Hello - one week post op

ready2bedone

Hi all, this is my first post. I am one week post op - double mastectomy and sentinel node biopsy. I am anxiously awaiting my pathology report. I am about to jump out of my skin today, both hoping the phone will ring but dreading it at the same time, so thought I'd spend the time here with others who can relate.

I was diagnosed with ICD after a routine mammo showed a suspicious area and I was called back for additional views, followed by ultrasound. As soon as I saw the image on the screen, I knew it was cancer. Had a biopsy a fews days later which confirmed. It's been a whirlwind since and I don't think it really set in until today when I woke up feeling like a cancer patient and I hate this feeling. Feeling particularly gross today. Hence my username.

I am already sick of the drains and wanting so badly to rip them out! I was disappointed yesterday with my first postop appt that I didn't get any removed, though I guess that was wishful thinking. Where they go in is still very sore, is that typical? About when do they stop hurting? It's hard to reach for anything without it feeling like I've been stabbed. Any tips on easing pain from those?

Rrobin0200

There's no easy way around the drains, unfortunately. I had my four drains in for 1.5 weeks, and I hated every minute of it. I literally couldn't recover from surgery as they were in the way. Try draping them around your neck while in the shower. Other than that, pin them to your shirt. But I totally get the pain from accidently pulling them. Best of luck.

ravzari

Unfortunately, they only stop hurting once they're removed.

Draping them around your neck or pinning them to your shirt so there's less movement from the tubes can help, but they're always going to hurt if they get tugged or pulled due to the stitch holding them in place but at one week post op any reaching is going to hurt and you should try to avoid doing it and ask someone else to get the thing you can't reach with t-rex arms (i.e. your elbows pinned to your sides ) or, if you haven't got anyone to help you, consider getting one of those reaching/grabbing arm things from Walgreens to avoid having to stretch your arms out or up to get things.

At one week post op you shouldn't be doing much reaching at all anyway, as it'd hurt regardless. Full range of motion won't start coming back until 5+ weeks and, until then, it's not a good idea to be reaching out or up if you can help it.

ready2bedone

Thanks RRobin0200 and ravzari! I guess I will have to just be patient. Funny you mentioned a t-rex, that's exactly what I was thinking I looked like earlier trying to fix my lunch with my elbows pinned to my sides. It's the only way it doesn't hurt. If I forget, it feels like I've just been stabbed all over again.

lrwells50

Actually, my drains only hurt if I caught them on something. I had my daughter get one of those canvas nail belts from Home Depot, and stuck them in there. Much better, and really stylish....

From what I can tell, all surgeons are different about what they want their patients to do. Mine said don't push it, but if I felt like reaching for something, go on and try it. I'd say I only had to have help for something that was almost out of my reach anyway, or was heavy after two weeks.

My biggest problem with the drains is that they just wouldn't slow down. My PS took them out after 3 weeks, because of a fear of infection. His PA aspirated fluid about 5 times over the next 6 weeks. Luckily, I was still numb.

BellasMomToo

ready2bedone: I had one drain after my UMX. There was a stitch holding it in place. The weight of the drain made the drainage site hurt. Have you tried taping the drain tube to your body with enough slack so it doesn't hang by the stich(es)? The taping really helped me.

My drain was removed one week after surgery, but drainage site was sore, then tender, for about 6 weeks.

ready2bedone

Lrwells50 and bellasmomtoo - a volunteer had made a tool belt sort of thing that they gave me to hold the drains. But the fabric is really rough and there is a big buckle in the back which makes it impossible to sleep in. I made something softer but it wasn't deep enough to hold the bulbs in very well and they popped out a few times. I got the postop camisoles and was told yesterday I could wear them now instead of the compression bra and they have pockets inside for the drains. Where they attach to my body is under this big clear bandage so I don't think they are pulling from getting caught or hanging from the stitches. But even still it feels like I'm being stabbed if I reach for something over a foot away. Just having to learn to keep my elbows glued to my sides and not reach for anything. Frustrating, because I forget every now and then and it takes a few hours for it to quit hurting again! Apparently I'm a slow learner!

I read back over all the other posts in this thread and it was very informative. I wish I had found this before my surgery to ask questions, vent, etc. I don't remember who mentioned constipation but OMG, that was awful! I have to take 4 stool softeners, senna, probiotics and fiber supplements all the time anyway, so general anesthesia and pain meds made things worse than they've ever been. I was so afraid I was going to have to go to the ER for an impacted bowel and absolutely didn't want that indignity on top of everything else. So, I managed, with great difficulty, to get "unclogged" at least for now with a nasty set of hemorrhoids to show for it. I'll do everything in my power to avoid pain meds now!

MinusTwo

ready - there is a great constipation thread on BCO. Lots of good hints to "go" and to keep it even.

MinusTwo

Here you go. Lots of great tips.

https://community.breastcancer.org/forum/6/topics/...

ready2bedone

Thanks Minus Two! That will definitely come in handy!

MsLin

Ready - 1 week post is normal to feel completely frustrated. I was there. Each week gets a little better. It wasn't until week 4 that I felt somewhat human. I was actually most comfortable once I had my first tissue expander fill. It changed the shape of my chest just enough to allow me to sleep a little better. By the 6th week post surgery I was able to spend 1/2 a day outside pulling weeds (with a few breaks in between).

