Questions from a basket case

Booberta

I admit it. My mastectomy is scheduled from Dec. 4 and I am indeed a basket case. The surgery itself doesn't scare me so much as the anesthesia. I'm a nurse and "know too much" about the things that can go wrong with anesthesia. Since this is something I have no control over, its the one thing that I have been focusing on.

It finally occured to me that while I have been stewing over this, I could be using the worry energy to do some planning for post-surgical care. What a concept huh? Focus on what I CAN control-who'd have thunk?

I have an excellent book "Your breast cancer treatment handbook". It was given to me by the breast cancer support person where I work. Its very helpful and well written. However, I would really, really appreciate input from those of you who have "been there done that" and have the not only the tee shirt but the prosthesis, surgery scars and fond memories to prove it.

My left breast and sentinal lymphnodes will be removed. I expect that I will have at least one drain. My surgeon says that I will stay at least overnight and longer if needed. Ok, got that. I'm told there's minimal pain (very good news) and some very fine meds to help with whatever pain there is.

I'm rambling, I know so I'll just start with the questions.

I did finally find some knit button up pj's. Bought three pair. Has anyone used the TLC post-op camisole with the insert for the prosthesis? To me they seem a little pricey at $45 each. Should I go ahead and buy some fiberfill prosthesis to wear home from the hospital? Did you wear a bra home from the hospital?

Homecare-How did you manage your dressing changes for the first week or two and what about the drains? What did you wear at home for the first few weeks? How did you sleep? I'm a flopper and move constantly from my left to right side. Did the pain/drains interfere with your sleeping?
Although I'm right handed, I've been noticing how much I use my left hand and arm. How much does the surgery interfere with your ability to perform self care and day to day chores? How about cloths, what did you find most comfortable to wear? How about keeping the surgical arm elevated, what was the best way for you to do that?

OK, I'll stop here. This post is getting way too long. I just need some practical advise and reassurance that I can do this. Intellectually, I realize that it is just a process to go through. Emotionally, its another story.

elizarose

First of all, I love your
First of all, I love your name!
Now, as I've said before, we are all different in our experiences with this so mine will probably not be like yours but I can tell you what I experienced.
I had a mastectomy of my right breast with all the nodes removed (23 for me). My surgery was outpatient so you're fortunate to be staying overnight. I would recommend the camisole because it helps a lot with the drain and it comes with the fiberfill "boobs". I didn't wear a bra home, I wore a zip up hoodie. I wore the camisole at home, if I got cold or had company I put on the zip up hoodie.
I slept but could not sleep on my right side, it is still painful to sleep on my right side (mastectomy was July 22). My arm felt heavy and my upper arm felt like it was bruised, although there was no visible bruising. I used a pillow to keep my arm elevated. My daughter is here so I have to run, if I left anything out...ask!
Beth

chenheart

Well, of course you can (
Well, of course you can ( and will!) do this!!! As an RN, think of how many patients have had adverse reactions to the anesthesia as compared with the MILLIONS who haven't! Would you suggest to anyone about to have surgery that they not have the life-saving procedure just in case they don't wake up? OMG~ of course you wouldn't, because it isn't so!

I am by no means dismissing your fears; be it rational or not, I had the very same fears! I had never had surgery before my lumpectomy in my entire 53 years of living, so yeah, I was scared witless! But, ya know, when I was given the first "happy drugs", the edge was immediately taken off, and by the time the anesthesiologist smiled at me, he could have sold me to the circus! I sooo wouldn't have cared~ and neither will you! And then, presto-bingo, you are in recovery, groggy and whooo hoo a cancer survivor! YEAH!!!!!!

I am a flopper and a side sleeper as well~ this was a physical impossibility for me; my surgery side was way too tender ( ok, sore!) and if I turned over in my sleep~BAM! I was awake instantly! This gradually got better and better, and one night I turned in my sleep and stayed there pain free! A milestone not to be taken lightly!

I had a home health-care RN come by for 2 days following surgery, and after that, my b/f "milked" the drains until they were removed about 2 weeks post surgery. I wore big t-shirts, and no bra for the longest time.

