I was naive about surgery recovery

[Ginevra]

One week ago today, I had my lumpectomy and lymph node biopsy. The recovery time listed on the paperwork is “two weeks,” but I clearly had very naive notions about how affected I would be by surgery. 

Before surgery, I made plans to have my duties covered at co-op for last Friday, but I actually thought I was planning out of an abundance of caution so people would not be left in a lurch if it turned out I could not show up Friday. 

Heh. Friday came and went with me not even showered yet. Sunday, I went (rode along in the car) to my son’s baseball game. This was exhausting, painful and I bailed 3/4 through to sit in the car. 

The site where the lymph nodes were removed still hurts quite a bit. (They told me the lymph node site usually is worse than the tumor site.) My use of that arm is still significantly hampered and it is numb along the back of my arm and underarm (also supposedly normal). Yesterday I felt sick, though I checked my temperature and it was normal. I am alert to signs of infection but don’t seem to have any. I think I just may have had exceedingly unrealistic expectations of how bad a smack-down surgery would be. I haven’t even driven a car. I have plans for Thursday in the morning and at night (it is DS’ birthday), but I am leaning strongly towards canceling at least the lunch meeting and hoping I can manage a dinner out with my son for his birthday; I won’t have to drive. 

? Please send tiny violins. I am sad, stir-crazy and need to get groceries. (I do have friends who would get groceries in a heartbeat if I asked, but I didn’t expect it would be necessary.) If you have experience and you agree that this sounds too long to still hurt, tell me and I’ll call my dr. today. 

[Momto6inIN]

I have no experience with surgery, but if you need more time to heal then take it and don't feel guilty! People will understand. I feel like I should be over this morning sickness too and keep making plans as though I'm fine. But I'm not. And overdoing it is not helping me get better sooner. Prayers to you Quill!

[chiguirre]

It wouldn't hurt to call the doctor's office and ask if what you're experiencing is normal. I suspect it is, but just knowing will take a worry off your mind and the nurse might have some good suggestions. I'd ask a friend to shop if you'll actually do that. If you're more like me, I'd use the online shopping service and send your dh or your 18 yo to pick them up. Then I'd crawl back on the couch until Thursday.

Get well soon!

 

[PrincessMommy]

I know... surgery sucks.  From experience I have found that doctors underestimate the amount of recovery time.   Don't feel guilty if you need extra time. 

I get that depressing "I still don't feel well" cabin fever feeling as well.   hugs. 

Edited November 6, 2018 by PrincessMommy

[cintinative]

In today's medical economy, often you are sent home from the hospital to recover when you used to stay in the hospital for several days. Those first three days might have originally be spent in a hospital. Your body needs lots of rest to heal. Do your best to allow it that rest and lean hard on your friends who can help with errands and food.  Watch a mini series you missed, hang out on the couch, and/or read a good book/listen to an audio book. Hang in there!!

[Selkie]

Hugs and I hope you're feeling back to normal soon.

I have a close relative who is a surgeon. When she had surgery herself, she was shocked at how rough the recovery was - she had never realized what her patients were going through until it happened to her.

[mmasc]

My dear friend had this surgery last November and it took some time for her to feel better for sure. I can’t give exact times, but it did seem like she was home and getting stir crazy too. I remember her saying she couldn’t really wear a bra, so even if she felt like getting out, she wouldn’t bc of the bra issue!

Give yourself time. Call your doctor for reassurance (either you need to be seen or not) for peace of mind. Find an awesome Netflix show you haven’t seen, binge watch and just rest. Send *anybody* for groceries, except you. 

[Pen]

I’m sorry.  Pamper yourself. Give your self time. 

And I do agree with calling the office in case something isn’t normal recovery expected. 

 

 

[Guest]

1 minute ago, mmasc said:

My dear friend had this surgery last November and it took some time for her to feel better for sure. I can’t give exact times, but it did seem like she was home and getting stir crazy too. I remember her saying she couldn’t really wear a bra, so even if she felt like getting out, she wouldn’t bc of the bra issue!

Give yourself time. Call your doctor for reassurance (either you need to be seen or not) for peace of mind. Find an awesome Netflix show you haven’t seen, binge watch and just rest. Send *anybody* for groceries, except you. 

Yeah, I have to wear the zip-front compression bra from the hospital definitely continuously for two weeks, but I can easily see this being my type of bra for the foreseeable future. Also, I still cannot wear any over-the-head tops, so I’m getting dang sick of the few things I can wear day or night that zip or button up the front. I have two flannel shirts and one zip up fleece. That’s it. ?

