September 2014 Surgery Sisters

You don't need much in the hospital. After all this time, I have it down to a science. Things you are sure you MUST have will likely sit unused in your bag. Many of us take books and magazines, computers and Kindles, and never once give them a thought no matter how long you stay in the hospital. Your phone that you can't live without? You'll find out how unimportant it really is. Chapstick and a little drink of something to soothe your sore throat is so much more important. You might be nauseated for hours and the most important thing will be that little plastic curved basin that fits right next to your mouth.

Things you might be glad you have:

Dental floss and a few safety pins. Drains have long tubes and those tubes can get caught on things. You can scoot over in your bed and accidentally yank one. If your hospital doesn't give you the kind of surgical bra that has little pockets to hold your drains, take a long loop of dental floss and tie it loosely around your neck. Use the safety pins to attach the loop at the top of the drains to the dental floss. (This is also handy when you take showers. If the dental floss is uncomfortable, buy some small flat elastic. Secure it together at the end of the elastic loop with one safety pin and use the others to attach the drains.)

A cheap, throw away wooden spoon. Reaching over and down to wipe myself in the bathroom was made so much easier with this. Just wrap a bunch of toilet paper around the end, wipe away, and let the paper fall off in the toilet. It's a life saver in the early days when you have a bad case of T-rex arms and are in pain too. Toss the spoon in the trash when you leave the hospital.

Little heart shaped pillows: I was given two by the American Cancer Society. (They will also send you two free soft bras.) When I saw the little pillows I couldn't imagine how important they would be. They fit under your arms and make it possible to support your body in ways it never needed to before. Make sure they are not firm...you need squishy, lightly filled 10" wide fabric hearts. Use two pieces of scrap fabric and a few hands full of loose foam from Walmart. (In a pinch, use a zip-lock bag and cotton balls but you will miss the "dip" at the top of the heart and the "point" at the bottom...both so important.) The dip fits perfectly under your arm and the point keeps it in place on your side, even when you move. If you have a square pillow, the full bottom will get in the way and push on the bed, knocking the whole thing out of place. The pointed bottom of the heart won't do that. Weeks later when I was ready to try sleeping on my side, the little pillows kept my top arm from falling down and kept the bottom implant from pressing against the bed. I still use one in the car - seat belts can hurt! The breast cancer clinic at the hospital gave me a bigger, firmer heart that I only used next to my head. Really kind of useless. Too big and too firm.

Don't bother with: underwear. You'll get LOTS of fluid in the hospital and will be hitting the bathroom OFTEN. It takes a while to get up and shuffle to the bathroom. Underwear is just something else in the way of you and the toilet seat when you are in a hurry and in your haste, you might pull on the drain tubes too. (Did it - both sides - thought I was gonna die! OUCH)

Do bring a pair of button front pj's. Even if all you can get is a sponge bath, changing out of a hospital gown makes you feel better. They will want you to walk. You can use a hospital gown on backwards as a robe. No one, including you, will care what you look like.

Wear something to the hospital that you can wear home and make sure you don't have to put on tie-up shoes. I put on slip on sandals and a casual "lounge around the pool type" strapless dress with an elastic top. I stepped into it and my husband pulled it up. You might want a scarf to throw around your neck and let hang down to cover the surgical bra straps.

Take a big bottle of hand sanitizer and this sign below. Put them on your tray table so everyone can see them when they come in. Don't be afraid to point to the sign. You'll be shocked at how many times the staff comes into your room without washing their hands!

Couple of QUESTIONS: 

My visiting nurse is NOT coming out until tomorrow (she didn't come today, as I'm only allowed 5 visits per week).....I am "oozing" clearish pink liquid from my drains on my left side. I am draining still a lot of fluid along with white chunks on the right side?! Very ODD. The liquid soaks through the gauze pads IMMEDIATELY when I take them off and place new ones on....and between the time I go to exchange the gauze pad underneath the drains and then place one on top of the drains (with incisions holding drains onto my skin) I realize I am leaking liquid ALL down my side!!! It is a rapid leak.....so I am not sure my drain output is quite what it should be, since I am changing my gauze pads non-stop because they just keep filling up and making me all wet on that side! What a strange thing to happen. Nurse last night told me that once she changed the gauze, it shouldn't happen again. It DID NOT happen again on my right side, but my left side is SOAKED underneath the drains and also has what looks like a hematoma (where the drains are- there is a huge lump that looks very bruised, but NOT on my right side). Could this be the cause? Should I wait until tomorrow to hear from the nurse and see her when she comes or shall I call the visiting nurse phone number and alert them of this issue? Is this common to ooze rapidly from my drain area (rather than inside my drains?!) I still have output in one of the two drains on the left side, but the other drain doesnt have much at all, and that seems to be the one leaking the most.....so I can't be getting an "accurate" measurement of liquid removal for each time, since I am soaking it all up with gauze pads. 

