Mastectomy Sept 2011
Comments
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Awww, that's so sweet about what your hubs said, Dancetrancer. I am so blessed to have such an awesome spouse - his mettle was tested in '01 w/my first dx - a newlywed, no less. He is no less supportive and kind this time around. I feel so lucky, b/c it definitely doesn't always work like this!
Dancetrancer - I keep forgetting that you're in a hotel - how is that working out? I can't quite imagine going thru surgery and then being discharged to a hotel . . . is it one affiliated w/the hospital or something so that at least they "get it" that you're recovering?
Sarah
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How come you guys can't get your incisions wet? I was told (and encouraged) to take showers with no restrictions other than no baths or very hot temps. I have no sutures, staples or dressings other than the ones on my drains.
We washed my hair in the kitchen sink. I can do it myself in the shower now if I lean forard. I can even brush my hair! I am self conscious about the way my breasts look- everyone has seen them except hubby. I guess I am waiting until the incisions (battle scars) look a litte less scary.
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Sarah, the hotel is working out great. We have a small suite with a living area separate from the bedroom area. The room looks over the pool. The staff has been great. They know what is going on with me and totally respect our privacy. We put the "do not disturb" sign on the door most days, but have had them come in and clean a few times. The front desk asks DH about me often. I will be venturing out for breakfast this morning, but every other day they have given DH a big tray which he fills up and brings back for us. We have a microwave and refrig so DH went to Walmart for a few things for lunch and dinner. It's quite comfortable! The biggest thing I'm worried about it flying home tomorrow. I've been surprised at my level of fatigue and thought I would have more energy by now. I will definitely be requesting a wheelchair at the airport!
Groovy girls, all I know is I was told not to get it wet. I have staples in my breasts, my SNB incision looks like it was glued, and I think the drains have stitches. I did also have a lot of injection sites for the multiple fat grafts. I'm guessing they are just really cautious about infection? Also, I had NSM on the R, and it doesn't look too great right now - tip of the nipple is black:-( I'm sure pounding it with water wouldn't be a great idea right now. Doc says often the nipple will go black but then heal and be fine. However it is not uncommon for NSM to fail. I will deal with whatever. It won't be the end of the world if it fails, although I would not look forward to another surgery to deal with that.
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My company sends out a thought of the day and I thought this one is true to all of us.
Courage is being scared to death . . . and saddling up anyway.
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groovygirl - I was told the same thing with the steristrip. I could shower a day after surgery with no prob. I have been showering ever since.
Hope- If you get a chance to read this this morning I'm thinking about you and hoping all goes well and easy for you and the surgeon is blessed with clarity of mind and just everything works in your favor.
dancetrancer- glad things are good for you - and what a great idea- a hotel and maids without all the household hassles that come with everyday living. A surgerical vacation. Zounds!
The best item of care I recieved was a shower head that has a side attachment that reaches under and up to my armpit. My family can be very clever when they put their minds to it. It has made it easier to shower and control the water flow from my hair to my toes without too much effort or discomfort.I sometimes forget to count my blessing where all those in my life go out of their way to make my life easier. Thanks for reminding me SAO.
Hope everyone has a great day and fortune smiles on all of you.
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Hi Girls -
I cannot believe it is one week post -op - I feel like I have been in such a fog - medicating this stupid pain. Sleeping is the worst - but the pain meds have also been making me nauseous - so I am trying to balance. The back drains and scar are the most painful - the front doesn't hurt at all.
I have been blessed to be able to take 2 showers -- no shower shirt necessary - just not really soaping around the scar areas yet - too nervous - but even washing with water is nice.
Everything is really tight and the nerve pain does get to me sometimes. It's all a balance - but I don't quite feel like I am able to get fully off narcotics yet - which I hate - because my brain is mush. I have NO Idea who I have talked to on the phone and people want to come visit and bring food - and I had to start writing it all down because I don't know who is coming when.
I had my post op with PS yesterday - what a nightmare!!! made me wait an HOUR - then came in completely rushed - paid no attention to me whipped one drain out and left.
It was horrible. I go back monday for the last 3 drains to be pulled - hopefully. I asked another sister survivor to come with me because I am not sure I can handle this on my own - and I know she KNOWS what I am feeling so she can help me.
I am praying for those of you healing and for Hope today and for the other sisters in the days to come.
I echo what Sarah said - I don't know what I would do without you girls!
Tina
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Tina,
I can only imagine how uncomfortable you must be, with having drains in both your sides (like me) AND the back. I have a lot of trouble with my R drain - last night pretty sharp pain for a couple of hours with trouble getting a deep breath. Had to take narcotics to dull it...fortunately was able to fall asleep. I guess you have to sleep on your back and that must be so sore putting direct pressure on the drains:-((((
I assume you try to eat something small each time you take your pain med??? That may help with the nausea, if you haven't tried it.
