TEs. A Beginner's Primer
Comments
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iwanna, I am so tired of the back sleeping and sleeping propped up. I was a belly sleeper so this is frustrating. I had to be on my side yesterday for my echocardiogram and it hurt so I don't think in be trying to sleep that way anytime soon.
I heartbreakingly just cancelled my family's vacation in December. We can't have the additional expense right now so I had to cancel while everything could still be refunded. My insurance is horrible. We've already paid $6k out of pocket and my treatment hasn't even started. It's all one big flipping nightmare.
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Iwannacookie I am 4 1/2 weeks post op BMX. One afternoon last week I was going to lay down on my bed. As I was "getting there" I was kind of 1/2 on my side and thought "this isn't too bad." I quick used my feet to get some pillows within reach to keep me in that position. I slept there, sound as a rock, for three hours. Its the longest I've slept at one time since surgery. But that was it. I haven't been able to find that magical position again. Half on my side is as close as I got, but it was heavenly.
As for a sports bra, I haven't worn one yet. At all.
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Ilovecoasters--that's terrible about your insurance coverage (or lack thereof). Talk about adding insult to injury. I hope when all of this is over for you, that you'll be able to take a good relaxing vacation. You needn't go far or spend lots of money.
What part of Florida are you in? I live in northern Califronia but my father in law lived in Bradenton. I loved going to visit him and being able to go to the beaches in Sarasota. It was very restorative.
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Noonrider--yeah, the closest to sleeping on my side has been being propped up against the back of the couch. Sometimes I have to leave the coziness of sleeping in the bed with my husband and cat, to go downstairs and sleep on the couch. But it really isn't quite the same.
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Funcia,
No worries about the drains. Truly, the worst part is thinking about what to expect rather than actually dealing with them. They didn't bother me at all the first 2 weeks, and that is about the time most women have them out. I had to keep them 4 weeks so the the exit port was slightly sore, but totally not a big deal. It gets a little old emptying/measuring output, but it doesn't hurt or anything. I bought a cami designed for mastectomy patients- opens vertically down the middle with velco fastening to avoid raising your arms over your head, and pockets sewn inside to hold the bulbs for the drains. Worked great, but not an absolute necceisty. On previous surgeries I simply fastened the drains with a safety pin to a shirt. When it was time for the drains to be pulled out I literally didn't feel a thing due to the numbness present from the double mastectomy. In a previous surgery I had 4 drains, with 2 located near the groin and 2 up further on the ribcage- the ribcage wasn't any issue (and I had feeling back them) and the groin sucked a bit, but was over rapidly- and those were in several weeks longer than the normal, which is what caused the soreness. No worries overall!
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iwannacookie - the closest I got to side sleeping with expanders - and mine were HUUUUUGE
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I made sure to hug a big fat pillow between my arms, so that they didn't put any pressure on the TEs.
I also used my "body pillow" quite frequently. That's one of those long ones... about five feet long. That was good to hug in front of me, while having a different pillow behind my back.
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We are in Volusia on the east coast.
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I made the 1000 mile car trip with no problems. Still hating the TEs. Like Iwannacookie, I'm sick of back sleeping too and wondering if side sleeping will hurt anything. It's not like I can sleep on my side anyway but I do manage to get off my back a little, but I imagine busting a TE loose. Is this possible? PS gave me Ambien. I take it after 9pm and I'm able to sleep until around 4 but that's it. But it's better than before. I just cannot see how I'm gonna deal with these for another 4+ months. But then I'm ashamed of myself for complaining so much when some of you ladies have been through so much.
Blessings
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www2b,. It's not a contest! No one wins a prize for the most hurt! LOL. We don't judge your hurt and you don't judge anyone else's. It just is. So complain all you want. At least on here we all understand! I know sometimes it gets repetitive to say we all are different but it is so true. No one really knows how they will deal with things until they do. So we hope everyone has an easy time and comfort and listen if they're not that lucky.
I'm a side sleeper. I didn't after sx. I still sleep in my recliner because sometimes my knees don't want to go upstairs. But the pain my bones feel when I sleep in a bed is tremendous. For at least the first 3 days. I usually can't move well. And that includes with a cane. So not only do I face the climb, but the pain. I have to remember to bring up the hydrocodone for those couple of days. And I actually have to sleep on my hack for those 3 days so it doesn't hurt more. Then if I can keep it up I finally get on my side for a bit every night.
Much love to all.
