August 2011 Surgery Group
Comments
-
Hi to all,
I just read through your posts, and I am sorry for all you are going through! The pain can be bad, but it does subside as you heal. Take your meds, eat well, and get as much sleep as you can; I am sending healing vibes your way! I am also hoping you can give me some advice as I have surgery scheduled for Sep 14. I am not sure there is a forum for that yet, but I really want to hear from you since you are all going through it now.
My story: I had a lumpectomy for a 1.5 cm tumer in December; my surgeon said "probably stage 1." Unfortunately, pathology revealed 3 positive nodes. I finished chemo in March, had a mx w/ TE on left side in April, and then had rads over the summer. Now it's time for the other side + diep reconstruction to both sides. I am scared!
Recovery from the first mx was very painful --I curse you TE and Alloderm!-- but at least the pain was confined to my left side (2 drains), and I could sleep in bed, on my right side if I took my pain meds and had at least 3 pillows around me.
To those of you that just had a bmx and/or bilat reconstructive surgery, my question is:
how do you sleep? Do you sleep? How many of you are sleeping in chairs/recliners vs. beds? (I am wondering if I should invest in a recliner) How do you get up/move? How about getting out of bed/chair to go to bathroom? How do you manage? Please share your suggestions if you have any.
Kathe
0 -
Hi Kathe, I am two days out from my BMX. I am sleeping in my bed with a wedge pillow to prop me up some to make it easier to get in and out. I don't usually have trouble getting up from a seated position as long as I remember not to use my arms and just use my legs. I do have someone around to help if I need it, but I have been really surprised. I didn't have immediate reconstruction so I have no idea how that impacts it. There are some DIEP threads the might help more with the specific issue. Sorry that your journey has been so long. I wish you the best!
0 -
Hi everyone. I'm just sending you guys some love. It's so strange to see such different experiences...everybody seems to have to deal with something different, but then I guess that's what makes us all unique.
Eema: I'm glad you're getting in there tomorrow before the weekend! Lillylady, I think I'd want to get in before the weekend too if I was you.
Scilla: You're so right to be gentle with yourself. I SO plan to SLEEEEEEEEP.
Blondelawyer: Sorry, I have no clue about drainage amounts (YET!)..anyone else know??
Lots of love to all
0 -
KatheW,
I had my surgery on Monday, and we bought a recliner specially for it. I did sleep it in my first 2 nights home from the hospital with heart pillows (little pillows that fit under my arms that someone from church made for me) under each arm. As long as I took my pain meds every 4 hours and had some help getting out of the chair, it worked really well for me. In fact I didn't feel any pain until I moved to get up. I am planning on sleeping in my own bed tonight! Last night (3rd night after surgery) was the worst for me, but once my sister-in-law (PA, used to work at pain management clinic) told me I could take ibuprofen with my vicodin, it was much better. Today, I have a much much better range of motion and the pain is mostly just an ache (as long as I take my meds) and of coure the compression bra and drains are a big pain in the butt. All in all I am thankful to feel so well today and praying you all will too.
Blondelawyer, glad to hear it has not been as bad as you expected. I really felt for you when I read your post-surgery post since I have been diagnosed with IBC (although they feel that that it is not IBC but there is always that possibility) so I also had a lot of skin taken. It is amazing what they can do though isn't it? I'm so grateful for surgical glue and that the days of having stitches removed are over!
0 -
I talked to a friend and am pretty sure that my drainage amounts of normal. I just worry for no reason
0 -
Blondelawyer,
Good to hear you are sleeping and that just the wedge is comfortable! I see you posted about drain amounts. Did your surgeon or the discharge nurse give you guidelines about the amounts/times? Is the total amount/day decreasing; is the fluid getting clearer? I am sure that everyone's recovery experience is unique, but when I had my lumpectomy, I do remember that it was 12 days before the drainage was down to 20cc/day. At that point the surgeon removed the drain. When I had my mastectomy, one drain didn't work well and was removed after 4 days. The other drain was effective and drained lots of fluid, around 100ccs/day initially. I think it was in for around 12 days, too. Hope that helps. Take care of yourself and don't over do it physically; that can increase drainage amounts (and healing time). Kathe
0 -
abatellik,
Sorry for your pain, but glad to hear you got on top of it with the Vicodin+Ibuprofen. I don't really like to take pain meds, but I took A LOT of them after my mastectomy. You say you only spent 2 nights in the recliner? And you are looking forward to sleeping in your bed? So maybe a recliner isn't so great after all?