So, even though I'm progressing nicely, I still find I'm taking a 1/2 Demerol once or twice a day. I think things will be significantly better once these drains are removed, since that is the primary source of my pain. I think the one on the R is rubbing a rib. Oh, to be able to take a full breath - can't wait!
So sorry for your bad post-op visit...grrrrrr.....wish those unempathetic health care professionals we all seem to run into would have to spend an hour or two in our bodies. They really need a wake-up call. Thank goodness for the wonderful ones who really do stop and listen and care. That is an excellent idea to have someone with you - we all need a support buddy at these doc visits!
I, too, am so glad we all have each other to listen and send/receive virtual hugs! No one understands our pain, fears, and hopes in quite the same way.
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dancetrancer - beautiful grrrrrllll thank you for your compassion...
I cannot WAIT to get the drains out - I sleep in a chair leaning on my right butt cheek - so as not to put pressure on that back drain or the huge incision that runs down my back.
The tightness in my chest is a constant - cannot wait to get this freakin bra off - and the ache around my armpits comes and goes. The visiting nurse said my BP was low - I said to him "You try to get a good deep breath going with a vice around your chest and tubes popping out of you" - he laughed.
I am working on JUST tylenol today if I can tolerate it - and some ativan. The shooting nerve and muscle pain are the worst. IN addition to the drain sites which hurt mostly when I bump or rub them.
I finally had the energy to bring my laptop downstairs and join the online world again....
Glad to be here with you ladies - hugs to all.
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Uggh chonikel! I hate that chest tightness, too. I'm feeling so much like a need a big breath, a big yawn! Sometimes I get one in, and it feels so good. It makes me realize how shallow I've been breathing. That constant low-level pain I get near the drain with a deep breath has trained me to breathe small. I find it really helps to distract myself with a movie or surfing the internet, but sometimes I just gotta take a pain pill and chill out! Also keep telling myself each day that I am one day closer to getting rid of these drains and getting better!
So glad you are back online with us!
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Hey girls... Sounds like we are a lucky bunch as we have some great standup guys by our sides...My heart goes out to those who are not as fortunate.
Groovygirls - Congrats on getting rid of the annoying drains. I hope to join that club on Friday (fingers crossed).....
Sarah - Glad to hear you are getting some rest & feeling better. As for the shower question, my PS told me to start showering 48 hours post surgery and encouraged me to wash the surgical sites & drain areas to help prevent any infections. I was extremely surprised that I had full range of motion in both arms and could actually wash my own hair.
dancetrancer - Wishing you safe travels home tomorrow!
chonikel - So sorry your PS was such a butthead! Take a friend and don't let them rush you thru your time (we are paying them for their time so he owes you no less!)
MargieC - Thanks for sharing today's quote as it is so true!
Happy continued healing to the rest of my September sisters and THANK YOU!!! Have a great set of family & friends but they truly don't understand like you guys... Love ya!
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Ladies - I want to share the Recovery Song my husband wrote me while I was in the hospital- I asked for a song - but I didn't think he would do it - this will make you smile:
Tina's Recovery Song by Thomas Shaw (2011)
Love I gotta tell ya
I know it's been hard on you
But it's also kinda hard on me
I don't know how you do what you do
And I have questions you see...Love, where is the vacuum
And the cleaner spray stuff
And how do I know
When the clothes are dry enoughWhere are the pans,
and where are the knives
you've fought cancer 4 times
you must have nine livesNow I know it's hard on you
But it's harder on me
To be alone without you
And have nothing to eat!!!!There's a tick on the dog
Where is the front line
Where is the toothpaste
If you would be so kind...
Where are the trash bags
Where is my shirt
Where are the clean rags
For all of the dirtNow I know its hard on you
But its kinda hard on me
To be alone without you
And have a house to cleanI took out the trash
And I got the mail
And I know its small in comparison
And I don't want to failWhile you're in recovery
I'm here at the house
So if you can help me
Ill try to catch that mouse....Now I know it's hard on you
But it's hard you see
To be alone without you
The one who really loves meI know it's hard on you
I'll be so happy to see
My baby back at home
I missed you being with meI know it's hard on you
I'll be so happy to see
My baby back at home
I missed you being with me0 -
Whoohoo! All my drains are out! Didn't hurt a bit (first ones hurt more- not sure why)
PS is very pleased with results. Don' t need to see him for 3 more months. I didn't relize what a new procedure this was but I could not be happier with it0 -
Tina - Thanks for sharing - that was awesome!!! You got a keeper there!