[mmasc]

1 minute ago, Quill said:

Yeah, I have to wear the zip-front compression bra from the hospital definitely continuously for two weeks, but I can easily see this being my type of bra for the foreseeable future. Also, I still cannot wear any over-the-head tops, so I’m getting dang sick of the few things I can wear day or night that zip or button up the front. I have two flannel shirts and one zip up fleece. That’s it. ?

Yes, she was like that too. Time for you to get on Old Navy and order some new flannels!?

[mom@shiloh]

23 minutes ago, Selkie said:

Hugs and I hope you're feeling back to normal soon.

I have a close relative who is a surgeon. When she had surgery herself, she was shocked at how rough the recovery was - she had never realized what her patients were going through until it happened to her.

 

I think that every surgeon should have surgery. ?

[JustEm]

Hope recovery speeds up and things start getting easier.  I've heard many people say that the timeframe surgeons give are often inaccurate

[mom@shiloh]

I don't have any personal experience with surgery, but it seems as if friends who have had various surgeries all say the same thing that you're saying.  Recovery takes waaay longer than they think it will.  I hope you turn a corner soon.

 

[Penguin]

Quill, call your doctor if it will reassure you. I don't remember how long it took me to recover from that surgery...but I at the time, my primary care physician reassuringly told me that he has patients who had BC so long ago they can't remember which side it was on. I thought that was the most ridiculous thing I had ever heard. And guess what? Now I do sometimes have to think about it. 

How many lymph nodes came out? That would impact recovery time. I had three taken out, and I have ever since tried to remember to have my blood pressure taken/blood drawn on the opposite side to avoid lymphodema. I have never had any signs of lymphodema, by the way.

[brehon]

Rest!! My mom was a little older than you when she had this surgery. It took her longer than she thought to feel anywhere close to “better/normal”. And she was (and is today in her mid-70s) a very active, healthy woman. 

It’s never wrong to check in with your doctor just to make sure everything is OK. I suspect your body is telling you to REST. Send dh, elder ds, or a fried to the store or order online and have it either picked up — not by you! — or delivered, if that’s an option. 

I’m sending soft healing thoughts and vibes to you. 

[Bluegoat]

I think this is pretty normal.  My surgery experience has been with c-sections, and I recovered what was considered quickly from them, but I was in bed for three or four days afterward, and very sore for a while.  And the one when I was older was a much, much slower recovery too.

Take it easy, and take advantage of help!

[Katy]

It's normal.  Even 3 weeks would be normal.  There's a reason I was nagging you to take off the fitbit and rest.

[SamanthaCarter]

If it helps, I think just about everybody is naive about (length and difficulty of) surgery recovery. Even those who should know better. >hugs< 

[catz]

I've had several surgeries and I've been surprised every time.  Be gentle with yourself.  You'll get there!  Many hugs to you!  ❤️

[BlsdMama]

1 hour ago, Quill said:

One week ago today, I had my lumpectomy and lymph node biopsy. The recovery time listed on the paperwork is “two weeks,” but I clearly had very naive notions about how affected I would be by surgery. 

Before surgery, I made plans to have my duties covered at co-op for last Friday, but I actually thought I was planning out of an abundance of caution so people would not be left in a lurch if it turned out I could not show up Friday. 

Heh. Friday came and went with me not even showered yet. Sunday, I went (rode along in the car) to my son’s baseball game. This was exhausting, painful and I bailed 3/4 through to sit in the car. 

The site where the lymph nodes were removed still hurts quite a bit. (They told me the lymph node site usually is worse than the tumor site.) My use of that arm is still significantly hampered and it is numb along the back of my arm and underarm (also supposedly normal). Yesterday I felt sick, though I checked my temperature and it was normal. I am alert to signs of infection but don’t seem to have any. I think I just may have had exceedingly unrealistic expectations of how bad a smack-down surgery would be. I haven’t even driven a car. I have plans for Thursday in the morning and at night (it is DS’ birthday), but I am leaning strongly towards canceling at least the lunch meeting and hoping I can manage a dinner out with my son for his birthday; I won’t have to drive. 

? Please send tiny violins. I am sad, stir-crazy and need to get groceries. (I do have friends who would get groceries in a heartbeat if I asked, but I didn’t expect it would be necessary.) If you have experience and you agree that this sounds too long to still hurt, tell me and I’ll call my dr. today. 

