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2018 - February Surgery Support Group

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Comments

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited February 2018

    I’m not exactly what kind of magic my anesthesiologist was able to do during surgery to prevent pain but he did something magical. I’m able to get by just with Tylenol (the stronger stuff made me sort of queasy anyhow) — so the drains are the most annoying with all of this. How much decrease in fluid did y’all have before they took yours out?

    Pathology came back, sentinel node was clear!

  • Fembot
    Fembot Member Posts: 59
    edited February 2018

    Mkn86

    Nice to meet you. I'm sorry you didn't get the outcome you wanted from chemo. We've got a really supportive group here, and wish you the best going forward.

    ReneeChicago

    I'm sorry you've been having such a tough time. As for the result keep in mind that your new breasts will look different in 3 months as they settle. Your plastic surgeon is the best person to ask about going bigger. They know what's technically possible for your skin and frame.

    Kaywrite

    Since your dx is DCIS right up to the skin, can you have the nipple taken and be cancer free? I feel like you should get a 2nd opinion. I don't understand how it's in the duct, non-invasive and removing the duct including the nipple doesn't make you cancer free. Maybe I misunderstand? I feel your frustration.

    Maggie2

    Congrats on getting the drains out. Gotta say it does feel good.

    SorryPickles

    Have a good day! I hope BMX surgery today went well. Rest up. : )


  • Fembot
    Fembot Member Posts: 59
    edited February 2018

    mountainmama406

    My doc didn't want to remove the drain until it was about 30 ml total for a 24 hr period. For some it takes 7 days, and for me it took 14 days to get to 35 ml. She felt that was close enough. Congrats on the sentinel!

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    Ahh finally Saturday and no work today.

    Thanks to everyone for sharing your experiences and concerns this month, as well as the survivors who have stepped in to help. I am so glad to hear from all of you on your individual healing journeys as I nervously await surgery. A life altering surgery at that.

    Diagnosis to surgery is about seven weeks for me during an epidemic flu season of post holiday delays and my mind numbed with shock and worry. Every test that comes back seems to have something else to worry about. Every step screams early menopause and possible future historectomy.

    I am 40 I know that's not super young but to me it's a shock coming from a background of sports and triathlons and a healthy lifestyle.

    I now realize fully the non discrimination of this disease especially seeing my genetic test coming back witha variant of BCRA2 and talking to an 11 year survivor who experienced the same thing but now today the panel includes her variant. Looks like she made the right choice and medicine advanced behind her.

    Thursday I was able to meet with a local ABCD group coordinator (the 11 year survivor who went flat) and get more information about this journey as well as there are free exercise classes for breast cancer survivors here through the YMCA (not a Y location though).

    My coordinator also pointed me to a local boutique in town where I went yesterday to get two post surgery camisoles that zips up the front looks comfy and has removable pockets to hold the drains as well as room for some poofy prosthesis that come with them also. I can use those during reconstruction. She is charging my insurance after my surgery and also said I can go back for up to six bras post surgery. I have really enjoyed my contact with The ABCD group and have more information to read through.

    My surgery is Wednesday morning at 7:30 and I need to do something fun this weekend like an escape room besides cleaning and laundry and my surgery checklist.

    I have also heard more from distant family members who I normally only hear from during the holidays as well. My aunt and uncle in their 70s want to visit at the hospital but my uncle voiced some frustration about dealing with his brother in laws brain cancer which I know has been an ordeal. I just told them to come if they feel up to it and are healthy in the afternoon since my surgery is early in the morning. My parents both died of lung cancer and this is my dad’s younger brother so the closest thing left. But again very distant usually.

    Anyone else have this change a family dynamic in a surprising way?

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    Glad your drain is out mountainmama

  • 32b
    32b Member Posts: 188
    edited February 2018

    Congratulations, Maggie! That's great news!

    Is everybody in this group done with surgery now and on the mend, or does anybody still have in coming up this week?

    Fembot, how are you feeling about how the incision looks? I've kinda made my peace with mine, but really can't wait to get it a little cleaned up and the tape off and everything so that it looks a little more normal. And obviously I'll be thrilled when it starts getting filled and matching the other one again. Really wish I'd been able to go straight to implant.