One more thing: On my right side when I stand up, I have the most SHARP/STABBING pain I have ever felt!!! I have to HOLD my chest on the spot that hurts (but it's NOT on the outside- it's on the INSIDE) and it hurts so badly to walk, stand, move because the pain literally brings me to my knees and sucks my breath out of me. It's SO SHARP! Literally feels like I'm being stabbed and I go pale instantly and see black.....I try to take a deep breath at that point because I know I will faint if I don't (from the pain), but wondering if anyone else had this happen? I thought maybe it was a drain, but it definitely is NOT on the outside......it's towards the middle to corner of right side of where my breast used to be. 

I am taking Bactrim each day for infection, and noticed today that my left lung hurts VERY bad. It's sore, and when I take deep breaths and do the breathing exercises that the nurse showed me, I have wheezing. I'm doing deep breaths as much as possible......Because I'm pretty sure I'm starting to get pneumonia....YUCK! I've had it before, but don't know if it hurts the front of my chest also? I never experienced that before and can't associate the pain I have from the BMX from the internal stabbing pain I have.....very strange sensations going on. 

Just wanted to ask those who've gone through this and see what their own experiences were......not sure if I really want to  bother the visiting nurses right now, just because I'm a "leaky faucet" from my drains on the left side......What to do? lol

Other than that, I am on TWO pain pills (Oxycodone 5mg) now every 4 hours (helping AMAZINGLY!!!!) and 5 mg Valium 3 times per day rather than 2. So now with a new Rx from pain dr today, I can now go ahead and stop splitting them in half and take a whole one which is SO HELPFUL! Talk about relief.......Not that my Niece likes me being more "mobile" now......LOL. I am getting up on my own, sit on the edge of the couch because of the stabbing pain I feel instantly, and then I slowly go to standing, because my legs feel like "Bambi on ice for the first time" lol.....they get very shaky. 

I'm doing much better with pain control and spasms, so I'm in a much better place.  

Glad I didn't scare you off, Enlm! I hope I'm somehow helping those who need it. I wouldn't change a single thing! Even with my nipple getting blacker by the hour, I am SO happy I had the surgery and it's overwith. I can now go forth and get to the next phase. So I'm glad I have helped inspire you to go forth with your own journey. God Bless you. You're such a sweetie. ALSO: I have a chase that reclines a bit on the back of it, and I have been camping out in my living room since coming home on the 24th. I placed pillows all around me and made sure to place one under my tooshie so that I don't slide down. My Niece was helping me by placing her hands flat on my back and helping slide me towards the edge of the chase. It is a God Send to have this chair!! I will migrate to my bedroom hopefully next week.....for now, I am COZY! I am glad you mentioned that you have one! Just get LOTS OF PILLOWS. Put them all around you to prop up your arms. I have my Niece place the laptop or iPad on my lap and my arms are in a good position that works for me. Hope this helps. p.s. about the supplies: I bought "Equate Personal Wipes" from walmart (they were only like $1 or something for several single packets. The wipes are thick and I use them for my armpits 2 times a day.....They are a BLESSING! They smell so great and work amazingly. I also highly recommend "Burt's Bees Lip Balm" in the little metal jar.....I loaded it onto my lips and corners of my mouth before surgery and my lips were good to go after 6 hours of surgery! No chapped lips for me. And STOOL SOFTENERS or Miralax, because even the healthiest colons end up getting blocked up....I take 2 stool softeners each time I take my pain meds and Miralax once a day (have even taken duralax pills) to try to "go" but so far, with my stubborn colon, no such luck, lol. But, those are my most valuable assets that I used in the hospital and still using at home.  