I have no experience whatsoever - but girl, that's major surgery, a huge shock to your poor body. I think you should just go to bed and have every person everywhere wait on you.  
((Hugs)) Please don't push yourself too much, too fast.  The other people can do all the things.  Rest. Relax. Recover.  ((More Hugs))

[Guest]

28 minutes ago, Penguin said:

Quill, call your doctor if it will reassure you. I don't remember how long it took me to recover from that surgery...but I at the time, my primary care physician reassuringly told me that he has patients who had BC so long ago they can't remember which side it was on. I thought that was the most ridiculous thing I had ever heard. And guess what? Now I do sometimes have to think about it. 

How many lymph nodes came out? That would impact recovery time. I had three taken out, and I have ever since tried to remember to have my blood pressure taken/blood drawn on the opposite side to avoid lymphodema. I have never had any signs of lymphodema, by the way.

I think they removed three. 

I didnt know about not using that side for blood pressure or ivs. Interesting. 

[Guest]

25 minutes ago, HeighHo said:

 

Try a loose fitting soft t-shirt, put on surgery side arm first, then over head and other arm - you'll need assistance at first.

Your next bra may be a sleep bra, the sports type that is a soft fabric...ask the nurse or the people who fit the masectomy patients for suggestions. Something like this:  https://www.target.com/p/hanes-174-women-s-comfortflex-fit-174-stretch-cotton-sport-bra-h570-2-pack/-/A-16636577?preselect=14401919#lnk=sametab that won't chafe the lymph node removal site.

Be sure and do your stretching and PT exercises as scheduled. 

and so true that recovery from surgery is work.  Time to catch up on your reading.

I did put on a soft, loose top with partial buttons to sleep in. Getting it on was okbut I could not take it off myself. 

[CAJinBE]

Don't push yourself too much. For my back surgery, the surgeon said I would be "up and around" the next day. Well, his definition of up and around and mine were obviously not the same thing unless you can call walking 100 meters and then resting for a few hours up and around. I naively thought I would be going to my co-op's planning meeting the following week but I could't even sit up for more than 15 minutes by then much less drive myself anywhere. I hope you are able to get the rest you need and please ask your friends for help. I didn't want to ask mine for help but they were so eager to bring food we finally gave in and it was actually a wonderful feeling to have support. 

[Guest]

2 minutes ago, HeighHo said:

 

It gets better.  Be sure and do the stretches/PT as scheduled. 

They did not give me exercises. They only said to move that arm around in a normal manner. (They said not to favor the arm to the point I’m not moving it.) 

[Guest]

3 minutes ago, CAJinBE said:

Don't push yourself too much. For my back surgery, the surgeon said I would be "up and around" the next day. Well, his definition of up and around and mine were obviously not the same thing unless you can call walking 100 meters and then resting for a few hours up and around. I naively thought I would be going to my co-op's planning meeting the following week but I could't even sit up for more than 15 minutes by then much less drive myself anywhere. I hope you are able to get the rest you need and please ask your friends for help. I didn't want to ask mine for help but they were so eager to bring food we finally gave in and it was actually a wonderful feeling to have support. 

That’s pretty much identical to how I feel. When I went to the baseball game, just walking on the ground seemed to jolt the pain. The hardness of the ground was actually painful! 

I walked out to my mailbox and felt like I had run a 5K. 

[school17777]

I had carpal surgery a month ago and yesterday was the first day that my hand felt normal while I was cleaning for company.  Before yesterday, my wrist would let me know when enough was enough.  Everyone acts like carpal surgery is no big deal so I was surprised/caught off guard I was/am still feeling the effects.

Let yourself recover.  Don’t do anything that could harm your recovery.

[mommyoffive]

44 minutes ago, BlsdMama said:

I have no experience whatsoever - but girl, that's major surgery, a huge shock to your poor body. I think you should just go to bed and have every person everywhere wait on you.  
((Hugs)) Please don't push yourself too much, too fast.  The other people can do all the things.  Rest. Relax. Recover.  ((More Hugs))

 

Great advice.  I haven't had surgery, so I don't know what is normal.  But I say listen to your body.  Go slow.  Send the kids or dh to the store.  Order online and have them pick it up if that helps.  Let them help you for  little bit.  I know it is so hard to do that as the mom.   Hunker down and recover right now, it is the perfect time to be snuggled on the couch watching movies.  

I hope it gets easier in a few days. 

[Annie G]

Sorry, Quill. You’re an overachiever and recovery is especially hard on folks like that because they are used to Getting Things Done.  

When I have been laid up for more than a few days, I start feeling MORE tired instead of more rested. It’s a crazy thing, but it happens to me every time. After three days of an illness dh gets his energy back, but for me, laying around doing nothing (but healing) makes me feel more exhausted.  Have you ever gotten into a habit of taking a little nap at a certain time and then you notice that you are tired at that time every day? It’s like that for me- if I lay around sick, it makes me more tired.  But you can’t help it. 

