Recovery from breast removal surgery

[Garga]

My dh had rotator cuff surgery. He was told he'd be out of work for a week to recover. Turns out, he was out for 6 weeks and had extremely limited ability. He's still waiting to be able to lift more than 5 lbs with his surgery arm and it's been 4 months. We were 100% not prepared by our medical providers that his life would be so drastically affected by the surgery.

 

Last week my MIL had to have an injection in her eye. She was told pretty much nothing about what to expect. Turns out, she can't drive for 4 weeks. She has bright lights flashing in her eyes and is in much more pain that she'd thought. She was 100% not prepared by her medical providers that her life woudl be so drastically affected by the surgery.

 

These episodes are only the recent ones. I have many more stories of medical providers not telling their patients what to expect.

 

SO. With that said. I have a relative who is in poor health who lives alone. She is having surgery to have a breast removed. She will be in the hospital for one day and then sent home.

 

Tell me the truth. What will her recovery be like? Is she going to be able to live alone the day after surgery? Will she be able to make meals for herself, or will she be hopped up on some sort of pain meds that make it dangerous for her to use knives and fire?

 

When one looks online at things like WebMD, they give a very basic picture of recovery. But what's the real story? What's the nitty gritty? Will she be able to put a shirt on by herself?

 

Do I need to clear my schedule to go help her with basic things?

 

Or will she really be able to have a piece of her body cut off and then be a-ok the day afterward, all by herself?

 

(She already has an oxygen tank to deal with and can't walk more than a little bit at a time--she uses a wheelchair to do her shopping. She has MS. She's not robust to begin with.)

Edited December 8, 2015 by Garga_

[Laurie4b]

The pain level can really vary, so one person's experience might not predict another's. Generally some kind of pain medication is needed. It would be nice for a person who had just had the surgery to have meals made for a day or so. Using one's arm on the side of the mastectomy could be painful. She should probably be able to dress herself. 

 

It shouldn't have a lot of surprises, but there may a day or two when the person would appreciate help. 

 

ETA: BTDT. 

Edited December 8, 2015 by Laurie4b

[StephanieZ]

I don't have personal experience with this, but from other surgical recoveries with loved ones, I'd say, yes, plan to clear your schedule. I'd also try to BE THERE at the hospital to advocate for her NOT being discharged right away. In fact, if she's on Medicare, I'd fight to have her stay for at least 3 days to qualify for Medicare to pay for a rehab stay and/or nursing home for recovery. I'd also NOT LET THEM discharge her until they have helped you arrange (and get Medicare to pay for ideally) at home nursing assistance. 

 

Talk to the Drs. Make sure every one knows, over and over, that she is frail and has no at-home help. She must get help. The easiest way to have that happen is AT THE HOSPITAL BEFORE DISCHARGE. Ask to talk to the social worker. Insist that she can't be discharged and has no where safe to go. 

 

FIGHT. ADVOCATE. SUPERVISE.

 

Be there PERSONALLY in the hospital to see if she can handle bathroom use by herself. Make sure she has peed and pooped repeatedly on her own and can wipe/wash/dress/etc. (The staff will often think she can, or not even check. They might pull the catheter and consider her good to go . . . But that is often NOT the case.) Make sure she'll be able to prepare meals and eat. And drive??? Make sure her home is stocked with freezer/convenience meals or be prepared to do it yourself. If she can't go home safely . . . FIGHT THE DISCHARGE.

 

FWIW, when my mom was discharged after 4 nights in patient after GYN-reconstructive surgery (at John Hopkins, FWIW), she could NOT pee on her own. So, late Friday night (discharged on a Friday), I had to run to an all night super-pharmacy 20 miles away to get catheters while my PEDIATRICIAN best friend came over and catherized Mom. If my friend hadn't been able to do that, I'd have had to take Mom to an ER to get the urine out, and Hopkins was 100 miles away . . . NOT GOOD. The hospital nursing staff had pulled the cath maybe 12 hours before discharge and claimed she could pee on her own. Not so . . . I was younger and less experienced, so I didn't know to supervise that MYSELF. I know better now. Don't be shy about respecting bathroom privacy while in the hospital!! It's a hell of a lot worse if you have to figure out how to catheterize her yourself after discharge when she is in pain, highly medicated . . .