Hugs....
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Tina Tina Tina! So psyched to see you here, but of course not psyched to hear of the pain, the druggies, the crappy visit to the doc. One drain out is at least a milestone of sorts - after getting two out yesterday, I felt/feel like a new(er) woman. I remember reading that the drains were the worst, and I'd agree. I have thankfully not had much pain from them, but they are so damn annoying and they also make me feel very freakish. I'm glad you're taking a buddy w/you to your next appt. You'll feel so much better, even if they make you wait - I'd be pissed about an hour wait even if I hadn't just had major surgery a week before. That's really unkind.
I've kicked dilauded to the curb at this point - wondering if in fact that was what I am allergic to. Itching is better today, not so unbearable, thank God. Strings were pulled by my PS and also my friend's husband who's a doc at MGH and I have an allergist appt. at 1:30 tomorrow to see if there is anything else we can do for now . . . and then I'll be in their loop for a big round of allergy testing once I heal up. I have been so lucky pain/discomfort-wise w/the BMX. Really not much (but no back incisions, or free flap/fat grafting, so that obviously makes my life easier).
As for showering - since we knew going in that I had tape allergies (which, ultimately turned out to be the LEAST of my problems!), they didn't put Tegaderm over my incisions - otherwise PS had said I could shower immediately upon coming home. Chief resident said sponge bath only 'til I f/u w/PS - forgot to ask about it yesterday during my emergency appt. so Thurs. for my "real" f/u I will ask. It'll make life easier. I was thinking I might even be able to wash my own hair if I sit on our shower bench and lean forward and am careful about reaching too high w/my arms. Today I just used the shower wand and got the lower body all done, shaved the legs, then sponged the top half. Hair is a little gross but hubs has promised to attack that tomorrow for me.
Just ordered myself some Coobie bras at Caryn's suggestion - they look super comfy and will give me a little support since I am now freed from that damn surgical bra/torture device. Guess that's one upside of having the rash from hell, right?
xoxo
S.
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Sarah, Yes! The Coobie bra can easily be a step in. I actually pulled it up over my capris when I first got it. Amazing how it can be so stretchy and give light support at the same time. Caryn
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yay groovygirls congrats -
and way to see the positive Sarah - this bra is KILLER!!!
Hugs to all0 -
Sarah - have to share my surgical bra experience if nothing else than to give you a good chuckle. I too decided to see how it would feel without the surgical bra so I went a couple of hours without it or any other bra (while washing the surgical one)... Sad but true, I was exhausted after my two hour stint and quite uncomfortable. Appears it takes alot of energy to hold up these stupid tissue expanders!! Hope you got the same chuckle my DH had... Needless to say, I currently have a good appreciation for the bra but hope to wean myself in the future...
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Odie, you always make me chuckle - I've heard those TEs are a complete pain in the rear. I have my implants in already and really, they feel just like having breasts (although they are FIRM). I am supposed to do very light "massage" twice daily on them to keep the skin from firming up too tightly around them and when I give these puppies a squeeze, they are like rocks. Ah well. Can't have it all. Anyone with silicone won't have this issue - it's just 'cause I'm stuck on saline.
I also have to tell you, Odie, that as I made my first shuffle around the floor last week after my surgery, I smiled as I thought of your Tim Conway comment. I really looked like him, for sure!
Sarah
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Wait, groovygirls - did not see your post CONGRATULATIONS, GIRL! So excited for you!!
Sarah
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Hello everyone ... This is my first post on breastcancer.org. I am scheduled for B MIBR on 9/29. While I'm fortunate to be a consultant in academic medicine with a past history as a cancer center exec (so I know my way around the system), I gotta admit that I am feeling anxious. I have lots of confidence in my breast and plastic surgeons, but here I am anyway. Looking forward to hanging out with folks who are actually going through what I'm going through. Quite a new perspective for me.
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donnad333 - welcome to the club! sorry you have to be here, but this is a really nice group of women and having this group has saved my sanity in the months leading up to my BMX which was last Monday, 9/19. There's a ton of information, lots of warmth, humor and support - just what you might need right now . . . . even if you know your way around the system - when it's YOU, it's a whole different emotional and physical ball-game.
Tell us what you need, we'll help you out!
Warmly,
Sarah
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Groovy girls - congrats on getting rid of the drains - they suck - literally, LOL!
Tina - beautiful song - brought tears to my eyes!
donnad333 - allow me to extend my welcome as well! This group has comforted me in so many ways - we understand in ways that no one else can what we are each going through.