    Best wishes as always to all you strong, brave ladies!

  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    Im also curious how everyone else is feeling? I'm only 3 days post op but having alot of swelling and muscle spasms and aches. I just don't feel like I got many painkillers for home so trying to ration them out til I see my PS on Tuesday. I guess it hurts but it's tolerable. Wondering how long it took for anyone to feel like you didn't do a million pushups? Or how long before the swelling goes down?

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    nurse patient 35, one of the posts I read said after day 4 was significantly better!! Get some good rest! I have to wait until Wednesday for BMX and you will be much better by then

  • kaywrite
    kaywrite Member Posts: 38
    edited February 2018

    Thank you, 32B - you're right, the uncertainty is frustrating.

    Fembot - I know, right? Exactly my thoughts: how can the margins not be clear if the duct and all of its tributaries (for lack of a better word) are gone? And it's still DCIS And still low nuclear grade. I'm not sure about the skin removal, but I will definitely be seeking a second opinion. The surgeon doesn't seem to worried in the least, but I feel like there is unfinished business.

    Love and hugs to everyone awaiting procedures and pathology, and warm thoughts to all of you who are healing

  • 32b
    32b Member Posts: 188
    edited February 2018
    For what it's worth I'm on day 9 and down to just Tylenol for pain, although I still get the occasional spasm, especially if I've been leaning back awhile and try to change position. I think my TE might be moving around a bit, which doesn't help this.

    Does anybody else feel like a turtle on its back trying to get up from lying down?

    I know doctors are being stingy with opioids these days. I was on something called Gabapentin instead that's supposed to help with nerve pain. You should ask about that. I also found that Atavan helped as a muscle relaxant.
  • HopefulAC
    HopefulAC Member Posts: 46
    edited February 2018

    Jt3- I totally get you. I am 41 and was dx August 30th, I literally was the kind of person who didn’t get sick and only went to doctor for my gyn annual appt .. so when I learned that I had breast cancer (no fam hx) my mind was blown. Then they told me I was Her2+ and I’d need chemo before any surgery I was so scared! The journey on one hand has gone fast but also slow (see end of my message:) )To be now post BMX is awesome but I still have a way to go and this week I find out if I have to do radiation. Hoping no since I did the BMX but we’ll see what RO says Wednesday:)!

    maggie2- thanks for reminding me that drains do come out. I’m nine days post surgery and see my PS on Monday not sure if anything will be removed then but fluid wise I’m down to 30 to 20 ccs/day but he said he wanted 20ccs or less for 3 day so we will see. I should have my first fill for the TEs on Monday too as they weren’t able to fill anything during surgery.

    Mountainmama - congrats on sentinel node!!

    32B -I totally get the turtle reference so funny. The good thing is that my abs are getting nice little work outs haha.

    Nursepatient-I did definitely feel better by 4 days but it’s not that the soreness goes away completely I feel that still especially getting in and out of bed. I still have pretty good swelling at the top but the sides and under arm has gone down some but still a ways to go.

    Does anybody have any good sleeping positions they’ve found? If I’m propped up on pillows my neck ends up stiff but I lay to flat then my chest really feels it when I get up...

    I’m getting restless just being at home. It’s a beautiful weekend (I live in Fla) and it’s really starting to wear on me that I can’t do much iof anything :( I think it’s also bc I had chemo before since September so I’m ready to start the reconstruction part of it and return to “normal”

    Anyway, thank you ladies since hearing from everyone makes me feel not alone in this and I know you all really “get it”

  • westcoastgal
    westcoastgal Member Posts: 11
    edited February 2018

    I felt much better after 5 days, and moved to Tylenol only. Swelling went down quite a bit as well. And it got much easier to move around.

    I had a batwing mastopexy on the right, because I had enough tissue to just reconstruct the breast and be smaller, and had an immediate reduction on the left to match. Plus is that this gave my oncology surgeon the entire top half of my breast to get everything out, minus is my healthy left breast now has a horizontal scar along it, too.

    I wasn’t happy with the pathology report. Lymphatic invasion, 11 of 12 nodes positive, 6cm tumor. I’ll have to have a more aggressive AC + T chemo treatment. It’s a little more scary now. But, clear margins, nothing in the skin, that’s good!

