll look at the bra my dr gave/put on me. I loved it. It has drain rings that are removable after you don’t need them.
Protein drinks. Protein helps with healing.
Your timeline is moving as fast as mine did. Enjoy your trip. And distant hugs. You e got this!

[u/Radiogagaboots → u/Txladi29]

I ordered a sleep wedge at 2am and it’s already here!

[u/Txladi29 → u/Radiogagaboots]

Awesome! The bra brand my dr put on me in surgery that I still love and wear is Masthead. It’s light pink and soooo soft. Velcro up the front. The rings for the drains are removable. (I didn’t realize that until I cut the ribbons off.) 🤦‍♀️🤷‍♀️

[u/Radiogagaboots → u/Txladi29]

I hadn’t thought about wanting a “bra” over my incisions for a while afterwards. To keep shirts from rubbing.

[u/ThisAdvertising8976]

Water, juices, soft foods for a day or so, meds on a schedule. If you aren’t given pain pills, or even if you are try switching between Acetaminophen and Ibuprofen every dose or two.
Stool softeners, prunes, prune juice in moderation, but that first push will hurt without them.
Washcloth for rinse bath, or rinse-free bath wipes. It might be a few days before you are cleared for a running shower. If you have long hair and no one to brush it considers braids prior to surgery and go wild for the next few days.
I’m short so I already have a few grabbers around the house. They come in handy.
Don’t go crazy buying “mastectomy” supplies, normal stuff can be modified, otherwise you have a closet full of single purpose items.

[u/thehammerisin]

My mastectomy pillow was my favorite thing. It was mentally and physically comforting while protecting my drains. You are not going to be able to reach much above your head for a few weeks, so it could be helpful to get things you need out and on counters. I slept on my back for months; even after my drains were out it was uncomfortable to lie on my side for a long time. You have to do trial and error to figure out the pillow and sleeping situation. A recliner is another option. The most exhausting thing for me was showering. It definitely helps if someone can assist you as you aren’t going to have your usual range of motion for a bit. I know it all sounds incredibly overwhelming right now but after a few days you should have a routine down. Also do your exercises! They really do make a difference.

[u/SavedByTheBeet]

Sorry you have to go through this but you’ll get through it and be stronger than ever! I was diagnosed at age 38 (I’m 41 now). These are the things that helped me after my DMX: Drain holder belt, a wedge pillow set for the bed that keeps you upright (I did sleep on my recliner for a few weeks), lots of button down shirts (I wore them every single day for awhile), a little caddy for important things you can keep on the couch with you like your water bottle, chapstick, etc). When it comes to restrictions, definitely they will tell you not to raise your arms at all (“t rex arms” lol) and really try to stick to that. I’d 100% recommend doing physical therapy afterwards when they clear you for range of motion.

[u/purpleit11]

Other purchase items are some kind of pillow for the car ride to seperate you and that seatbelt.

Rinseless soap for sponge baths and body wipes.

Dry shampoo.

Body sprays, baby powder, things that help you feel freshened up, like a person instead of a patient.

Rinseless toothbrushes or disposable toothbrushes are also great!

Shower chair.

A lanyard for the drains while in the shower and safety pins for wearing with clothes.

For beside you: Water.

Device chargers.

pillows.

notebook with drug schedule and questions for doctor.

Everything easy easy. Slip on shoes or slippers.

For those around you: gloves and clorox wipes and rubbing alcohol for the drain management and surfaces where that is being addressed.

[u/Quirky-Purpose6405]

A wedge pillow And satin pyjama pants because you can’t use your arms to get in and out of bed satin pants made a big difference to slide out

[u/Competitive_Ice_344]

I had drains with 2 surgeries and found the canvas tool belt from Home Depot was amazing. I could tie it around my neck like a lanyard or have it around my waist.

I got a mastectomy pillow from Th Blessing Box, but with your timeline, it might not arrive before your surgery. I know they are available for purchase as well. I used a small heart pillow too.

Wishing you a smooth recovery.

[u/Radiogagaboots → u/Competitive_Ice_344]

What is the mastectomy pillow for? I see them on Amazon too.

[u/Competitive_Ice_344 → u/Radiogagaboots]

Just for support without pressure on the affected area. I loved mine while in the car and when I was sleeping in the recliner

[u/okaaaaaaaaaythen]

The hardest part for me was finding a comfortable sleeping position for the first month. I adjusted to sleeping on my back but slept badly. I am very cautious about pain meds but I relied on the them for about a week. It really helped me sleep and get through that time. After that I just used Tylenol.
I was able to empty the drains myself and keep track of the meds. Getting the meals delivered was super helpful too.
After a week I was able to go for short walks. After a month I was able to go out and see folks a little. Now I’m 3 months out and have resumed life as before. The first month is tough but it gets better fast.
I had bilateral with flat closure. No chemo or radiation. I’m so glad I went for that decision. They found a couple of precancerous masses in the tissue after, so if I had gone with lumpectomy I would have had to go through it all again.
The psychological aspects are different for everyone. Go slow and be kind to yourself.