I will leave the rest for others to answer; I want to stress though, that if you are given the excercises to keep your muscles from freezing, by all means, keep on the schedule your Dr gives you! The stretches hurt like h.ell, but I hate to think about the atrophy had I not done the exercises.

Others will weigh in on the subject you brought up...I just want to send you hugs and cyber-courage!

C♥

LC815

Hints
I had a mastectomy with reconstruction, so my surgery was pretty involved. I was in the hospital for three days and came out with three drains. I wore a big, soft men's style button down shirt when I was home. I also rigged this elastic thing with velcro on the ends to wrap around my rib cage to pin the drains to. It worked so well, I should have marketed it! I used about 1"-1 1/2" elastic and put stick on velcro on the ends. That way I had something underneath my clothes on which to pin the drains. Otherwise, when I pinned them to my clothes, they got twisty.

I don't think I wore a bra home from the hospital. I did get some zip up "bra-vests" (my goofy word) at like Wal-Mart or somewhere like that (I'll do some digging to find out where exactly). They were easy to put on since they didn't have any complicated hooks or uncomfortable underwires.

Sleep? You're a flopper now, but your body will settle in to where it's comfortable. Pain meds are there for a reason. I know you're a nurse and probably don't want to take them, but do so! For some reason, I was kind of nauseated after the surgery, so the Ativan they gave me for that helped with sleep, too.

Hmmm. . . what else? I'll write again if I can think of anything.

Hang in there. You CAN do this.

Marlene_K

No camisole
I was one of the ones that went and purchased that camisole for $45 and I returned it. I thought it was very ugly!! It only comes in 'white'. Perhaps black or some other dark color would be more attractive, but you can see through the white and the padding is extremely obvious! I tried it on the night before I went for surgery and knew then that I wouldn't be wearing it. I had gone to a 2nd hand shop and bought some loose button up tops and I wore one of those home. The hospital provided me with a cotton prosthesis to wear in my bra which I did and have been ever since. I can't find one that I like. Granted, I am small so I guess it's easier to get away with. I went crazy on the button up tops as I didn't own any and was afraid it might be some time before I can lift my arm over my head, but by day 2 or 3 after surgery, I was able to get t-shirts on & off and mostly only because I think I was scared to lift... the drains do pull and I was intimidated by that. When I would go out, I would pin the drains either to the bottom of my bra or tuck them inside the top of my pants as I never wanted them to be visible by anyone.

I, too, had a mastectomy of my left breast and that was my favorite sleep position. I got used to sleeping with a pillow tucked in next to me. Whenever, I would flip over, I would haul the pillow to the other side and tuck it in to where it was comfortable. Once I got the drains removed, I was able to roll completely onto my left side, but would still, and still do, put the pillow there for comfort. Since I don't have a partner, my pillow is very doable!

I agree with Clenheart and if they give you exercises to do, do them faithfully. I think that aided tremendously in getting movement back quickly. I don't know if all feel this way, but I am still quite numb on that side... under my arm and into my chest area. It seems to be coming back little by little, but shaving my underarm was very strange to me. I don't have to do that now, as I don't have any hair there from the chemo. Woo hoo!

Also, don't rush to get the drains out. They are a pain and I hated them, but my surgeon told me I could get them out in a week. When I went, he didn't feel they were ready. I waited another week and although the drainage appeared to be what they thought it should be, I still had a minor problem with fluid build-up and for two days was in pain with a big pocket of fluid. On the 3rd day, it started to feel better and then went away. If I could've done that over again, and they would've allowed it (I'm not sure they do), but I would've waited until there was absolutely nothing draining before removing them.

I don't fair well with pain meds and I was concerned about that. Fortunately, I never needed anything more than Advil... if I even needed that, as I would take it as a preventative. 'Just in case' I got pain, I wanted to cut it off.

It's not nearly as bad as I imagined it and waking up after it's all done was quite a relief knowing the cancer was no longer inside of me!

Best wishes for a speedy recovery and please keep us posted!

