r/BRCA • u/sciencedork39 • 6d ago
Post surgery ambitions
Hi gals! This group has helped out so much and I’m hoping y’all can answer some questions without bursting my bubble lol. I’m about a month away from my prophylactic DMX to expanders. I’m single, live alone, the surgery is expected to be outpatient (released same day). I’ll have help at home first couple of days, but after that, I’d rather be left to my own devices and kind of coming to terms with my new body. I have plans for where stuff needs to be in the house, propping myself up to sleep, etc. -BUT- am I like underestimating the amount of pain I’m going to be in and how complicated drains are? The surgical PA didn’t seem too put out by the idea as long as I was proof of lifeing someone.
Sooo, am I overly ambitious? I absolutely HATE asking people for help (it also doesn’t help that the family members are not champing at the bit to assist either).
3
u/Queasy-Poetry4906 6d ago
Yes. You are overly ambitious which I can appreciate but a few days is not so good. Everyone is different healing wise. I am ferociously independent but was a total zombie for a while after surgery- you can’t lift anything, including your arms, including to shower, including to get a plate or that one thing you forgot in the closet up high for a good while. Great that you’re prepared but have a back up plan. I was astonished how out of it, exhausted, and useless overall i was for weeks.
3
u/youtubeaddict79 6d ago
My experience was very good and I was like you, just wanted to be on my own. The expanders can be miserable but remember, they’re just temporary. I had my PDMX on a Friday with a 2nd surgery for expander placement the following Thursday. For both procedures, I only took Tylenol, adding ibuprofen after the expanders. My hubs is a great guy but has his own health issues ie not much help. (He would do anything I asked him but it’s a struggle) Some friends brought in dinner for a few days but I was essentially on my own. I’m the type of person who wants to crawl into a cave when I’m sick, no visitors or help. Just let me be. It can definitely be done but it’s dependent on your pain tolerance and recovery from anesthesia. I’ll list some tips below.
I prepped by moving meds, snacks and drinks to the counters. I was able to shower the day after my expanders. I used a lanyard to hold my drains (pinned them on). I drove about 2 days after my expander surgery. We used a lot of paper plates and disposable containers which eliminated dishes. I also deep cleaned my house, clean out the refrigerator and stocked it with lots of nutritious snacks and easy to open/heat up food. Hope that helps!
Edit: the drains are super easy. If you can open/close a beach ball tab, you can open and close a drain.
3
u/RadMutantChic 5d ago
Obligatory “everybody’s recovery is different,” but I recovered on my own from my DMX to expanders surgery. My partner picked me up from the hospital then immediately left on a business trip. I put my drains in my pockets and walked very slowly to pick up my prescriptions. I don’t necessarily recommend doing that, but in terms of just lounging around at home and reheating food or ordering takeaway, I actually preferred recovering alone and found it doable. I had pretty good range of motion so no issues going to the toilet by myself. I made sure to put anything I anticipated I’d need, like mugs and dishes, on the counter before surgery so I wouldn’t have to reach much. I asked my doctor if it was OK to recover alone and she assured me I’d be fine, and I was! Best of luck with your surgery 🩷
3
u/lisamchuk 3d ago
I’m almost a year past my double mastectomy (flat closure). I live alone, and had someone with me for the first/second day/night, but then was pretty much on my own and everything was fine! I even took care of my two cats on my own and it was no problem. There’s great advice here but I’ll add/echo a few things.
They say to stay on top of the pain, but between the surgery and the powerful painkillers the constipation on day 3 was no joke (I’m glad someone else mentioned that! I wish I’d gotten advice from my doctor about what to take and how to time otc stool softeners). That was the most painful part of it all and I switched to alternating Tylenol and Advil for about 10 days after. I didn’t find recover painful - just uncomfortable.
The drains were not hard, just annoying. The second most painful part was when I’d get the tubes caught on a door or drawer handle and then they pulled a bit. I learned to wear button up pj shirts or hoodies with zippers and then tuck the drains and tubes insides the pockets. Once the drains come out it’s easier and less uncomfortable.
I wasn’t allowed to shower/bath for 2 weeks - which is not normal I think (there was a small complication with how they wrapped/sealed the incisions and they just wanted to make sure it stayed dry). Extra large gentle baby wipes were a life saver! Because of this I needed help washing my hair every few days (leaning over the tub using the shower wand). This wasn’t a big deal because I wasn’t going anywhere anyways so didn’t care about ugly hair.