0 -
I usually spend a lot of time laying on the couch because of my bad back, got lots of pillows fixed just right, and so that's where I slept for several days. Husband took a little movie of me sleeping on that couch, propped up, snoring away, and you could see my flat chest and then where the drains were pinned to my T-shirt just below that. I looked SO tired in the face, and of course bald! Not exactly cover girl look.
My drain output was similar to KATHE, I emptied the bulbs out two or three times a day, combined two drains into one little measurement cup and it filled it up for maybe two or three days. Then it gradually went down, up a little, down more, etc. I was scheduled one week from surgery to get them out, and one drain had stayed consistently low, the other one was right at the cut-off amount daily total for three days, and the morning to get them out I emptied the right amount, and dang if the bulb thing didn't suck in another same amount! So, I just counted it as that day's amount and let them pull the drains. I figured my body would absorb the rest. I don't recommend this for anyone else, but I just could not STAND them another moment.
My doc seemed to think the mark I had on my boob that I thought a part of cancer, that was left near the incision, was rather a bruise from surgery. So, I asked him if it WAS indeed a part of the cancer situation, would rads kill it, and he said yes, but that he had good margins to incision, and so it didn't have cancer in it. Still bugs me. Am seeing a melanoma specialist since I had that, too (three kinds of cancer in one boob), the margins should have been a little larger, altho surgeon and I agreed it was good enough. BUT if that melanoma guy thinks surgeon should go back in, WELLL, I'll get him to take off what I think is that skin marking, and maybe get RID of the two fatty places I have on either side of the scar.
My scar tapes were removed yesterday, that's when I saw doc, and cleaned up, it looks healed and thus fairly good, altho not exactly what I would call straight, and I think in general I look sort of like a one-armed man. But I had seen my Dad's breast cancer scar two years post-op when my stuff happened, and his quarter-inch white part blended nicely and did not look odd at all, so I know mine will be the same... in fact, they used glue on me (and I think dissolvable sutures), and he had regular stitches, so I think my scar will remain very thin.
They wanted to start rads, but I begged for another week, I'm just so weak and still feel some pain in my upper arm. Doc did not say anything about it being lymphedema and in fact said my scar and everything looked real good. The swelling HAS gone down. So, I did get some more pain meds, it hurts right now but am waiting a little longer to take the drugs. I think it partly hurts because I've pulled it too much since surgery 2-1/2 weeks ago. But in general the general discomfort is SO much better, I thought I'd go crazy that first 10 days or so. I may also have some spazed-up muscles in that arm, too, so will try to rub it out a few times a day for a couple days, see if it helps. Also am now taking a weekly vitamin/min with iron in it, to hopefully restore my strength. LOVE TO ALL SISTERS, GG
0 -
KatheW
There is a Sept thread. Feel free to join us - Mastectomy Sept 2011
0 -
eema-I called my nurse back yesterday and am going in today to get drained off. I don't have a lump-I look more like a waterbed. just pillowy all over-unfortunately on both sides. If I push in anywhere it ripples across my whole chest. Nurse also said don;t be surprised if I have to go back every 3-4 days now that this is started. Don;t worry about what you re posting-you will have time later to encourage and help others. Right now we are here to help you. We can compare notes later on our draining experiences.
Blondelawyer-you sound like you are doing great. Not surprised about your feelings about the way you look. As many pictures as i looked at beforehand it in no way measured up to my own look in the mirror. And you probably are getting that much in your cancer side because of only 1 drain. I thought if they took nodes that had 1 for nodes and 1 for the breast. I am thinking may have fudged a little too much and had mine pulled too early-hence the fluid build-up. I am glad those camisoles are working out for you. I did a little sewing beforehand and made some of my own-probably not as nice as the store bought ones.
Looks like lylu is the only one on for today. Wishing you healing thoughts and a smooth wake up
0 -
Dogeyed,
You sound like you are recovering; it does take a while to feel good. I started rads 4 weeks after surgery. I was still in pain, but radiologist said everything looked good and that I should start so I did. Strangely, I continued to recover while getting rads. Not saying it doesn't make you sore and tired, but the deep pain went away. Now, 4 weeks out from that I feel the tissue burning/tightening up again, just in time for some more surgery trauma. Ugh. THanks for your input on the sleeping arrangements. So I see that the feedback to me so far is 1 bed sleeper, 1 recliner sleeper, 1 couch sleeper.