Hugs ~ Mar

Booberta

LC815 said:

Hints
I had a mastectomy with reconstruction, so my surgery was pretty involved. I was in the hospital for three days and came out with three drains. I wore a big, soft men's style button down shirt when I was home. I also rigged this elastic thing with velcro on the ends to wrap around my rib cage to pin the drains to. It worked so well, I should have marketed it! I used about 1"-1 1/2" elastic and put stick on velcro on the ends. That way I had something underneath my clothes on which to pin the drains. Otherwise, when I pinned them to my clothes, they got twisty.

I don't think I wore a bra home from the hospital. I did get some zip up "bra-vests" (my goofy word) at like Wal-Mart or somewhere like that (I'll do some digging to find out where exactly). They were easy to put on since they didn't have any complicated hooks or uncomfortable underwires.

Sleep? You're a flopper now, but your body will settle in to where it's comfortable. Pain meds are there for a reason. I know you're a nurse and probably don't want to take them, but do so! For some reason, I was kind of nauseated after the surgery, so the Ativan they gave me for that helped with sleep, too.

Hmmm. . . what else? I'll write again if I can think of anything.

Hang in there. You CAN do this.

Big Thanks
Thanks so much! I will go ahead and get a camisole. Sounds like it will minimize some the initial hassle of dealing with drains and feeling comfy immediately post-op.

Chen-Thanks for your reminder that there are way more people who have no problems with anesthesia than who do.

All of the advise has been noted and much appreciated. More importantly, I appreciate the kindness and willingness to share and to help calm my fears.

elizarose

Marlene_K said:

No camisole
I was one of the ones that went and purchased that camisole for $45 and I returned it. I thought it was very ugly!! It only comes in 'white'. Perhaps black or some other dark color would be more attractive, but you can see through the white and the padding is extremely obvious! I tried it on the night before I went for surgery and knew then that I wouldn't be wearing it. I had gone to a 2nd hand shop and bought some loose button up tops and I wore one of those home. The hospital provided me with a cotton prosthesis to wear in my bra which I did and have been ever since. I can't find one that I like. Granted, I am small so I guess it's easier to get away with. I went crazy on the button up tops as I didn't own any and was afraid it might be some time before I can lift my arm over my head, but by day 2 or 3 after surgery, I was able to get t-shirts on & off and mostly only because I think I was scared to lift... the drains do pull and I was intimidated by that. When I would go out, I would pin the drains either to the bottom of my bra or tuck them inside the top of my pants as I never wanted them to be visible by anyone.

I, too, had a mastectomy of my left breast and that was my favorite sleep position. I got used to sleeping with a pillow tucked in next to me. Whenever, I would flip over, I would haul the pillow to the other side and tuck it in to where it was comfortable. Once I got the drains removed, I was able to roll completely onto my left side, but would still, and still do, put the pillow there for comfort. Since I don't have a partner, my pillow is very doable!

I agree with Clenheart and if they give you exercises to do, do them faithfully. I think that aided tremendously in getting movement back quickly. I don't know if all feel this way, but I am still quite numb on that side... under my arm and into my chest area. It seems to be coming back little by little, but shaving my underarm was very strange to me. I don't have to do that now, as I don't have any hair there from the chemo. Woo hoo!

Also, don't rush to get the drains out. They are a pain and I hated them, but my surgeon told me I could get them out in a week. When I went, he didn't feel they were ready. I waited another week and although the drainage appeared to be what they thought it should be, I still had a minor problem with fluid build-up and for two days was in pain with a big pocket of fluid. On the 3rd day, it started to feel better and then went away. If I could've done that over again, and they would've allowed it (I'm not sure they do), but I would've waited until there was absolutely nothing draining before removing them.

I don't fair well with pain meds and I was concerned about that. Fortunately, I never needed anything more than Advil... if I even needed that, as I would take it as a preventative. 'Just in case' I got pain, I wanted to cut it off.

It's not nearly as bad as I imagined it and waking up after it's all done was quite a relief knowing the cancer was no longer inside of me!

Best wishes for a speedy recovery and please keep us posted!