    I have some separation on the left, so my doc put antibiotic patches on to encourage healing. Plus I have a hematoma growing on the right I’m hoping will resolve itself this week so I don’t have to delay chemo.

    I’m trying to look forward and not dwell on the past, but my last mammogram showed no change, I felt a lump in my lymph nodes that went away last April, but the diagnostic ultrasound they did then didn’t show an issue. Doctors and PAs and Gynecologists examined my breasts several times over the past couple of years while it grew to the size of a tennis ball. It’s frustrating to hear “we didn’t see/feel it due to your dense breasts, the tumor hid in there.” Why weren’t we doing something else, then? *sigh* but then, I didn’t feel it in my own breast, so... water under the bridge.

    Wish I’d paid attention and seen this thread before surgery, would have been nice to confab with you all about the ups and downs earlier! I’m still fatigued, but trying to rest up. Found an oncology physical therapist that only works with cancer patients, so I’m looking forward to working with her to ease recovery and make chemo and radiation easier

  • westcoastgal
    westcoastgal Member Posts: 11
    edited February 2018

    Also, I didn't see a selection in the checklist under type of surgery that matched me, unless I missed it. No implant or flap, just rebuilding it all with what was there, which I think is considered a breast lift or maxopexy. Or does it have another name under one of the options? So many terms to learn!

  • Fembot
    Fembot Member Posts: 59
    edited February 2018

    westcoastgal

    I'm not sure but your procedure may be called 'autologous' which means in this context using your own body's tissue.

    32B

    I feel ok about the incision now that I've seen it a few times. For 2 weeks it was hidden by steri-strip tape and I imagined it to be smooth, flat. It's not. It's like when you're sewing fabric and there's too much fabric so it gathers unevenly and bunches up. It looks a bit like that. Maybe in a few months it will smooth out, right, I mean it's not done healing and settling. Too soon to judge.

    Nursepatient35

    Given time the swelling will go down. I think the painkillers also work to reduce swelling/inflammation which contributes to comfort. Spasms are awful! Sorry to hear. I didn't experience that.

    Good luck to all having surgery next, including:

    • Lizzie9281 Feb 19 BMX, ovaries
    • JT3 Feb 21 BMX
    • Bella2013 Feb 22 BMX
    • MKN86 Feb 25(?) UMX
    • ItsStillMe Feb 27 BMX
    Deepest apologies if I left any one out (let us know). Gentle Hugs!
  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    32B, I hear ya on how the incision looks. It's not a pretty site is it. I've seen lots of incisions in my time working as a nurse and they never look good until after a few weeks. Right now it just looks like a crappy seamstress job. I try just not to look at it much. I'm so worried about getting an infection so trying not to touch anything. My drain sites are just sutured in without any sort of covering over them so not sure if I'm supposed to clean those up or not. Again, I figured I'll just not touch anything. I guess I'll learn more on Tuesday when I have my first post op visit.

    I'm hoping everyone on here is feeling better each day. Today is the first day I haven't had to mouth the f word every time I get in out of bed so I guess that's progress.

  • Weeeddie
    Weeeddie Member Posts: 17
    edited February 2018

    Hi Ladies, this is my first post, I've been on the community board going through all your stories and honest to God you ladies have really kept me going. I had lumpectomy and SNB on 12th Dec. I had axillary level 2 surgery on Tues last 13th Feb because Sentinel Lymph Node had Micro disease the bugger. I'm back to get drain out next Wednesday and feeling pretty good. I have started Taxoxifen almost a month ago, so far so good. To say it's a roller coaster with emotions is an understatement but you know what I'm getting through it thanks in no small way to you all.

  • Teaberry11
    Teaberry11 Member Posts: 66
    edited February 2018

    I had my surgery on Tuesday 2/13- BMX with TE. Was supposed to be direct to DIEP reconstruction and was extremely disappointed to wake up to surgeon telling me I had 1 of 4 nodes come back positive during the sentinel node biopsy. So now I'm in a waiting game for the post op pathology report- hopefully will get by Tuesday coming up.