To everyone,
Thanks for letting me post in your forum. Any feedback regarding sleeping/moving post-surgery is still much appreciated. I had trouble sleeping before BC, and am very worried about sleeping after this surgery. My doctors have emphasized how important sleep is to healing and have given me no less than 4 kinds of sleeping meds! I just don't want to get addicted.
Kathe
0 -
Eema, I hope you got some answers from your DR! Come back and update us.
My lump went pretty well yesterday. They used a mammo to put in a needle with a little wire at 8am, and although the mammo was a little painful, that whole experience was faster and much less painful than the core needle biopsy I had this Spring. Also, I took an Ativan before the procedure.
Then I had the lumpectomy at 11. It wasn't too bad sitting around with a wire because I had my partner in the day surgery unit with me until they came to take me for surgery. I explained to the anesthesiologist that I am claustrophobic and was not looking fwd to the face mask so they made sure to knock me out with the sedative - don't even remember having a mask on my face.
All I had was local with sedation so my recovery is a lot easier than if I'd had general anesthesia. The surgery was less than 2 hours, maybe only 90 min long. All i have is a sort of dull ache, taking a low does of oxycodone. I am going to see the DR in 6-9 days and should have the final path report by then.0 -
Hello all, I would have posted sooner, but I was having computer challenges. I could get on this site and read, but I couldn't log in or post. My computer would freeze up and say explorer not responding...Downloaded Microsoft updates...no luck...reinstalled Internet explorer and I was able to finally get back on. Yeah!
My surgery on Tuesday went very well. UMX with SNB, no recon. Good news on the nodes showed negative, but you know the drill waiting on pathology report for final word. I went home at noon on Wednesday. The home health care nurse stopped by yesterday, today and will continue to come by the next 3 days. The first night I slept propped up on a wedge and pillows. Last night I was able to lay down in bed. I slept well both nights. I have 2 drains. One drain fills more than the other, but I have a low overall volume yesterday it was just 55ml both drains combined. I have the camisole and find it useful. I did try the idea posted on here about running a piece of ribbon through the drain tabs and hanging it around my neck for showering...worked like a charm. My pain level is tolerable with the pain meds. I am doing my exercises, but I find that it is helpful to do them 30 minutes or so after taking pain meds. My mom is here helping me and it is very appreciated!
LulyH, best wishes to you today for your procedure. Sending you healing vibes and (hugs)!
0 -
HI All - Reporting in from my bil mx with nodes on the 16th. I went home with 3 drains. I am sleeping in a recliner with one of those neck pillows and its working great. I'm sleeping good. I feel great, am exercising my arms 3 times a day. I can say that the anticipation was the worst. Once its over, I hope you will feel like I did, like a huge burden was lifted off of you and am now on my road to recovery.
0 -
Yay! SO glad to hear you're all doing well!
0 -
Sounds like you guys are doing great. Yay for those doing their exercises. I go see a LE lady this week-wondering if she has others I might add.
I went to the BS today and they drained off 95cc off each side so I am flat again. It didn't hurt but they were running really behind so it kind of killed the day. She said it's best to drain it before it turns into pockets. I was just puffy all over. I have to go back Tuesday for them to check. They said don;t be surprised if it takes 3 to 4 visits before it stops. She said it happens and it is nothing I did. I maybe fudged on my drain amounts....my advice is stick it out with the dang things and maybe avoid the draining visits.
0 -
Hi girls,
Hope all of you who have had surgery already continue to heal and progress. Have any of you with BMX and TE's come home without a compression garment? My PS told me today that he doesn't want me to wear anything but gauze and loose fitting tops. Plus absolutely NO shower until all the drains come out and I may have 5!!! I did buy the wedge pillow but may have my DH bring the recliner up from the basement and put in our room. Sounds like you are all 50/50 right now for which works best.
I am still on for Monday so hope to post a few days after.
Take care,
Susan
0 -
I forgot one other question...my PS said no exercises until after the first week check-up. Is this guy just extra cautious or what? I don't want to be old stiff and frozen but he is worried about the skin edges holding.
0 -
I have 4 drains and have been sleeping in our super comfy recliner in the bedroom. I have no intention of trying to move to the bed until the drains are out. It's just too hard to avoid sleeping and pulling on them. I use a neck pillow, a firm pillow below my knees and a squishy pillow under each arm. I've been sleeping all through the night with no issues.
susanwmcg: I think all doctors are different but mine said I could do shoulder rolls and raises and also the breathing exercises before my check-up with him. I haven't been very consistent with those but I'm going to try to do more. I am allowed to shower but that does depend on the surgeon also. I did shower but it was not fun or relaxing because of the drains around my neck and trying not to take direct pressure on my chest from the water. I have two surgical bras that I wear with the drains pinned to them.