Hugs ~ Mar

The cancer center at my
The cancer center at my hospital gives every bc patient a camisole and I have 2. I don't know if either would fit you, but I would be willing to send you one if you'd like. The ones I have are not see through and they are very soft. Also, you can adjust the amount of padding so it matches your other breast. Let me know if you're interested.
Beth

helen e

elizarose said:

The cancer center at my
The cancer center at my hospital gives every bc patient a camisole and I have 2. I don't know if either would fit you, but I would be willing to send you one if you'd like. The ones I have are not see through and they are very soft. Also, you can adjust the amount of padding so it matches your other breast. Let me know if you're interested.
Beth

Body Pillow
I have a body pillow and used it to put behind my back so I could lean back but would not turn over when I had my lumpectomy. I was given a husband to use for my mastectomy from a friend who had a double mastectomy last year and said it helped her a lot. It is nice, my sister has one and I've laid on them before. In ase you don't know what a husband looks like - it has arms and is connected to a sit up pillow. That's the best I can describe it. You can goon google images and type in husband pillow and be able to see what they are. I don't have my mastectomy until 12/11 so I don't know how well it works. I think either one of these pillows will help you sleep after the mastectomy. Hope this helps.

Booberta

elizarose said:

The cancer center at my
The cancer center at my hospital gives every bc patient a camisole and I have 2. I don't know if either would fit you, but I would be willing to send you one if you'd like. The ones I have are not see through and they are very soft. Also, you can adjust the amount of padding so it matches your other breast. Let me know if you're interested.
Beth

Great advice
Thank you so much again for the tips. Marlene, I was thinking of using the camisole as an undergarment so the look doesn't matter so much, thanks so much for the tip. It helps so much to know that there are things that I can do ahead of time. I'll be visiting the local thrift store soon, thanks to your suggestions.

Beth- I appreciate the offer, if I can figure out how to pm you, I'd love to take you up on your offer.

Booberta

Booberta said:

Great advice
Thank you so much again for the tips. Marlene, I was thinking of using the camisole as an undergarment so the look doesn't matter so much, thanks so much for the tip. It helps so much to know that there are things that I can do ahead of time. I'll be visiting the local thrift store soon, thanks to your suggestions.

Beth- I appreciate the offer, if I can figure out how to pm you, I'd love to take you up on your offer.

Helen
What a great idea about the body pillow, it will come in handy. When you talked about the husband, I knew exactly what you were talking about, I had one several years ago and gave it away.

I'm sorry to hear that you have to have a second surgery, that just sucks the big hairy one. Let me know if there is anything I can do.

lovelylola

Before you order the TLC camisole
please read. If you can find a front closing sleep bra it might work better. The camisole does have the velcro pockets for the drains but a sports sock safety pinned to the sleep bra works as well. The problem for me with the camisole was that if closed with velcro in the front that wasn't too comfortable as it was too stiff. Just wanted to pass this on. Lola

carkris

lovelylola said:

Before you order the TLC camisole
please read. If you can find a front closing sleep bra it might work better. The camisole does have the velcro pockets for the drains but a sports sock safety pinned to the sleep bra works as well. The problem for me with the camisole was that if closed with velcro in the front that wasn't too comfortable as it was too stiff. Just wanted to pass this on. Lola

I had a previous mastectomy
I had a previous mastectomy with reconstruction then a yearlater had to have it removed. and left it that way with a prosthesis.this time i had arranged someone to help me with the other side because I opted for expander thinking i could get a smaller prosthesis and be more matchy. My remaining breast was large partly weight gain and partly that it recives the estorogen. anyway there was a mix up so the lady did not show. The breast center gave me a Jaqui from the Susan Komen foundation. It was on loan, it is like a dress jacket with pockets lining the bottom to hold the drains. It helped because I was not ready to be with nothing after being large for so long. and it covered me a little. I did get the camisole and wear them still but did not use the pockets for the drains so much. I too am a nurse. i managed my drains. stripping measuring etc... the dressing was a like an IV dressing with the slit and some paper tape arounfd the drains. The docs did not want me to change my chest dressing they did when it was time. cant remember how long though. Ask for extra bottles to empty drains. mine were in abit longer and it gets fibrionous sometimes. I got some from my nurse friends. I was not in too much pain. I noticed the first time was worse because the doc had expanded the expander this palstic surgeon did not. so I didnt get the tightness that Ithink valium helps. also extra tegaderm because one of my drains kept popping open. of course I alcoholed it but i did not want it to continue doing that. Anesthesis went well surgery was not that long. My surgeeon is pretty particular about her staff knowing that helped. anyways if I think of anything else I will write best wishes!!!!!!! you'll do fine!!!!