I hope you feel better soon and can start to use your arm a little better. FWIW, a friend’s dd just had some lymph nodes removed (she’s 17 and in excellent shape) and it took her nearly three weeks to be able to lift her arm over her head even a little. Like you, she underestimated her recovery and as the drum major, she thought she’d be leading the marching band a week after surgery. Um, nope.  Give yourself some more time...it’ll get better. 

 

[klmama]

((Quill))  Everyone I know who has had sugery has told me it hurt more and for longer than they expected.  It seems many surgeons don't mention much about the recovery details. Take the time you need to rest and recover.  I hope you start to feel better soon.

Edited November 6, 2018 by klmama

[ScoutTN]

1 hour ago, PrincessMommy said:

I know... surgery sucks.  From experience I have found that doctors underestimate the amount of recovery time.   Don't feel guilty if you need extra time. 

I get that depressing "I still don't feel well" cabin fever feeling as well.   hugs. 

This, for sure! I have experienced this myself with disc surgery, and witnessed it in my family members. 

It's not just you, Quill. Keep your calendar uncluttered and take it easy until your really feel well. Praying for a good recovery, no complications and no recurrance of the cancer! 

[Another Lynn]

Cancel lunch on Thursday.  Go ahead and ask for a sub again this Friday.  You need rest!  This is the time to put yourself first!  (I probably wouldn't even go to dinner for ds's birthday.)

[Rachel]

((((Quill)))))

[mom@shiloh]

2 hours ago, mom@shiloh said:

 

I think that every surgeon should have surgery. ?

 

I ought to add that two of my brothers are surgeons and they gained quite a bit of empathy after having some physical issues themselves.

[Pink and Green Mom]

Many, many hugs to you, Quill.

[Soror]

Lots of hugs. ITA with everyone else, cancel the lunch and give yourself plenty of grace. It's a shame people get kicked out of the hospital so soon these days ?

[KungFuPanda]

It’s almost always more efficient to recover completely before you try to get back out there. Exhausting yourself can set back the healing process. LET your friends shop for you. THEY DO NOT MIND. Find something you enjoy doing at home that you never have time for. Read, knit, nap, whatever . . . just STAY DOWN until you feel human. 

Dr. Panda

[goldberry]

That is so frustrating... unfortunately, our bodies seem to insist on their own timetable and refuse to accommodate any other!  Be gentle and patient with yourself...

[Monica_in_Switzerland]

As someone who has gone into surgery thinking, "Oh those recovery estimates are clearly for the WIMPS getting this surgery" and then getting totally smacked down myself... you have all my sympathy.

[Terabith]

When I had my breast reduction surgery, I was surprised by how long recovery took.  I didn't have too much pain, but I was absolutely exhausted.  It really took me a full three weeks to be at all functional, and even then I got tired quickly for awhile.  It just takes time to heal.

[MrsRobinson]

Dh had major surgery a few months ago and it was a full month before he felt like himself.

A agree with others. Cancel the lunch on Thursday, get a co-op sub for Friday, and maybe even see if you could do take out for ds's birthday. Sushi or something more special than what you'd normally do for take out. Order groceries online and have someone else pick them up. 

Take all the time you need to recover and no guilt! 

[zimom]

Quill, my surgery may have been a little more involved (mastectomy with reconstruction) but I can tell you that the side with the lymph node removal has been a MUCH bigger deal.  Mobility on that side has been severely limited even 8 months later (still can't raise that arm) and recovery took forever.  Pace yourself and let others take care of yourself.  If PT has been recommended, please follow through.  

And as someone mentioned upthread, no IVs and no blood pressure reading on that side ever.  

[katilac]

Cancel all the things. That ensures more rest and removes the anxiety about being able to do them or not. 

It sounds normal to me. The paper said two weeks and I think they UNDER estimate in general. But certainly call the doctor and check in. Follow-up questions are part of their job. 

Sending you a whole parade of violins playing soothing sympathy music. 

[Junie]

3 hours ago, texasmom33 said:

This is random, but did they mention to you that in the future you might avoid IVs and even a blood pressure cuff on that arm where the node was removed? That may not be standard of care anymore- but it was not too long ago. Just thought I’d mention. 

I agree with PP that in the past they would’ve have kept you longer. Now with what they know of infection, your odds are actually much worse in the hospital so that is the reason usually behind early discharge timesX  in most cases (rather than money). The less time you are in the hospital the lower your rate of infection. 