I stopped taking the narcotics today. I'm just taking ibuprofen but 800 mg. I'll take percocet at night. I am noticing some different pain/pressure in my left underarm and also some tingling. The interesting thing is that my cancer was on the right side and they didn't even check nodes on the left. I'm wondering if I over did it on that side or if it's just starting to get feeling back quicker than the side that had more work done.
Also, here is my blog for those who are interested. I'm wishing now I had gone with a more mainstream blog but now I'd have to figure out how to convert it over.
0 -
I'm hurting, I'm sore and I'm tired! It's one week and a day since my 2 surgeries and this has been an emotional week to say the least. Now that I'm all patched up, drains are out, etc., it's time to heal. My first MO appointment didn't go as I had imagined. I had to use the internet and MY OWN RESOURCES to figure out my true final path!
Seems my SNB was negative, but my BS still found positive axillary nodes with micromets. I suppose there was a good chance of this since my tumor was almost under my arm. My breast still looks nice (although black and blue), but MO just jumped into the chemo discussion saying pre-menopausal node positive women get chemo. I'm the one who had to bring up the Oncotype test to him! They do the test with pre-menopausal women who are both node neg. and women who are 1-3 node positive. For sure they do it with post-menopausal node positive women and he initially made it sound like it wasn't an important test for me. Heck, I even mentioned that perhaps I should have my RO order this test. After that, his nurse explained more about chemo and ordered the Oncotype test.
Anyway, the MO said I was Grade 2 and I have since found out I am Grade 1. Maybe he was thinking I was asking about stage, but who knows. THESE STATS ARE IMPORTANT when it comes to making decisions that can affect the rest of your life! Time for a 2nd opinion! It may be the same, but at least I'll be dealing with a different personality. I do know the various choices I have, but a fresher, more vibrant MO may be best for me. It's a relationship that will be for 5 years or so and I say that you should like the doctor and their office. Location is also important as no one wants to be driving all over the place if you don't have to.
On the other hand, my RO yesterday was great! She said to just hang in there until the Oncotype test comes back and we can talk again. She mentioned it was time to talk to my 9 year old daughter and she also answered a lot of my husband's questions. Hope everyone else is healing well and good luck to those with upcoming surgery.
0 -
Hi all. I am due to have a double masectomy with expenders on Aug31, so I was wondering if you would be so kind as to add me to the list. I finished all my chemo 3 weeks ago. I am now just doing herceptin. Will have to do it every 3 weeks until next April I am also estrogen pos. so after surgery I will be on hormone pill. I went thru 8 months of chemo, finally have hair slowly growing back. I had a 2 cen. tumor and now down to they say almost 0. I am glad for you ladies that already had surgery and doing well. I as well am nervous but just anxious to get it over with, I am a 34b am gonna go to a 34c after about 4 to 6 months in wva they will put silocones in, will post more after we meet with breast and plastic surgeons the 26. God bless you all.
0 -
i join this group today...got date of the 23rd from doctor today for bmx...pushed for it with the trip neg metaplastic diagnosis. Opted to move it up quick and wait til after for recon...guess I will just stuff my bra like I did when I was 10....hehehe...keeping it positive thru this process I believe will keep me strong. I want to laugh more than I cry
Mags
0 -
Kathe: Recliner was comfortable but not my bed. You know how that is. My hubby was nervous I would try to turn over in my sleep last night and hurt myself, so in addition to the pillows under my arms, I also had him put pillows next to my legs so I would be less likely to move. It worked and I slept pretty well... Guess you just have to go with whatever you think is best for you.
Tlaquepaque: I also was experiencing more pain on the non-node side than the node side (in fact, on Weds. my mom asked me if they removed the wrong side of lymph nodes!). I am definitely experiencing more on the formerly (!) cancerous side. I also can feel my nerves regenerating (It sometimes feels like drops of water running down my arm- has anyone else experienced this?). I think the initial pain on the other side was from the way they positioned me during surgery and also because those nerves weren't as affected by the surgery. Just a theory...
Mags20487: I agree with you about the laughter, and I posted this on my Facebook page tonight so I thought I would share in case it brightened anyone else's day.... my brother and sister-in-law were over tonight, and my brother got my heart-shaped pillows that I have been using under my arms and was wearing them like purses. Then he was saying this was like a sympathetic pregnancy and he was having arm pains due to his sympathetic mastectomy and if he didn't have the pillows, his breasts would explode. I have not laughed so hard in a LONG time!!!