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i wannacookie..i've been able to sleep on my side some nights...I had my TE put in July 22nd and only had one fill so far (next one is scheduled for next week)...only reason I've stretched them out so far right now is because my car won't make the 3 hr trip to the PS (they are the only ones in the state that take my insurance to do the reconstruction...lucky for me they are also the best...I finally got my judgment for my disability so once that gets processed I am hoping to get a more reliable car and start doing the fills every week or every other week to speed things up...I would like to be able to do the exchange after the beginning of the year ( I don't want to go thru surgery with the holidays coming up) ...
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Cammee--how many ccs do you have so far? I imagine the fact that you're taking it so slowly with the fills is probably to your advantage physically. I agree about waiting until after the holidays for the exchange surgery. My PS said there's nothing wrong with leaving in the TEs; i.e they're perfectly safe to keep in, but the discomfort is what necessitates them coming out.
I had my supposed last fill, and would be having my exchange in December or January, but now I'm holding out because my PS told me that the manufacturer of my implants is supposed to be coming out with a new line of implants that would allow me to go a little bigger (in projection). I honestly didn't think I cared about the size of my breasts. Originally I told my PS I wanted to be a small B. Ha! After the reception I've had from my lusty husband, I find myself excited about the prospect of going bigger. What the hell! The rest of my body is getting older--may as well get something fun out of this. The price I pay is having to sleep for another few months on my back. I am ever thankful for the rotation of Benedryl, Flexiril, and Ativan, that allows me at least a few solid hours of sleep at night.
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Check w/your dr, but I think do whats comfortable. Slowly move to your side a bit at a time, youll know when to stop. Clutch a pillow to your chest and see how you can get comfortable. I cant see how anything inside the te could be damaged.
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cookie...honestly I'm not sure how much I've got in me at this point..I know I asked last time and he said he'd hafta check and then he forgot to tell me and I forgot to ask again before leaving (in my chemo brain defense, I also had my 5 yr old with me and was a bit scatterbrained..I'm definately going to make sure I get a number when I go on the 22nd for the 2nd one) I realize I'm one of the lucky ones on here. I didn't have to do drains and I didn't have radiation...yes I was down for about 3 weeks after the surgery to put the TE in, and then I walked around with my right hand (the side the TE was placed in) on top of my head because for some reason it seemed to take the pain away when I was upright ...I realize I probably looked funny but hey, it stopped the pain for me to be able to walk around my house...don't get me wrong I still have some days here and there where I wake up and feel a burning sensation, kinda like how I felt after surgery, but it usually goes away once I get up and start moving around...for the most part, aside from the surgery, it hasn't been as bad as I thought it would be. I decided that since I didn't start with much to begin with, and after all I've gone thru with chemo and all, and since insurance covers my reconstruction..I'm getting me some boobs this time around...I deserve them..as we all do...haha....even tho I only lost one, they still do both because they have to make them even and they allow me to pick the size so hey, why not....
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Iwannacookie - I've been sleeping on my side for the past 2 weeks. I asked my PS if there were any problems with that and he said no, as long as it's comfortable. I'm only filled to 260cc on each side right now and have 4 fingers width between them. He will bring them closer at exchange. He is planning to take me up to 600 very slowly. He told me to plan on having the TEs in for a year.
There's no way I can sleep on my back that long!!! Who knows how I'll feel about side sleeping after a few more fills. Now, I find side sleeping on my right is waaaay more comfortable than my left, but the edge of the TE on the left protrudes more and hurts more, especially when I lay on that side. Of course my left side is the one I want to sleep on. There is some discomfort when I get up as everything shifts back into place. Try using a pillow behind you, to help support your back. Laying at 45 degrees might be comfortable enough. That's how I started.0 -
Sunflowercat:
Yikes, why does your PS want you to have the TE's for so long? I may have missed your earlier posts - did you get rads? I only have one and it is so uncomfortable that I would hate to have to endure it that long!
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I've been scheduled for surgery for this Wed. 10/15. I'm having a pmx on left side and TE placement on both sides. I'm starting to worry and stress about the recovery. I'm excited to get started on this part of the journey, but scared of the million things that can go wrong. Not to mention that the thought of losing my left breast is depressing but it's a choice I've made and I feel good about, just still depressed about it.
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Nancybel, will be sending thoughts and hugs your way for tomorrow's surgery. During my BMX surgery my PS filled my TE's with 200cc - so I was never completely flat. Then it was about 11 days until my first fill (when 2 drains came out). You will do great!
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nancybell, so feeling that . Understandable. It's a hard choice to make but you know you did the right thing for you. Hugs. Hope sx goes well and fast healing.
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nancy bel
I did what you're doing. Mastectomy on left due to bc and one year later a PMX on rt with TEs on both. This Friday I'm doing my exchange. So happy to be at the end of this road !!!! You'll do great!!!