 

Often times, they are relying on someone (you) to step in and be her nursemaid. REFUSE! DO NOT TELL THE STAFF THAT you can/will be there with her! (Even if you CAN/WILL, do NOT TELL THEM.) If they can discharge her to "your care" that makes it a lot easier for them to avoid providing/offering professional or in-patient services. 

 

Monitor her go-home meds. Be sure she has what she needs and can handle the medication schedule. (Doubtful for several days at least!!) Will she even be able to pick up her RXes? Probably not!!!

 

There are many ways the system can help someone, but it often requires an advocate to make it happen. Be that advocate, but don't let the system assume you will provide hands-on care. Make CLEAR that you CANNOT DO THAT. 

 

I would never sign a release form of any sort. 

[Alisa in Florida]

I had both breasts removed, so maybe one isn't as bad, but there is no way I could have been left alone for the first two weeks. I couldn't do anything for myself. Couldn't even get out of a chair without help. It also may take several days to recover from the anesthesia. I really just slept most of the first week. If she has a surgical drain, she should probably have a nurse come to the house for a few days until she's able to handle that on her own.

 

She may not feel like eating much  at first, but it would be a good idea to provide meals for her. I could function after two weeks, but it was a full six weeks before I felt 100%.

[Laurie4b]

I don't have personal experience with this, but from other surgical recoveries with loved ones, I'd say, yes, plan to clear your schedule. I'd also try to BE THERE at the hospital to advocate for her NOT being discharged right away. In fact, if she's on Medicare, I'd fight to have her stay for at least 3 days to qualify for Medicare to pay for a rehab stay and/or nursing home for recovery. I'd also NOT LET THEM discharge her until they have helped you arrange (and get Medicare to pay for ideally) at home nursing assistance. 

 

Talk to the Drs. Make sure every one knows, over and over, that she is frail and has no at-home help. She must get help. The easiest way to have that happen is AT THE HOSPITAL BEFORE DISCHARGE. Ask to talk to the social worker. Insist that she can't be discharged and has no where safe to go. 

 

FIGHT. ADVOCATE. SUPERVISE.

 

Be there PERSONALLY in the hospital to see if she can handle bathroom use by herself. Make sure she has peed and pooped repeatedly on her own and can wipe/wash/dress/etc. (The staff will often think she can, or not even check. They might pull the catheter and consider her good to go . . . But that is often NOT the case.) Make sure she'll be able to prepare meals and eat. And drive??? Make sure her home is stocked with freezer/convenience meals or be prepared to do it yourself. If she can't go home safely . . . FIGHT THE DISCHARGE. Driving is cleared after about a week, IIRC.

 

FWIW, when my mom was discharged after 4 nights in patient after GYN-reconstructive surgery (at John Hopkins, FWIW), she could NOT pee on her own. So, late Friday night (discharged on a Friday), I had to run to an all night super-pharmacy 20 miles away to get catheters while my PEDIATRICIAN best friend came over and catherized Mom. If my friend hadn't been able to do that, I'd have had to take Mom to an ER to get the urine out, and Hopkins was 100 miles away . . . NOT GOOD. The hospital nursing staff had pulled the cath maybe 12 hours before discharge and claimed she could pee on her own. Not so . . . I was younger and less experienced, so I didn't know to supervise that MYSELF. I know better now. Don't be shy about respecting bathroom privacy while in the hospital!! It's a hell of a lot worse if you have to figure out how to catheterize her yourself after discharge when she is in pain, highly medicated . . .

Mastectomy patients are not  catheterized. When I had it done, it wasn't even under general anesthesia, but under a block, similar to an epidural. It is considered outpatient. They schedule it so that you are in the hospital 23 hours not 24. 

Often times, they are relying on someone (you) to step in and be her nursemaid. REFUSE! DO NOT TELL THE STAFF THAT you can/will be there with her! (Even if you CAN/WILL, do NOT TELL THEM.) If they can discharge her to "your care" that makes it a lot easier for them to avoid providing/offering professional or in-patient services. 

 

Monitor her go-home meds. Be sure she has what she needs and can handle the medication schedule. (Doubtful for several days at least!!) Will she even be able to pick up her RXes? Probably not!!! I needed very few pain meds. Some women need more. I think I took 3. 