Ilovecoasters: I am so sorry for the news. I pray that you're able to find a good remedy of healing that will work well for you, and that you heal quickly. My prayers are with you during this very sad time you're going through. You're such a sweet woman, and I know you will pull through this. Allow yourself to cry, yell, get it OUT, and we are all here for you when you want to come to us and talk about it. ((((((HUGE HUGS))))) from Massachusetts to you. xoxo

Su-CQ, SO happy to hear it all went well.....and you're online! That's amazing. So happy you've done so well this soon. I pray it continues being such great luck.  

Mulligan: awwww, thank you!! My little ON-Q "bowling balls"(that's what I call these huge things) are FINALLY shrinking and are half the size they were when I first left the hospital......so now they are so small that i have extra room in the Pink Pockets (drain holders)! So glad. I love these things and highly recommend them. Both drains on Both sides fit into one pocket. I was overjoyed. You're a sweetheart yourself. You've given me such great advice and have helped me through this process. I pray everything goes smoothly with chemo and that your birthday is an excellent one. My prayers and heart is with you through this process. I'm here for you my friend. xoxo

MarieJune, i haven't had my surgery yet but the leaking of fluid and sharp pain sounds intense and if it worries you, it's worth a call to the nurse, I don't think you would be bothering them at all! After all is kinda their job. I really pray u get some relief! Thanks for the tips I will definitely get those pillows and wipes and lip balm! I really gotta make the chase work, my twins (15 month boy/girl) love to be in my bed and I most definitely will Not be able to handle them in bed with me after surgery! 

Oh, I also Googled those pink pockets for the drains, but don't think they will be shipped in time so i got a little clever, i took an old oversized button down (my husband's) a square cloth (bandana) and made pockets and sewed them on the shirt took maybe 10 min! The shirt already had 2 pockets on each side at the top, i added 2 lower pockets. .I'll have to wear the shirt inside out so the pockets will be on the inside, but it's okay. . It's not like I'm going anywhere lol

Also, I completely agree that people need to share their experiences no matter how positive or negative they are. Sometimes two people can have, in theory, the exact same recovery but their perceptions are very different, their pain tolerance is different, etc. I had chemo and never once wore a wig and went bald as a cue ball the whole time while some other women wouldn't be caught dead going out without hair, a hat, or something on their heads. 

This is YOUR journey, and you have the right to share as much or as little of it as you choose. I'm an avid blogger with a fairly decent following. Some of my extended family members are not thrilled that I am sharing some really personal details about this journey. Bummer for them! 

iLoveCoasters, thank you. I DO feel much better than yesterday now that I'm getting better pain & spasm medication into my system. Other than upon standing, and then staying in an upright position, and walking- that's when I get stabbing/slicing pain in my chest towards the right side. I'll ask visiting nurse tomorrow what it could be. thank you for your support. ((((Hugs)))). How are you doing? What are your best & worst things right now? Hope you're doing well & continue to heal perfectly. Lots of love & my prayers & blessings are with you.

Elmn, Look @ you GO!!! Awesome! I was super lucky & Mulligan sent me my pockets. I'm so thankful I have them. Can't imagine them being wrapped around my stomach on an ace band! I have so much easier mobility with them pinned with BABY SAFETY PINS to the bottom of my breast binders they gave me & then slide the drains into the pockets. you did a GREAT JOB!!! You go girl! Kudos!! The things I mentioned truly were my God Sent GIFTS that were necessities. Load on the Burt's Bees Lip Balm (in the thin silver jar) all over (especially in the side creases of your mouth). I used the tip of my nail to get a lot out and then loaded it on. I woke up with nice soft lips after 6 hours of surgery. make sure NO VASELINE products what-so-ever! I found out we can't place anything with Vaseline onto our face or lips because it's HIGHLY flammable in anesthesia. Good thing to remember.  Aww, you're a mom of boy & girl twins too? Congratulations! I am too! Mine are 7 1/2 years old. The chase chair will work amazing for you. Just make sure pillows are all around you & one under your legs (then place a blanket on top to keep the pillows in place) and to keep you from skipping downwards! Good GRIEF, it's hard to slide down & realize you're "frozen" and do some creepy shimmy shake thing (like slight rocking) to try to get myself back up where I needed to be but couldn't. Lol. It is funny to my kids though, lol. 