carkris

carkris said:

I had a previous mastectomy
I had a previous mastectomy with reconstruction then a yearlater had to have it removed. and left it that way with a prosthesis.this time i had arranged someone to help me with the other side because I opted for expander thinking i could get a smaller prosthesis and be more matchy. My remaining breast was large partly weight gain and partly that it recives the estorogen. anyway there was a mix up so the lady did not show. The breast center gave me a Jaqui from the Susan Komen foundation. It was on loan, it is like a dress jacket with pockets lining the bottom to hold the drains. It helped because I was not ready to be with nothing after being large for so long. and it covered me a little. I did get the camisole and wear them still but did not use the pockets for the drains so much. I too am a nurse. i managed my drains. stripping measuring etc... the dressing was a like an IV dressing with the slit and some paper tape arounfd the drains. The docs did not want me to change my chest dressing they did when it was time. cant remember how long though. Ask for extra bottles to empty drains. mine were in abit longer and it gets fibrionous sometimes. I got some from my nurse friends. I was not in too much pain. I noticed the first time was worse because the doc had expanded the expander this palstic surgeon did not. so I didnt get the tightness that Ithink valium helps. also extra tegaderm because one of my drains kept popping open. of course I alcoholed it but i did not want it to continue doing that. Anesthesis went well surgery was not that long. My surgeeon is pretty particular about her staff knowing that helped. anyways if I think of anything else I will write best wishes!!!!!!! you'll do fine!!!!

Jaqui
also the loan for the jaqui was for as long as I wanted. I used it for a bit and recently returned it to them dry cleaned. They do ask at your discretion you to send a not that they provide but only if you want to. It was a useful jacket and I really appreciated it.

carkris

carkris said:

Jaqui
also the loan for the jaqui was for as long as I wanted. I used it for a bit and recently returned it to them dry cleaned. They do ask at your discretion you to send a not that they provide but only if you want to. It was a useful jacket and I really appreciated it.

sorry again my camisole did
sorry again my camisole did not have velcro, and i pulled it on by stepping into it. also a small pillow to rest your arm on in bed. couch. and car. more maleable and portable than a bigger one. the body pillow sounds like a great idea.

ladybug22

Booberta said:

Big Thanks
Thanks so much! I will go ahead and get a camisole. Sounds like it will minimize some the initial hassle of dealing with drains and feeling comfy immediately post-op.

Chen-Thanks for your reminder that there are way more people who have no problems with anesthesia than who do.

All of the advise has been noted and much appreciated. More importantly, I appreciate the kindness and willingness to share and to help calm my fears.

camisole
the hospital sent a camisole home with me and i still use it under thing i think are to low
good luck.walking the wall with my hand was the hard part for me. i had 2 drains my sister help me for a week . i was in hostital for 23 hours hugs to you

Booberta

carkris said:

sorry again my camisole did
sorry again my camisole did not have velcro, and i pulled it on by stepping into it. also a small pillow to rest your arm on in bed. couch. and car. more maleable and portable than a bigger one. the body pillow sounds like a great idea.

Such great advice
Lola and cakris Thanks for the info and warm wishes. I'll check out other sites for the camisoles and also head to Walmart and look at some sports bras.

cakris, thats for the description of the drains, it helps me to visualize how I will manage them or it as the case may be. You have had quite a treck with bc. I hope you are healing well.

We have a bc nurse where I work and I will contact her tomorrow, maybe she can give me some leads.

Thanks again for all your advice and support.

Love and Peace