Questions about post-surgery abilities

Hopeful82014

No way would the stacked combo machine be feasible - I hope your family's good at following instructions, Lilith! 

I don't know how you can stand to wait an extra week. Good luck!

knmtwins

What about get in and out of bed by yourself?  I'm still doing chemo, so surgery isn't until December 2nd.  Also, anything I can do before to prep the muscles?  I'm thinking being strapped down straight out for 5 hours will create an issue, and if I could prep for that, it might be helpful.

Iwannacookie

Knmtwins--getting in and out of bed isn't too bad. I had a hysterectomy a year ago and that was very difficult because I couldn't access my abdominal muscles.  In this case, the challenge is with your pectoral muscles.  But if you have reasonable strength in your abdomen you should be okay.  If not, you could prepare by doing some ab exercises.

Hopeful82014

Some women have suggested that wearing pajamas with a silky texture (at least for the lower half) is helpful as it allows you to slide out of bed more easily. I've not tested that theory but it makes sense to me.

knmtwins

So, it isn't that bad...  I've been told I'll need 'care' for the first few weeks, and someone to stay with me for 4-6 weeks.  That seems crazy.  So glad I found this post!  So, day 1 in the hospital.  If I need to go to the bathroom, will I be able to even if the nurse doesn't get there quickly enough to take me?  

Also, I wish I had a physical therapist friend, to ask what stretches or exercises I could do ahead of time.  I'm thinking having your arms strapped down for 5 hours, must create issues with the deltoid and latissimus dorsi muscles.  Just trying to not have 'everything' hurt. 

Iwannacookie

Everyone's recovery is different, but I think it was much easier than I had feared. I didn't need much help after the first few days. I mean, I could take care of all my basic needs, except for driving. You shouldn't have any problems getting to the bathroom in time after surgery. (My case was the opposite problem--I couldn't pee on my own for a few hours following surgery and had to be catheterized). As for stretches--I think you can find videos on Youtube. My surgeon never gave me any instructions, but as it turned out I was gradually able to stretch more and more until I was back to normal. I don't know if the tissue expanders made it worse.

Lilith08

I'm four and a half weeks post-op (BMX without reconstruction) and thought I'd report on what I found. This was my list of questions:

Milestones?
Wash own hair--it was difficult, but I did it 2 days post-op. If you have someone to help, let him/her! I bent my head down as much as possible and was able to get my hands up enough without raising my arms.

Shower on your own--again, did so 2 days post-op. Surgeon's instructions seem to vary widely on showering restrictions, however, and it may also be more difficult with TEs/other types of reconstruction. My BS allowed me to shower after 24 hours; the PS that I had consulted with said the same--they both wanted everything to be as clean as possible. The hospital nurse advised liquid antibacterial body wash; I had purchased bars of Dial antibacterial, so asked what's the difference. She said some doctors feel the liquid is even safer, because with the bar soap there can be bacteria left behind (on the bar). Also, no wash cloths for same reason, and use a fresh towel with every shower. The first shower was by far the most difficult, and very tiring, but by end of week 1 it was much easier.
The trickiest part of the showering, I found, was managing the drains. I'd read about using a lanyard around your neck and pinning the drains to it; I cut a length of ribbon and tied that around my neck, but then you're left with a wet ribbon, and the idea of bacteria hanging out in it. So, after that I used dental floss, as recommended by several people elsewhere. I doubled it up (had visions of a single strand cutting into my flesh, but that's probably not the case!), long enough to hang about 12-15 inches down, then pinned the drains to it. Could easily replace for each shower if you're worried about lingering bacteria, but I didn't feel the need. Once your drains are out, showers are so much simpler!

Open medicine bottles/water bottles etc --maybe by day 4 or so? With TEs, I imagine it's longer because of the pectoral muscles.

Cook/prepare some sort of meal--I could make my own sandwich or toast by day 2; I rarely cook, to be honest, but could probably have managed something simple within a week. The key would be having everything you need at a level that you can reach and not having to open vacuum-sealed bottles.

Pick up gallon of water/half gallon/kettle for tea--doctors' orders vary; my BS said a gallon jug weighs 8 pounds and that was my weight limit; I've seen others say their limit was 5 lbs. Either way, lift carefully--holding a full gallon bottle with one hand at arm's length is a lot more strain than holding it close to your body with two hands.