Noonrider,  you're such a sweetie! Taking care of all of your children (with their special needs/Down syndrome) and have endured SO MUCH! Your heart is seriously made of gold! (((((Hugs))))) I am glad you post your blogs, updates, and posts up throughout your journey. And you're right, our family members may not quite "understand", but WE DO, and I know being a blogger/updater myself, it helps to not only look back to see my progress, but also helps those with doing internet searches for specific things and it leads to our journeys. I'm glad you message and update. It has helped me! 

MarieJune, glad you are feeling better today.  I am still extremely worried about the amount of fluid you are losing in and around your drains.  I'm anxious to hear what the nurse says tomorrow. I am very glad that your pain has been managed. Each day will hopefully just get better for you!

MarieJune, don't trust your health to an anonymous nurse who comes to your house. I've had the most unprofessional, horrendous care from them way too many times. Go to the ER. What you are experiencing is NOT normal.

I try to be positive and find a "good side" of everything, but the closer I get to to surgery it just makes me sad. I know its people in the world worse off than me but i can't help feeling, disappointed, nervous and down, I really hate this and wish I didn't have to go thru this.

I know how you feel Enlm20. People used to tell me how "lucky" I was to only have breast cancer instead of ______ (fill in the blank.) They also think that once you have surgery, you are cured. If you tell them there is no cure for breast cancer, only treatment that you hope will keep you NED (no evidence of disease) forever, and they argue with you! They all know people who have been cured <sigh> and can't figure out why you aren't "over it." I've had four surgeries now with a fifth coming next week and some people ask why I'm not satisfied with the implants I have and how much they wish they could get "perky new boobs" too. I admit to feeling the urge to punch one of them in the face! You know, in America we are supposed to be tried by a journey of our peers. If I did follow through and got arrested, I'd insist on a jury of women with breast cancer. I'd get off with no problem.

This is a journey of ups and downs and mine might come at a different time than yours or be harder to deal with, last longer or could be just a minor bump in the road. Sometimes I've wallowed in pity and other times I've let a similar situation roll off my back. There is no road map to tell us the best way to find out way out of this mess. We deserve to feel defeated, depressed, hopeless, and sorry for ourselves whenever we want to. There is no time limit for it either.

Hope you wonderful ladies had a peaceful Saturday. Sandra, I'm also on FB. My name is Michelle Ferren.

Sjacobs146, thanks.. glad to know you went through it and came out alright. It's no walk in the park lol but you're here!

Hi ladies my mast with tes was Wednesday. I am having a bit of a hard time. The pain is hard to manage. I would like to back down on pain pills because they make me sick, but when I skip or only take one than the pain gets to be to much. Someone please tell me this gets easier. I am feeling discouraged tonight.  I am taking 2 hydrochodine every 4 hours. I have 4 drains. I have 150 ccs in exp. which is probably more than my breast had to begin with. They spared a little skin but not the nipples. I am just wondering if there is a pill we can take and wake up a week later!

Smitty333, it does get better..you are only a few days out.  Just try and stay on the pain meds a few more days before weaning off off them, you don't sound ready.  But hanging in there it will get better soon...especially once those drains come out.  Those TE's are a nightmare but even they become bearable...eventually.  I know I questioned my sanity wih the TE's..but I do think it was worth it in the end.  But it is hard to see that at the beginning when all there is is pain and discomfort.  

Thanks you guys, I do feel it getting better everyday, it is just a slow process. I know the pain is mostly caused by the tes, and eventually all of the pain will be worth it. Thanks for the Percocet tip, I might talk to my Dr about that.  I agree with you guys about everyone talking about how lucky I am to be getting a nice new "set". Seems to be one of the first thing people say. Drives me nuts. I let them know that it's the worst thing you can say, at least in my opinion. And I was guilty of saying it to my sister in law when she was diagnosed. I am also on Facebook if anyone would like to send a request my name is Jaime Guyette Smidt. Have a good night everyone.

iLoveCoasters 

Thank you for sharing your best and worst through this. I am so happy that you have such an outpouring of love from your friend & family. That's SO important!! You are one blessed woman. Bless your heart. About the chemo- I have never had it (I took tamoxifen a couple years back and stopped taking it over a year later), so I can't offer you much advice.......but what I can say is that your fears are VALIDATED, I'm glad you are talking about it and are open to speaking about it on here with us ladies. I know many of the Sisters here can offer you support and advice. I pray you sail through it and are able to heal quickly. My thoughts and prayers are with you. You're one strong and sweet woman. I'm glad I met you. ((((((HUGS)))))

Marie