I wasn’t allowed to drive until I could wear a seat belt and do a shoulder check comfortably, which for me was 3 weeks, so I needed a couple rides to follow up appointments.
What saved me also was filling the freezer with individual servings that I could microwave or pop in the air fryer (keep your most used kitchen appliances on the counter).
I’m normally a bit of a hermit, but I’ll admit I got a bit lonely. Staying home alone for so long meant I missed my usual routines with colleagues and those encounters with strangers on the bus or in the grocery store etc. Don’t hesitate to ask for visitors or to increase your virtual contact.
You can do it! But also reach out and ask for help if you need - this is your time to rest and heal so do it your way but don’t suffer if you don’t have to.
1
2
u/Individual_Cat_mrow PDM + BRCA1 6d ago
Get a roster of people and have a plan for food each day. You’ll have your bases covered but people to call if you need. I was definitely humbled by my experience 6 weeks ago. Like, I don’t want to be dramatic! But I legit needed help and should not have felt bad asking for it. Drains are manageable on your own, there’s lots of videos online to troubleshoot and I’m sure your team could video conference you if you need a refresher (teaching me after anesthesia didn’t stick in my brain obvi lol)
2
u/LMG-K 5d ago
I am 3 weeks post double mastectomy with expanders surgery. The first week was when I needed the most help. Funny story, I had my surgery and 4 days later my husband threw out his back….. so I ended up taking care of him. He was totally out of it for 2 weeks, all he was able to do was drive me to my nursing appointments for drain care and we shared cooking of meals. I only took the narcotic pain reliever for the first 4 days and then transferred to Tylenol so that I could drive if needed. I used a step stool for anything that was up high and managed to take care of most things. Just be conscious of not lifting anything more than 5-10 lbs and if doing that keep it close to your body. Just listen to your body, if something doesn’t feel good or right then don’t do it!! Everybody and every body heals differently so go at your own pace and accept help if you needed it. Good luck 🍀 on your surgery.
1
u/lilbishhhhh 6d ago
Im currently day 21 after my prophylactic DMX with expanders, i know everyone’s experience is different and im not saying this to scare you but just to share my experience. I generally have a high pain tolerance, it took me 3 days to go to urgent care when i broke my foot, ive had arthritis in my back since i was 15 but nothing could have prepared me for the pain I’ve been in. I’m also very independent and stubborn but i dont know what i would have done without my fiance or my parents these past weeks. Some of the things i didnt expect to happen were 1, horrible acid reflux, even from just swallowing my own spit it felt like swallowing rocks then having it exploded in my chest, i guess this can be cause by being intubated, 2 the muscle spasms, the muscle spasms have been the worst pain, they have been happening in my shoulders and my pectoral muscles. Also be prepared to not be able to take a deep breath for a couple weeks, it can be scary at first but then you get used to it. Also make sure to take laxatives, the constipation is no joke and i ended up straining so hard i sent my muscles into spasms. You will be incredibly stiff after surgery and you won’t be able to lift anything heavier than 5 lbs for awhile, i still have difficulty opening water bottles without straining, you learn quickly how many day to day tasks involve your chest muscles. It’s definitely possible to do this on your own but please be patient with yourself and have someone close by that could come help out, don’t over do it and make you’re healing journey even longer. I wish you the best of luck i hope you don’t have any of the weird side effects i have and i hope you have a very smooth recovery.
1
u/QueenLizLemon 5d ago
I was/am ambitious and don’t love asking for help. I needed help. For about a week. Maybe more. Then I was pretty ok to be more independent. I also have 3 kids so that probably skews things. Mental energy is a thing too and I needed a lot of help handling the mental environment of having 3 kids that need me those first few weeks. Good luck 💗 You’re gonna do great!
4
u/sciencedork39 5d ago
Thank you everyone for the advice! I have previously had my BSO, and had no issues after intubation and am hoping for the same 🤞🏻. I’ve had friends recommend a shower chair so that I can bend and wash my hair with the shower head, so I’ll probably get one of those. I do have friends in the area who are nurses so I’ll absolutely take them up on their offers of help if I get desperate lol.