Do laundry (?!)--I did my first laundry at 3.5 weeks, and that's with a stacked system. Might have been able to manage just before the 3-week mark, but am fortunate to have had lots of help nearby.

Drive--short distances? more than 15 miles?--my doctor said that if I could wait 4 weeks, that would be best, but I started at 3 weeks and had no issues. The main things are that you should not be taking any narcotic pain killers and that you have sufficient range of motion in your arms.

Lift a laptop computer--being careful to hold it close to me and with both hands, within a few days.

Lilith08

Questions from original poster, iwannacookie:

Shave pits and legs (the entire leg--front and back, top to bottom)?-- I shaved my legs at just after a week post-op, and that was mainly because I had my drains out already; much sooner than a week, it probably also would have been very tiring to add shaving to the shower routine. Armpits: when I mentioned it to my visiting nurse at 1 week post-op, she told me not to shave just yet, in order to avoid any possible infection; she had a patient once who got an infection through a small nick from shaving, and as the armpits are so close to the surgery site, it's dangerous. I waited until 3.5 weeks, but then I'm fortunate to have very fine hair...

Wipe yourself properly?--did not have a problem, even immediately post-op in the hospital. This could vary with body shape/size, and whether you have TEs/ANLD/more complex situations.

Clean yourself--doc told me no showers for 6 weeks. I realize I won't be able to wash my hair by myself, but what about the rest of me? Will I be able to give myself a sponge bath, or will my husband have to do it (which I'm sure he'll be more than happy to do)----I answered this one in my post above, and doctor's orders will vary (but I personally cannot imagine not having a shower for 6 weeks!). I wonder if this doctor meant no bathing, as in submerged in a tub. I was told no tub baths or swimming pools for 6 weeks.

Have sex?--very single at this time, so can't help I don't know that I'd want to while drains are still in, but I imagine that as long as you feel like it, there's no reason not to. May be a question for the doctors, especially if you're having abdominal involvement for a flap surgery.

ThinkingPositive

Just wondering if anyone is experiencing any swelling around the side of where the mastectomy was. My chest still feels somewhat swollen and a little hard..guess thats due to the tissue expander... but just wondering if anyone has any swelling that still exists around the side area under the arm. Had mastectomy of left breast, SNB and ALND 4 weeks ago.. My arm is fine and I can move it..just can't lift completely above my head yet.

Lilith08

ThinkingPositive--my surgery was just two days before yours. Until about a week ago, I still had quite a bit of puffiness around the side of my chest/ribs, and was beginning to worry about it. It has since diminished, but bear in mind that you also have the TE and the ALND probably did a number on your entire under-arm area. Hopefully someone else will have a more conclusive answer than I do, but it doesn't seem unreasonable to me that you'd still have some issues.
Hope it resolves soon!

Kicks

See a LymphEdema Therapist.  It is possible to develope truncal LE without hand/arm involvement.  Not just some PT who claims to 'know everything about LE" - but someone with education.  Nobody knows 'everything'.  My LET guy is an OT (Occupational Therapist).   Unfortunately, many Drs are not well educated/knowledgeable about LE.

At least an intial 'baseline' appt with an LET is appropriate for all to have.  To  be evaluated, gain knowledge, techniques, etc.  The sooner it is DXd the easier to manage/control.

bam123

Hi knmtwins!

I had a BMX three weeks ago today (11/3) with an overnight stay at the hospital.  From my experience:

o  Getting in/out of bed the first couple days was a little challenging but my ab muscles built up very quickly and it quickly became a non-issue.

o  I live alone and was told I would need someone staying with me for 1-2 weeks, which concerned me a lot. I have a sister who came out to stay with me a few days.  Then I had friends who dropped by daily to help me out and who cooked dinner for me. Breakfast and lunch I was able to do.

o  In the hospital that first night, I had a nurse follow me into the bathroom, mostly to make sure I didn't lose my balance (I was a little light-headed) and to help me navigate with the IV rolling pole (or whatever they're called). Once home, I had no issues with the bathroom.

 Now, 3 weeks past the surgery, I can pretty much do things on my own, with the following exceptions: 1) I still can't shower (until the drains come out). 2) Lifting anything >10 lbs is extremely difficult and I do feel it if I overdo. 3) I still get extremely fatigued if I do too many activities.  This past weekend, I went out and ran a couple errands (mostly because I was going crazy at home). When I got home, I was extremely sore and exhausted. I ended up taking a 2 hour nap. 