Today I rode the recumbent bike - only 3 to 5 minutes at a time, with rest breaks in between, for a total of 30 minutes. I was surprised to find that I have had much less drain pain since. Must have moved something around/increased circulation - even though I wasn't using my arms. It felt like a big accomplishment!
Fly back home tomorrow afternoon. We will miss our little hotel suite. It represents my place of recovery and our little haven where DH and I healed together after my surgery. :-)
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How long do you have to wear the sports bra after surgery ? Mine is really bothering me and it feel comfy to keep it off at night,
Good luck and prayers to all of you who are having surgery.
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Welcome to the club donnad333!
I was told I had to wear the "special bra" 24/7 for several more weeks.
A quick public health reminder: get your flu shot and every one should get a pneumovax if they haven't already. We need to stay as healthy as we can!0 -
Sarah, dancetrance, and groovygirls, thanks for the warm welcome ... 24 hrs from now I'll REALLY have a knot in my stomach and knowing that y'all are here will help!
Sarah, you are SO RIGHT about how its different from this side of the street. There is nothing like perspective.
Saved my surgical camisole from my biopsy ... sounds like I'll be needing more than one!
All the best, Donna
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Sarah, dancetrance, and groovygirls, thanks for the warm welcome ... 24 hrs from now I'll REALLY have a knot in my stomach and knowing that y'all are here will help!
Sarah, you are SO RIGHT about how its different from this side of the street. There is nothing like perspective.
Saved my surgical camisole from my biopsy ... sounds like I'll be needing more than one!
All the best, Donna
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Good morning, ladies. Checking in w/the Rash Report: got a bit worse last night (doesn't everything?) but I was able to get some sleep. I am so sick of sleeping on my back. I did bring myself down a little more toward horizontal earlier this a.m. as my butt is getting really tired of the pressure of sitting up more. Today is my appt. w/the allergist, so we'll see what she has to offer.
My 2 remaining drains are ridiculous. I'm not sure why PS did not take all 4 on Monday, but the last 2 have a teeny dribble in each. That's on tap for tomorrow and if I were allowed to wave my hands in the air and dance a jig after they're gone, I sure would.
So Q for women who've had the immediate reconstruction w/implants and alloderm - share your hair-washing technique with me, will you? And I'm assuming there's no blowing-out going on, right? I am dying to be more self-suffiicient in the hygiene department. I already decided that for today's trip out to the hospital I'm going to put on a little makeup. The old me is coming back! Feeling horrified at the way I've been lookin' lately.
Donna, this time is the worst. I think pretty much everyone here would agree that although you feel like crud when you wake up after surgery, there is an enormous sense of relief that IT IS FINALLY DONE. No more anticipating, on to dealing and healing. You can do this!
I'll be thinking of you, Joanna & Sue tomorrow as you go in . . . looking forward to having you back on the board on the flipside. Hope all goes smoothly and recovery is relatively easy!
Sarah
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Hi all. This is my first post after weeks of finding tremendous support here from others going through similar experiences. I was diagnosed in March 2011 with a large tumour and had TCH X 6 before surgery (UMX and axillary clearance) in Sept. After TCH X 6 and before surgery was told that physically and radiologically there was 'no evidence of original mass'. For first time since diagnosis felt there was a light at the end of the tunnel. Just got post-surgical path report yesterday and am very disappointed. 14/29 nodes positive and some Grade 3 cells in nodes. A lot cancer cells in breast but breast removed with apparently clear (5mm) margin. Am now facing radiation for 5-7 weeks. Am scared. Did the chemo not work well enough for me to have a real shot at life beyond cancer?
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donnad333 --- I have added you to the list. - sorry you have to join us but this is a great group.
JoannaT, Sue and donnad333 --- you will be in my thoughts and prayers for a success and easy surgery tomorrow. sending you gentle hugs...
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Tina --- I love your song... I personally wouldn't know what I would do without my DH he has been amazing while I was going through chemo he cooked, cleaned, helped with laundry and didn't miss a single one of my appointments/treatments. He plans to stay at over night at the hospital with me (he knows I have a fear of hospitals). I have a couple of single girlfriends that tell me just how lucky I am which I know I couldn't have married a better man (22 years and counting).
Groovygirls -- Congrats on getting the drains out I can only image what a relief that was.
Sarah -- good luck today with your Dr appointment. I hope they can get you rash under control. I have a tape allergy question for you. I had a terrible reaction to the tape when I had my port put in (the clear saran wrap stuff). I developed a rash and when the tape was pulled off some of my skin came off too and I had sores and scabs. you mentioned you had a tape allergy what did they use on your incision?
I want to thank all my Sept sister who have had their surgery and shared their experience. Your experiences good and bad have helped me to prepare my mind for what is coming next week.
sending everyone a gentle hug...
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