Do not be afraid to ask for more pain relief. Don’t try to tough it out. I would call the doctor and tell the nurse where you are on the pain scale. And ask for better pain medication if you think you need it. A body in pain heals more slowly. That is a medical known- and they aren’t going to think you’re a pill head for asking. Don’t hurt if there is an option. 

I hope you start feeling better soon. I think 2 weeks will probably be your turning point. Your body was just really traumatized, and you’ve been under an incredible amount of stress which also takes it toll. Rest up. Clear the calendar. Let your people take care of you. Many hugs. 

This.  Take pain meds if you need to and let everyone else do everything for you.

(((Quill)))

[Liz CA]

The most helpful thing a nurse said to me after hysterectomy was: "You have one chance to heal right, only one. Take the time."

Don't go for groceries. Send someone else. Pace yourself. If you feel like a short walk, fine but don't run for half an hour. This is a time to pamper yourself a bit.

I don't think we have the tiny violins anymore but I am sending some you have to imagine and along with those lots of hugs!  

[creekland]

Sending you tons of hugs from here as you go through these days.

From what I've seen via friends/co-workers with bc and then adding in my own two carpal tunnel surgeries, recovery time needed is variable.  With my two carpal tunnel surgeries, the first one took about 6 weeks to feel decent and a couple weeks to even feel "ok" with some movement.  I expected the same with my other hand later on in the year and was totally surprised when it felt fairly normal practically the next day.

If two surgeries can produce such amazing differences in time on the same body, I doubt there's anything that can be predictable overall.

It's ok to let your body heal.  It's ok to let others do shopping for you - not only is that helpful for you, it's helpful mentally for them because most humans truly want to help their friends/family so it will make them feel good. (You've allowed them to have a good mental moment.)  It's ok to dream about what you want your reward to yourself to be when you've reached the end of the tunnel (or stopping points along the way).

I wish you well - adding some more hugs because mentally I can understand the frustration and concern.

FWIW none of my friends/co-workers doctors have ever minded a phone call checking on concerns.  I think those drawn to practicing oncology have that extra compassion needed.  (Not sure about surgeons - talking about the oncologist and office.)

[MrsRobinson]

I thought of something else.

Dh's pain meds had one refill with it. We filled it just in case and he was soooo glad we did because once he was getting more active (again, that was about a month after surgery) he would still be in considerable pain at the end of the day. Being able to take a pain pill at bedtime, helped lower his pain level and get decent sleep. Not every night, just on days where he upped his activity level another notch. 

[Guest]

42 minutes ago, MrsRobinson said:

I thought of something else.

Dh's pain meds had one refill with it. We filled it just in case and he was soooo glad we did because once he was getting more active (again, that was about a month after surgery) he would still be in considerable pain at the end of the day. Being able to take a pain pill at bedtime, helped lower his pain level and get decent sleep. Not every night, just on days where he upped his activity level another notch. 

I dont even have any Rx pain medication, just OTC. I have been taking Advil PM at nights, which helps me sleep well. I have actually slept well every night and my little surgery pillow has been a God-send. I just have no energy whatsoever during the day and I didnt expect that. 

[Tiberia]

Quill,

You are not a wimp. You need to schedule your rest and recovery as much as you would schedule other events. Plan on being down for another week at least. Get some great movies, get a music playlist, arrange for people to help you. You'll know when you're ready for more activity, and it isn't now. Walk around your house until if you must move around, but don't do outings until your exhaustion and weakness improve. 

I've had lumpectomies and a mastectomy. The lumpectomy was actually more painful because any movement hurt the surgery site and the tissue around it. You will do mobility and range of motion exercises later, but for now, make sure the surgical site heals up and your body has time to get over the whole trauma you've undergone. It's your whole body, not just the surgery site, that needs time to recover. 

People will understand. Plus, you will realize the world can and will go on without you. Not being snarky, but it's just another reality of getting cancer; you're replaceable. It's a hard reality, but can also be freeing and deeply meaningful. You're a thoughtful person, so I know you're already learning a lot of great truths from your experience.

All the best.

[El...]

Healing is surprisingly demanding! Are you eating enough? I found that important after a surgery. You need people to bring you lots of good fruit and veggies, and enough fats, all cut up for you. I hope you are able to give yourself a break and have all the support you need. 

[MrsRobinson]

2 hours ago, Quill said:

I dont even have any Rx pain medication, just OTC. I have been taking Advil PM at nights, which helps me sleep well. I have actually slept well every night and my little surgery pillow has been a God-send. I just have no energy whatsoever during the day and I didnt expect that. 

That is so great that you are not experiencing much pain and are sleeping well. 

Dh still doesnt have any energy but he's been sick and had no energy for a long time. It kinda seems normal now, lol! ?