Bottom line, don't push too hard and listen to your body.  I have my moments of getting really down and frustrated that I can't yet do everything I used to be able to do, but I'm realizing it's all part of the recovery process and that I need to slow down and let myself heal.

Good luck to you!  

tracy77

Need some advice; 13 yrs out from R side mastectomy (abdominal tram flap) ; 2.5 years from lumpectomy (mastectomy breast) and diep flap from right side from radiation shrinking original mastectomy and alot of scar tissue (ouch).   Had surgery last year Nov 2013; still having issues and developing more each month.   My breast appears to be shifting to under my arm, pain when I turn to the right or reach the wrong way-entire side "locks up" in muscle spasm and now I am getting sharp pains on lower right back (below incision) Had it checked for infection and they said no, waiting to see my primary PS and the wait feels like forever.       I am beyond frustrated with bc and just want my life back; unfotunately it feels like it will not return to normal and disability has turned me down and says I can do some type of work but after having an iron infusion a month ago and continuing issues with the reconstruction I am  just frustrated and wondered if anyone else has problems with their reconstruction;deip repairs.    I am doing exercises and probably going to be doing physical therapy or possibly more surgery to "correctly place the breast" but I am afraid it will just re shift again.     

Lilith08

tracy77, I'm sorry about your ongoing issues--a year seems a long time, but I know the DIEP procedure is massive. I did a couple of searches to see if there's a discussion thread that might help. This one is for all DIEP patients from 2014. It seems odd to me that an autologous reconstruction would shift, but I don't have any experience with it--hope you can find some answers soon!
Be well.
DIEP 2014

Chloesmom

Planning BMX later this month. I work with babies and will have to take a leave of absence as I won't be able to lift them. I'm trying to figure out how soon I might be able to go back to a modified schedule.

The issue is do they get a sub for 3 weeks and I got back light duty, or do I really need to take 6 weeks or more off?

Instead of lifting the babies have someone place the kiddo in my lap to feed them. I have to set things up for work and would you believe am more stressed about this than surgery. Hubby says we are ok financially so that isn't a concern for the next few months.

I've had 16 surgeries in my life so am not as frightened as most would be about it. Just want to find out if the nodes are ok or not.

tracy77

thank you!

glennie19

Chloesmom:  If I could make a suggestion,  i would recommend that you take off as long as you need, and not worry about coming back on light duty.  What happens if someone hands you a baby, and they slip, and you must grab the baby?  Or baby squirms in your lap and you need to readjust, thus lifting?  It will be difficult to raise your arms for a while, much less lifting a possibly squirming baby.  If you can,, ask for 6 weeks,, then if you feel better, you could go back earlier.  At least with my job,, it was easier to go back earlier,, than it was to ask for more time off in the middle of it all.  **we thought you would be back on the 15th and we made the schedule that way. What do you mean, you need more time off?  I have to remake the schedule now. **

Chloesmom

wonderful advice!

Lilith08

Chloesmom, I'd absolutely agree with Glennie! Better to ask for more time up front; if you need it, then you're set. And you can't know up front how things will go. I went back to a desk job at 4 weeks, but I'm not sure I'd have wanted to be handling babies. You'll also want to be sure you have enough range of motion in your arms for just those unexpected situations that Glennie mentioned.

motherofmany

Thank you for this information....is there anyone out there having pain like this 2 weeks post tram sparing DMX, I keep having lock up pains and spasms in both chest and it hurts so bad I feel like I made a horrible mistake with my decision to have flap reconstruction. Is this just part of the healing or have I set myself up for a horrible future...I am courious if you always had this pain like me. Thank you again.

knmtwins

Motherofmany - I didn't have flap, had skin sparing with expanders, but it hurt like the Dickens. Was on Vallium, Percocet and Flexeril for about 20 days, then stopped the Vallium, and on day 30 had to stop everything, as I had to start driving my kids again, but if I didn't, I think I would have stayed on for another week. This stuff HURTS, but... I'd let your PS know, just in case.

motherofmany

Thank you for replying... I am beginning to get relief now that I am at 3 weeks post surgery . However I still have a lot of lock up muscle pain... Your right... It all hurts. And now I have to begin chemo... I pray we all stay strong.