Make sure to keep up on a regimen of stool softeners if you are taking narcotic pain killers. They cause additional intestinal issues. Last but not least are the muscle relaxers. Take them! I stopped taking narcotics as soon as possible, but still need muscle relaxers occasionally (7 weeks post). Then it is only after an expander fill or if I've had lots of chest cramping while I sleep.

It will get better

ready2bedone

Thanks MsLin! I look forward to feeling human again. There is nothing human about how I look or feel at this point. Bad horror movies come to mind. :-)

Good advice on the muscle relaxers. I don't have cramping, but they do seem to help with the pain without the constipating side effects of narcotics.

My PS put my expander under my skin instead of muscle (not sure why he did that) so I am guessing it won't be as painful as it would have been if it was under muscle.

MsLin

Ready - "Bad horror movies" Ha! Most ladies call them foobs or foobies. I call them my franken-boobs. I just had a 30cc fill today and it wasn't as bad as the last, but on the drive home my back started to tighten up. I hate that.

My guess is that the PS felt that they'd stay in place and there was enough skin to protect them. I talked with my PS about under the muscle or not. He said it just depends on thickness of skin and such. I am very thin skinned so he went under the muscle. If they can go on top of the muscle it's better because they aren't stretching muscle too. Fills shouldn't be too bad for you, fingers crossed

ready2bedone

MsLin - I was surprised to wake up a and discover that I was almost my normal bra size! I wore a 34 D but had told the PS 34 C since it's a lot easier to find that size! Most of my volume before was skin. My poor boobs were deflated tube socks. So he had a lot of skin to work with so it won't need much stretching.

ravzari

Yeah, in all honesty, I was a T-rex for about the first 3 weeks before I slowly started stretching my arms out by tiny amounts to see how far I could go before it hurt.

By 3-4 weeks I was able to extend my arms all the way out in front or to the sides without pain, but they weren't kidding when they said it'd be about 6 weeks before I'd be able to reach over head without pain.

Even without pain it still felt 'tight' (like I was pulling on something that didn't necessarily want stretching) for probably close to 5 months, and that tight feeling while reaching overhead faded completely around the 9 month mark.

The first three weeks were the most frustrating, though as I felt like I couldn't do anything (including get myself a cup for coffee or water) without needing to ask my husband to reach something for me. I'm super independent on my best of best days and absolutely hated not being able to do things for myself.

ready2bedone

Ravzari - being a T-rex for the past few days has helped tremendously with pain. A bonus is I think it also helped reduce my drain volume. I am under the amount my PS wants me to be in 3 of the 4 drains now and the 4th is very close. So I may get them all removed at my next appt Weds! 😀😀

After that, they ordered physical therapy to get my range of motion back. Did you have PT?

Piscean

Ready2bedone,

I had a laugh...not at your expense really. I read your user name as "ready to bed one" and wondered where that came from! ?????

Two years since my mastectomy and I cannot remember the pain. I know it was really bad for me; I was on morphine for a week. The surgeon was all up in my axilla and said it was a "very difficult" mastectomy.

I remember the pulling, pinching, and stabbing feelings. But gratefully, the knowledge of intensity is all but forgotten.

I do know that I was unable to press my hands above my chest while laying down when I first started back to exercising. I couldn't even press my hands! Empty hands! WTF? Now, two years later, I can do 15 push ups (modified of course because the surgeon cut my pectoral muscles).

It DOES get better. Allow yourself extra time to heal and get help with everything that you can in the first month or so.

Then, some day you will look back and wonder, "how bad was it really?"

Hopefully, like me, you won't remember how bad it truly was.

Hugs!

ready2bedone

Hi piscean! LOL! Thanks for the laugh. 🤣🤣🤣🤣 I probably should have thought that out a bit more when I chose my username! I'll just blame it on the drugs. 🙃

I remember just days after childbirth saying "that wasn't so bad!" while during it I felt like I was being ripped into pieces by a school of sharks! That wonderful pain amnesia, one of nature's greatest gifts to us. Thanks for the reminder and encouragement.

ravzari

I didn't have PT, but I did look up some post-mastectomy stretches on Youtube and did those after all of my stitches were out.

MinusTwo

I hope all of you will remember "just because you can doesn't mean you should". Check with your doc before starting ANY exercises. Many docs won't let you lift your arms above your shoulders. And certainly not carry a gallon jug of milk. I'm all for exercise, but please ask your doc, take it easy and build up gradually.

SummerRain

ready2bedone - If your insurance covers PT, by all means do it. It has been the single most normalizing part of this journey. And your physical therapist should specialize in breast cancer or lymphedema.

MsLin

I second SummerRain's sentiment about PT. Mine does lymphatic massage and it is very relaxing. While I was over at my cancer center today for an appointment I scheduled 4 more PT appointments. I can't get in until July, but it will be soooo worth it

NotVeryBrave

Normalizing is a good adjective for PT! I'm so glad I'm going. I've got really good range of motion already back and I think it's helped with so many of the weird sensations.

I have a little "cording" under each arm and they use massage to help loosen that. They've also explained to me about massaging the implants to help keep them soft and discourage internal scar tissue as well as different types of touch on the hypersensitive upper chest to "retrain" the nerves.

My PS didn't tell me any of this.

ready2bedone

Thanks for explaining more about PT! I kept thinking I wasn't going to need it but it sounds like a good idea.