0 -
Oops, I meant that the recliner was not my bed. My bed was very comfy!!
Also, Susan- I was under the impression the compression garment helps guard against the accumulation of fluid but having worn one for 5 days now, I say if you don't have to have one, God bless you! MY is so uncomfortable that I actually got goose bumps when I put my finger under the band to temporarily relieve the pressure. Praying mine really will come off on Monday- it kind of reminds me of when I was little and I would put my hair in a tight ponytail and by the end of the day, I just had to have it out!!! About the exercises, my PS said to wait a couple of days but I did stretch my arms out by walking my hands a little bit up the wall on the day after surgery. This was because my shoulders had collapsed in and my chest muscles were spasming. I don't know how the others feel about this, but in my case I know when I need to do some exercises and when I can't do anymore.
0 -
I am sleeping in a lounge chair (like the end of a sectional.) I was told I can't lay down for 2 weeks. My right side (non cancerous) feels great, recon looks great and is completely pain free. Have 1 drain there. My left side the cancerous side had 18 nodes removed 2 were cancer feels horrible. No feeling under my arm. numbness down arm to the elbow. Pain in arm and the outside of my breast is bad. I have to imagine it is the nodes making the difference. My nurse said I could have nerve damage from the 7 hour surgery. Also have 1 drain there. Its day 10 post-op and still have average of 100 cc per day drainage from each. I have been told that number needs to be less than 20cc/day before I get them out. The drains really dont bother me at all and definately not as bothresome as a thought. I have a kangaroo pouch I wear around my waist to hold the drains. It works beautifully. I didnt have anyone stay with me in the hospital at night and actually preferred it that way. I was allowed to shower after 24 hours with back to the water. Still taking pain meds and muscle relaxers without much relief. I have very basic exercises to do bend up arm at elbow, finger stretches and wrist bends but that is it. Was told not to raise my arms above my head (i had the alloderm all in one recon immediately after the bmx. Right side was clear!
0 -
SUSAN, I think you doc must have reason for you not to exercise, so just get your husband to rub out your back muscles for you, will do similar benefit as exercise.
KATHE, thanks for feedback on how long it takes to feel better after surgery. I never expected how hard it would be. After all, chemo blew my mind, didn't think anything else could be that troublesome.
ROCKYM, I hear your pain and annoyance, I was out of my mind for almost two weeks. Ummm, yes, location of chemo is big deal, mine was a 15-min backroad away, made it easier to go.
MAGS, as you can see, our avatars are similar. So, I LOVE YOUR AVATAR!!! Here is a link to mine, it's a little puppy dreaming and howling, really cute. http://www.americablog.com/2010/10/cutest-sleeping-puppy-ever.html
ALL who are posting their pre- and post-op situations, hooray for you all coming here and sharing. Keeps my spirits up, knowing others are also scrambling around and trying to make a go of it. GG
0 -
What do LE and MO stand for?
0 -
rangermom, so good to hear you're doing well!
0 -
Hi Ladies!
The eggs under my arms turned out to be the ports for my fills, if I ever get to that point!
My PS walked in to the room Friday and asked when I was going to the pain clinic. I told him they told me they have no openings till October. He got VERY upset and said, "I'm going to kick some pain clinic's ass! You'll get an appointment next week!"
I don't know what he did, but I have an appointment with the pain clinic on Monday! Yay for kicking the pain clinic into shape!
I went home with no compression garment, whomever asked, just a Gentle Touch surgical cami that is great.
Oh, my PS did offer to drain some of my implant fluid if I was in too much pain. I DID tell him I wanted rockin' boobs when I came out of surgery, so I am about a C, I'd guess. 450 ccs one one, 350 on the other--why the difference, I have no idea! However, even with the pain, I don't want him to deflate me. I was a 34 DD before surgery, so a C is small enough!
Hope you ladies have a pain free night!0 -
Hey ladies. I'm just checking in and am doing well. I am only taking tylenol for pain, except for a percocet at night just in case. Tonight I may try without. I still have quite a bit of stiffness in the cancer side, but I am doing my exercises.
How long should I have at home help? My FIL has been here since the surgery, but I suspect he is ready to get out of here
I can't walk the dog as she pulls and can't lift anything heavy or reach to high, but am otherwise getting along well. Thoughts? I see my MO tomorrow and the BS on Wednesday, so I'll definitely ask them. 0