 

There are many ways the system can help someone, but it often requires an advocate to make it happen. Be that advocate, but don't let the system assume you will provide hands-on care. Make CLEAR that you CANNOT DO THAT. 

 

I would never sign a release form of any sort. 

The surgery you are describing sounds a lot more complicated to care for post-discharge than a mastectomy.

[trulycrabby]

I don't have personal experience with this, but from other surgical recoveries with loved ones, I'd say, yes, plan to clear your schedule. I'd also try to BE THERE at the hospital to advocate for her NOT being discharged right away. In fact, if she's on Medicare, I'd fight to have her stay for at least 3 days to qualify for Medicare to pay for a rehab stay and/or nursing home for recovery. I'd also NOT LET THEM discharge her until they have helped you arrange (and get Medicare to pay for ideally) at home nursing assistance.

 

Talk to the Drs. Make sure every one knows, over and over, that she is frail and has no at-home help. She must get help. The easiest way to have that happen is AT THE HOSPITAL BEFORE DISCHARGE. Ask to talk to the social worker. Insist that she can't be discharged and has no where safe to go.

 

FIGHT. ADVOCATE. SUPERVISE.

 

Be there PERSONALLY in the hospital to see if she can handle bathroom use by herself. Make sure she has peed and pooped repeatedly on her own and can wipe/wash/dress/etc. (The staff will often think she can, or not even check. They might pull the catheter and consider her good to go . . . But that is often NOT the case.) Make sure she'll be able to prepare meals and eat. And drive??? Make sure her home is stocked with freezer/convenience meals or be prepared to do it yourself. If she can't go home safely . . . FIGHT THE DISCHARGE.

 

FWIW, when my mom was discharged after 4 nights in patient after GYN-reconstructive surgery (at John Hopkins, FWIW), she could NOT pee on her own. So, late Friday night (discharged on a Friday), I had to run to an all night super-pharmacy 20 miles away to get catheters while my PEDIATRICIAN best friend came over and catherized Mom. If my friend hadn't been able to do that, I'd have had to take Mom to an ER to get the urine out, and Hopkins was 100 miles away . . . NOT GOOD. The hospital nursing staff had pulled the cath maybe 12 hours before discharge and claimed she could pee on her own. Not so . . . I was younger and less experienced, so I didn't know to supervise that MYSELF. I know better now. Don't be shy about respecting bathroom privacy while in the hospital!! It's a hell of a lot worse if you have to figure out how to catheterize her yourself after discharge when she is in pain, highly medicated . . .

 

Often times, they are relying on someone (you) to step in and be her nursemaid. REFUSE! DO NOT TELL THE STAFF THAT you can/will be there with her! (Even if you CAN/WILL, do NOT TELL THEM.) If they can discharge her to "your care" that makes it a lot easier for them to avoid providing/offering professional or in-patient services.

 

Monitor her go-home meds. Be sure she has what she needs and can handle the medication schedule. (Doubtful for several days at least!!) Will she even be able to pick up her RXes? Probably not!!!

 

There are many ways the system can help someone, but it often requires an advocate to make it happen. Be that advocate, but don't let the system assume you will provide hands-on care. Make CLEAR that you CANNOT DO THAT.

 

I would never sign a release form of any sort.

Excellent advice. I am going to print this post to keep for future reference. Thank you!

[Starr]

I would think they would send her to rehab until she can manage all her activities of daily life. ADLs as they say. Don't take her home in your care unless you can stay with her 24 hours a day.

[Garga]

Oh bother. It sounds like a wide range of experiences. From a few pain pills to weeks out of action.

 

She wouldn't be released to my care. Her brother and sister-in-law (my mil and fil) would be mostly doing things, but I'm trying to help as well of course. We're trying to figure out how best to help and how much help she'll need. I won't be at any doctor's visits or hospital visits because she's veeeeeerry private. I think she's ticked off that anyone even knows what's going on. If she could drive, I don't think she'd have even told anyone.

 

My MIL and FIL have offered to have her stay with them, but she doesn't want to do that. She wants to be in her own home. But we need to be getting in there to help. I found out that a nurse will come by at least once a day. But that's all I know.