If you have any questions and want to pm me that's ok
Babs
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I am 13 days out from the second mastectomy and double TE installation. BS says everything looks good. Plus - no more cancer, no chemo, no rads. Feeling very fortunate to have had that outcome with both mastectomies this year!!! Would not be so if I had not been having yearly mammograms. Small and early! Still have a drain on each side - yuck. As soon as they get under 30/day each, I can run in to my PS office and get them out. I do have an appt to see her on the 21st, and probably will plan fills from there.
Side sleeping has been heaven!!! Was using hydrocodone at night with Ambien to help with sleeping.
My biggest issue is the damn drains. TEs not terribly uncomfortable at this point. I might be singing a different tune with the fills and the exchanges.
I am so sorry that so many of you are having difficulties on this BC journey. We are indeed all different. Hoping the upcoming months provide positive progress and that there are solutions for some relief. It is a good thing that these threads are here so we can learn from and support each other.
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drains are a pain! LOL Hope they come out fast..
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My TEs were filled some during the BMX sx (rt TE was replaced and filled after I got cellulitis and had a power wash sx); had my first fill while I was awake today
. Oh my-lanta! Hope the hydrocodone kicks in soon! I think I'm going to sleep in the recliner. Getting out of the car was very uncomfortable; I can't imagine getting out of the bed in the AM. I forgot to ask how much he out in because I was more concerned w/ asking questions about exchange (I need to set up my flex acct for nextg year and need to decide how much to out in it). I will call back in a day or so and ask then to look it up for me. Originally he had said maybe just a couple of 100 cc fills. I was not very big before (wore a 40B bra that was not quite filled out in the cup), and I only want to be a little bit bigger this time.PS says we should be able to do the exchange before the end of the year. That will be good on my pocketbook since I've hit my max on insurance this year through Dec. He said the only thing I should have to do next year would be tattoos, but right now I don't think I want to do them.
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I just got home from the RO. I am at a breaking point. I will need 33 treatments once chemo is over. They want the expanders emptied. I am so distraught I feel like giving up, period.
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ask RO about internal rads? Takes only one or two weeks, but they insert it in you. Dont give up-- once youre done with rads they will have a better idea of size, how your skin is, etc..and your ps can make them purtier. Prettier. and pertier.
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Aviva
My RO already said I am not a candidate for internal. I'm just trying to visualize the mess I will be with the stretched skin hanging just on one side. My body image is shot to hell right now. Question for those of you on AC and Taxol. Are you gaining weight? I'm so worried about weight gain on top of everything else. I'm only 5' 1" and already fluffier than I should be.
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thank you all for your wonderful thoughts and prayers. I was home same day and in some pretty good pain. Meds helped. Still sore/pain and yes the drains are the worst of it. I don't like the feeling of helplessness but getting used to it. Ugh hate these drains
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Nancy, - I hope that you are feeling at least a bit better now! The drains are so annoying, - but the pain meds do help!! BUT, - be sure that you dont get constipated from them! I didnt realized the how much the meds were affecting me, and I had a problem.
Take Miralax!! 
I am scheduled for switch to implants on 11//20, and will surely remember to have the Miralax on hand if I need the pain meds!
Take it easy, - accept all the help that you need right now!
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Oh, nancybel..... I know the drains are annoying, but TRUST ME - you do NOT want all that fluid backed up into your tissues. You want the swelling to go down as quickly as possible, so the healing process can begin.
And whatever you see coming out the drain tubes would be backing up somewhere, creating a whole new set of more serious problems for you.
Your surgery was October 15th? Shouldn't be too much longer until they are removed....
Hang in there....
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Flannery - he wants to take it slow for best results and so we don't put too much pressure on my purse string closures. I didn't have a lot of skin to work with in the first place and a seroma nearly compromised the closure on my Right side. I was 8 weeks post sx before the scab on my right side fell off and the skin is thin there. Hoping that isn't a problem. I got 200cc at sx and 60cc at my first fill (6 weeks post sx). I had another fill last week and told him that I just don't think I can do the year, I'll end up quitting before we reach the desired size. He put 110ccs in each side at that appointment and now I look pretty normal in my clothes! I don't think I'll do that much again though. I've been hurting for days and it affects my work outs/sleep too much, but hey...I look "normal" and that goes a long way in keeping my mental status on the right track.
nancybel- those drains are annoying, but blessings is right...you have to get that fluid out, because if it builds up it can be very painful. I hope you're feeling better now and if you're lucky the drains will be removed this week.
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Thank you. Yes I'm feeling much better. Off the pain meds and yes the constipation was not fun. It's under control now. Hopefully theses drains come out soon but I know you're all right and they are a necessity but they still suck lol
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