    Came home Wednesday and so far made 2 calls to doc office - one Thursday because right drain is not holding suction - which lead to doc office visit. PA and PS weren't able to figure out why but we are able to occasionally squeeze the suction back into it and maintain a pretty good output. PS said he likes to get drains out a soon as possible even if output is 50-60 cc a day but not until at least ON Q pain ball is empty so we will be heading in Monday for them to check and hopefully remove drains had about 45 cc and 60 Cc output yesterday.

    My other call to doc was because of the swelling and hard feeling on my left upper chest and under arm(cancer and lymph node removal side) doc reassured me this is normal and as long as skin is not turning bright red and burning or too cold to the touch and no fever things are progressing as expected. My BF and Mom have been taking wonderful care of me and helping manage my pain so I honestly can't complain. But I have to admit I have been a little slow doing the PT exercises because it seems to irritate the drain entry port. There will be plenty of time for PT so I am not stressing about it this first week.

    My daughters set up a meal train and we have been eating so good and healthy and each meal that has arrived warms my heart more than you can imagine. I am typically a very private person and have not shared my diagnosis with coworkers or extended family — my closest friends know and my daughters have shared with their support network and it's been just enough — everyone wants to do and help in any way possible — my house is full of flowers and food and love and support.

    I hope you all — my "BC sisters" - are getting the same. Reading your stories and advice have helped me navigate this journey! What an exceptional group you are!

    One thing I wanted to share that my nurse navigator told me — Nordstrom has a breast cancer garment department and many of their post surgery bras are covered by insurance — she is sending me more info and I will share when I get it!

    Nurse patient- we are cleaning around the drain site with hydrogen peroxide drenched sterile q-tips and that has worked great!

    Hopeful- I sleep on a recliner and it is wonderful - highly recommend getting your butt way back in the seat and letting someon push the recliner back for you!

    Fembot- thank you for keeping track of everyone — you are awesome!

  • 32b
    32b Member Posts: 188
    edited February 2018

    Good morning ladies. I hope everyone is feeling better today.

    Hopeful- I hear ya. I've been sleeping on my back, but it's really hard to get up if I've been in that position too long. Just woke up a few minutes ago and had some very painful moments when first sitting up/moving around. It's like a sharp, shooting pain that just lasts a minute or two, but I'll have a few of them when I first start to shift positions after lying down for more than a couple of hours. I like Teaberry's recliner suggestion. Wish I had one of those. I remember using the hospital bed in a similar way. I've tried a couple of times to roll slightly onto my side and rest that way, but it just doesn't work

    Fembot- My incision has just been under clear tape this whole time, which means there's still blood/scabs around it from the original wound and I'm hoping it looks a little prettier once the dressing comes off and it gets rinsed. I was also kind of thinking/hoping that part of the messiness of the suture line was about them trying to build a little bit of 3-D action towards reconstructing the nipple, but I could be wrong. My other incision where they took the lymph node is also pretty jagged, but like you said, too early to tell. They are only just starting to heal.

    Nursepatient- that's weird that your drain sites aren't covered, but then again, mine were covered almost to my waist for the first week, which made everything that much more itchy/uncomfortable/unable to be washed, so there's really no good way to treat a drain I guess, other than just getting those jerks out as soon as possible.

    Weeeddie- Really good to hear from you. I'm glad you've taken as much comfort from this thread as I have. It feels good to simultaneously do a little journaling and also know it's helping someone else. I'm not sure yet whether I'll have to take Tamoxifen. How is it treating you so far? Side effects?

    Teaberry- I'm waiting on path results this week too. I feel for you. Please keep my posted. I'm a pretty private person also, and it's been extremely humbling and I think overall positive to ask for and accept help. I feel like all I do is complain about drain sites, but yes, the main reason I'm not moving my arm that much is because of the darned drain, not so much the surgery itself.

    Good luck to everyone with upcoming surgeries! I hope you're finding it helpful in preparation to read stories from those of us who have been through it recently.

    ONE LAST THING: I've been thinking about putting together kits that include loose tank tops, fleeces with inside pockets, baby wipes, dry shampoo, etc. and holding some kind of fund raiser to provide them free or low cost. Does anybody know if something like this exists already? And if not, do you think it's a good idea? What else should go into a kit like this? (Teaberry, love your Nordstrom's tip. I wonder if we could get some sort of corporate sponsorship going on.) If anyone's interested in talking about it, I'll start a new thread under Community Connections.