 

I've asked my MIL to stress to the doctor (if she's even allowed to be at any appointments--if my aunt will let her be there) that she will be alone after the surgery.

 

Maybe she'd let one of us stay in her house with her, if she doesn't want to stay in our houses.

Edited December 9, 2015 by Garga

[Anne]

If the patient is unlikely to allow your mil to be at the doctor's office, it is completely possible to write a letter to the doctor to inform him of details he might not know.  

 

HIPPA prevents the doctor from communicating with you - but does NOT prevent you from communicating with the doctor!

 

Anne

[StephanieZ]

The surgery you are describing sounds a lot more complicated to care for post-discharge than a mastectomy.

 

Holy crap. The blue replies within my quoted post make me think you are a super hero.

 

I take to my bed for a day after a root canal. 

 

LOL

 

I am a sissy. If someone cuts off any of my body parts, I surely expect at least a week of catering to and pampering. 

 

It sure is great to hear that it might not be so bad, though!

[Guest]

My mother had surgery on both breasts for cancer and NO WAY could she have gone home and been alone. No way in heck. She stayed with me for five days, and then went home where my father is, so not even totally alone after five days. She was taking some pain medication and, while she does not think she was affected by pain meds, I do. Her sleep was interrupted by dreams or "visions" - we interpret those events differently, but let's say her imagination was exceptionally vivid.

 

And I'm sorry your DH is not recovering quickly from surgery. I remember you talking about the surgery at the Meet up.

[Starr]

The more health issues one has in addition to what's being treated the more difficult post op will be. If she can't get up much, for long, now, it will be more difficult with pain and/ or medication. Will she have strength in her arm? Will she need assistance in the bathroom? Rehab isn't a bad option especially if family can visit. 

[dirty ethel rackham]

The more health issues one has in addition to what's being treated the more difficult post op will be. If she can't get up much, for long, now, it will be more difficult with pain and/ or medication. Will she have strength in her arm? Will she need assistance in the bathroom? Rehab isn't a bad option especially if family can visit. 

 

:iagree:  and with Stephanie, too.  We are not talking about someone who is managing well on her own before the surgery.  I think it is unconsiounable to send someone home without making sure that they have adequate home care.  Makes my blood boil to think about it.  Don't tell them that you will be there.  Even if you are there, if she has problems, your only option would be to take her in to the ER or call an ambulance.  My mom was never discharged without an assessment of self-care.  I was always there for discharge to make sure that the social worker was doing her job. 

[Laurie4b]

Holy crap. The blue replies within my quoted post make me think you are a super hero.

 

I take to my bed for a day after a root canal. 

 

LOL

 

I am a sissy. If someone cuts off any of my body parts, I surely expect at least a week of catering to and pampering. 

 

It sure is great to hear that it might not be so bad, though!

 

No, really not. And my surgeon was really clear that I was not to tolerate pain but take the )*$&$ meds because pain impedes healing. So I think I could have actually done without 1 or 2 of the meds, but the surgeon wanted zero pain, so I complied. 

 

I was not unusual in her practice to have had a pretty easy recovery. Note, though that I had a single mastectomy (which is what I think the OP's relative is having) not a double. With a double, both sides of the body/arms are affected. 

 

The biggest pain in the neck was the stupid drains. But they have garments that help with the logistics of those. 

[kbutton]

Stubborn plus MS means she won't speak up about her own needs, and her care/recovery could be more difficult mobility-wise. However, she might also have a huge pain tolerance after years of MS.

 

(My aunt has MS, is stubborn, and has wicked high pain tolerance--it has put her in a bad spot more than once because she won't advocate for herself, or she puts up with pain more than she should and ends up unable to move.)

[Rubix]

I am a homecare nurse and help with patients who have had this done. There may be a drain in place that needs sire care and emptying. We can come in to teach that, but generally are not there to do it multiple times per day, so she would have to learn to do it or have help. Pain and nausea are common, as are meds for these. Can't drive with the pain medications. Incision will need to be monitored for infection. Range of motion will be limited for awhile, basically pain with standing, stretching, lifting arms. There is usually numbness at the site for the first days which can just go away, or at be replaced by pain, all depending on how things heal. If she is having augmentation done, that will be another incision to have pain from.