  • Rjmjt120
    Rjmjt120 Member Posts: 12
    edited February 2018

    Hi all! I am 43 dx with DCIS, grade 3 ER+/PR+ on Valentine’s Day 2018. I will be having surgery this month not sure when yet and radiation. I had three strokes in October 2017 so I am not a candidate for hormone tx. That makes me nervous.I wish you all well!

    ~ Jen

  • Strengthandjoy
    Strengthandjoy Member Posts: 51
    edited February 2018

    hi everyone! My BMX is complete and I am recovering at home. It feels like there are little victories each day. These help me stay positive and to remember that this is a season. My surgery was 2/15 and they took the sentinel node on my right side as well. Pathology came back all clear!! Little by little the pain is lessening. How did some of you switch to just Tylenol and advil? I think I’m ready to do that tomorrow. I have been taking 1 pain pill every 6 hours.

    Sleeping in a recliner has worked way better for me then I imagined. I’m not sleeping during the day as much as I thought either, but I sit a relax a lot. I started going on short walks outside yesterday. This feels really good.

    What are you girls doing that is helping your recovery?

    It really does take a village to get through all this. The love and support from people is amazing.

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited February 2018

    yay Strengthandjoy! I wasn’t on my heavier pain meds for more than a day (they made me feel worse) and Tylenol has been handling things just fine. I think sleep is so rough because we aren’t exerting ourselves like usual to be tired. Trying to pass time sucks. I try to engage with my kids the best I can (today they painted my face 🤣) but they get tired of me not being able to do more than that and are off to play with my parents who are here. I’m a knitter and even though I probably shouldnt be back at that yet have worked some on a project I’ve had going. The best thing has been books (most libraries have an online collection) where I can escape a little more and forget what I’m dealing with.

  • Fembot
    Fembot Member Posts: 59
    edited February 2018

    Weeeddie

    Glad you found us. I think we all feel the same way; that others here shared information when we needed it and we're happy to do the same.

    Teaberry11

    Is the DIEP reconstruction delayed, or did you have it? I was sent home with an information packet which says that we all progress at our own rate and should exercise within our comfort level, nothing much the 1st week. Let us know how path goes.

    Nursepatient35 and 32B

    I had bandages covering 1/2 my side torso. I was instructed to remove it after 2 days leaving just steri-strip. I used wet wipes to clean but was careful not to get close to the wound. I thought it would stay clean if I didn't touch it, but wasn't given directions.

    Rjmjt120

    I'm terribly sorry to hear of your health challenges and your new dx. The good news is that DCIS is treatable, and if you want we'll be with you to encourage you. Since you filled out your profile you should see articles that will help you make informed decisions.

    By clicking on 'Main Site' then 'Menu' you can search for specific information. Let me know if there's something you can't find.

    Strengthandjoy

    Hey, good to hear that you're doing well. And clear path; that's fantastic. Sounds like you're tampering off the pain meds - listen to your body. If you can be comfortable with less, why not.

    Mountainmama406

    I think you need to post a pic of your face painting, for medical reasons I think we need to see that! 😜

  • maggie2
    maggie2 Member Posts: 240
    edited February 2018

    Nursepatient, I only had the tegaderm wrap across my chest, which covered the drain incisions just for the first few days. Once the PS pulled off the tegaderm, the drain incisions were completelyuncovered.

    Teaberry, I also had intended to have direct to DIEP, then direct to implants, and woke up with prepectoral expanders. It seems as if there is always an unexpected wrinkle in this journey.

    32B, as you all know, I complained constantly about the drains. Just remember, eventually they will be removed! Now, I’m complaining about these “turtle shell” expanders, as another had described them.

  • Weeeddie
    Weeeddie Member Posts: 17
    edited February 2018

    32B, so far Taxoxifen is Ok, but I'm only on it a month so waiting to see what happens

    Fembot, thanks for setting up this thread for all of us.

    Rjmjt120, I found the articles relating to my diagnosis were invaluable, they allowed me to take control back from the cancer.

    Jt3, I was diagnosed 12th Dec 17, the following week I had 4 of my in-laws call and as my husband said expected to see us preparing for the funeral!, they called that once and that was it. Good luck on Wednesday


  • Nursepatient35
    Nursepatient35 Member Posts: 106
    edited February 2018

    Just wanted everyone to know I'm 5 days post op and this was the first morning I didn't wake up feeling like death. Granted, I feel drugged from the occasional pain pills and Valium but I'll take the small victory. I still haven't found the right formula for taking my medicine. I'd like to just be on Tylenol and ibuprofen but those 2 alone aren't cutting it yet. I had to get into my old stash of 2 year old Norcos from when I had my last baby so trying to just use those for bad breakthrough pain. The drains haven't bothered as bad as I thought but I get spasms every time I empty them. Sorry if I keep posting the same stuff, but again I feel pretty foggy and forgetful.

    Still haven't taken a real shower since my PS didn't want me to until the drains came out. I'd give my left boob to be able to shave my armpits....oh wait.

    Anyways, hope everyone is recovering nicely and for those who haven't had surgery yet-wishing you peace and restful sleep in the days ahead.

  • Jt3
    Jt3 Member Posts: 103
    edited February 2018

    Nurse patient, are you able to walk around much? I saw some folks were alternating the heavy meds with lighter ones hope you can get there! I would call your PS about your pain for sure since everyone is different. Maybe a better med can be used as well. Glad you have a sense of humor. I have until Wednesday at 730 now to wait and I woke up at 3am today and wide awake. I went for a bike ride and thought yeah that’s what I will do ASAP after surgery is ride my bike! Almost 70 degrees here today. Today is my last day of work and I am not concentrating as well as I would like. Another tough thing is it’s the peak of a horrible flu season and people want to visit and I have just had to say no not til later. I don’t want to delay my surgery anymore with the OR being 3 weeks out. Tomorrow is the sentinel node injection at 4pm

  • mountainmama406
    mountainmama406 Member Posts: 64
    edited February 2018

    Jt3 — it was so hard avoiding people to stay healthy before surgery, especially when you want to take advantage of your mobility! That was about the time I found this group :) I hope your injection goes well

  • Strengthandjoy
    Strengthandjoy Member Posts: 51
    edited February 2018

    hi, I’m 4 days out and I felt better day 2 and 3 then today. I’m not sure why. I have a little tummy ache and just feel more tired then before. Just not motivated for walks etc. Are any of you still taking anti-nausea meds still? Do you think you pain med or muscle relaxer is helping better? Or are most of you taking both? I tried skipping a pain pill today for two Tylenol and I’m not sure if that is what is throwing me off or just all the stuff in my body. I haven’t taken a muscle relaxer since day 1. Maybe I need that... figuring out what works best is so tricky!

  • Fembot
    Fembot Member Posts: 59
    edited February 2018

    Lizzie9281 Thinking about you. Have a good surgery today

  • HopefulAC
    HopefulAC Member Posts: 46
    edited February 2018

    Hi ladies- I went to the PS and I saw my scars for first time! They had been under dressings since the surgery. They’re not lovely but not as bad as I had prepared for. Oh and my drains came out! So I’m happy about that.

    Also I got my first fill-60 ccs on each side. Got nothing at all filled during the sx so it was nice to get stuff in. During the fill itself I really didn’t feel anything and I was fine but nurse told me that I could feel heaviness or something later and boy was she right! About 4 hours later I felt pressure and sharp pain in my chest bone area as I breathed in. I’ve never had pain on breathing so got nervous and called PS office and they told me it was completely normal to feel this. I had heard about pressure and discomfort but not this kind of pain so wanted to share and now I know. She told me it should go away by tomorrow and it has decreased a lot since. I hope it doesn’t happen every fill.

    As for the pain meds strengthandjoy -I hadn’t taken muscle relaxers for first 2 days and ended up adding that and was able to get off the Percocet during the day and only took that at night until a week post BMX. Now on ibuprofen and the MRs.

    nursepatient- I’m glad there’s been a tiny bit of progress today and hope your Dr. can give something to help.

    Jt3 and any others waiting on your surgery- Wishing you some peace as you wait for your surgery:

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