AUGUST 2015 SURGERY SISTERS!!

quiltlibrarian

Artista great to have 2 drains removed. Sorry to hear about your gp. Hope she will feel better soon.

39andhip

Molly, I am also terrified of pretty much everything that awaits.

Molly50

Arista, I am sorry you have to go this alone. It must cause some anxiety. I will say extra prayers for you. I got good news today! The MRI showed no suspicious areas in the right breast and no node lit up. I am so relieved. Quilt librarian, congratulations! I didn't feel anything when my BS removed the drain after my last surgery except relief.

Artista928

Great news Molly50 and thanks for the extra prayers. It's looking better on my guinea pig as she's started drinking and eating more so hopefully whatever it was passed.

Artista928

Thankfully Mooshy my fuzz girl is looking better but still am keeping the Sat appt with her vet, and have my friend drive me to South San Jose.

Today I went to Safeway (3 mi to and 3 mi back). Driving was fine. Walked several isles ok. Was getting a bit tired at the end. Still can't lift more than 5 lbs at a time so created smaller bags best I could since as usual, bought more than intended. Then had to climb these steep steps to get into the apt. 3-4 trips. Don't think I did any damage as everything feels the same, except my upper back! Man is it achy. Weird cuz I usually have lower back issues but not now.

SummerAngel

I had my pre-op appointment for my exchange surgery yesterday afternoon. The elderly nurse who did my medical intake for the surgery center tried to shame me into letting go of my lymphedema prevention precautions. She's the first person I've run into in the healthcare world who did this, it was so frustrating! I said I needed to have the IV in my foot and BP on my leg. She said, "Who told you that?" Like I'm listening to some whacko in order to make my decisions. She went on and on about how IVs in the foot are "just a bad idea for so many reasons." Yeah, like I want an IV in my foot when I have wonderfully easy-to-access veins in my hands! She asked how many nodes I had removed and then tsked and said that it was hardly any, while looking down her nose at me. Then she had the nerve to act like she understood me by telling me she had a mastectomy, too. I asked her if she had nodes removed from both sides and she said no. She has an arm she can use without fear!

I'm tempted to print out the "What we need our doctors, nurses, and all other healthcare personnel to do and know about lymphedema" article from stepup-speakout.org and hand it to her when I go for my surgery next week. I don't want other women to be treated that way!

Queen_Celeste

SummerAngel:  Glad to hear how outspoken and tough you were with that nurse!  Seriously, you need to report her - to the director of the surgery center? - so at the least she will get some updated education or training.  (It may have nothing to do with her age.)  Perhaps they can provide this training to all their staff!

wrmbrownie

So I have a stupid question...I had a lumpectomy/axilla dissection on 7/28th. I remember them saying not to lift more than 5 pounds...but until when? A month, a couple month, forever?

And how long do we wear the surgical bra?

mjh1

summerangel - glad you spoke up.  It is just so irritating when they have no regard for the patient's feelings.  I wonder if they were the ones that had to live with the potential side effects of having an IV or BP in an arm where lymph nodes removed (no matter how many) how they would feel.  I really think it is just old school thinking where they think it matters on the amount of nodes that were removed. 

wrmbrownie - glad the LX went well.  Usually, the weight restrictions on lifting is only for the first two weeks, depending if your stitches are healed.  You should definitely be out of the surgical bra by now and be in a sports bra or genie or coobie bra, probably no underwire just yet.  It is always best to ask your doctor though.  If you're not going back to you BS for a while, don't be afraid to call or e-mail with questions.   

Artista928

My no greater than 5 lbs at a time is for 3 wks post sx. I don't mind. I'd rather go slow and not possibly mess things up. I'll ask him again to make sure he wouldn't rather have me go longer, but I'm not going shorter amount of time.

I'm still wearing a cammy, no bra. Sx bra came off last Mon so had it a few days. On Fri when I go to RO to see if she recommends rads now, I'm going to stop at the women's center right there and go to their bras etc shop. I'm just not sure how it would work. This stuff is pricey so if I get one that fits now, what about as the fills happen? Need to upgrade or does it stretch with you? All cammy is doing is some pressure/cover, does not fit under the breast. I got them when I had full breasts so the line that would go under your breasts is more on my stomach. lol. oy. Anyone know or should I stick with cammy all the way till fills done?

Ringelle

I've had 3 sx this summer, the last one was a bmx last Thursday. My BS has never given me a weight restriction - even when I asked about it. He just said get back to life as soon as possible! I just don't push myself past the point I start feeling pain. After my two lx, I stayed in my sports bra night and day for 2 weeks. I never had a surgical bra with any of my surgeries. With the bmx I don't feel much of a difference between wearing the cami and not as far as chest support. The cami actually hurt because it pulled or constrained my drains. One of my drains malfunctioned this morning. I had to go in this afternoon to see my surgeon. I was dreading what that would mean. He ended up pulling both my drains and was able to give me my results! We don't often get to do a happy dance around here but i am thrilled to report that everything came back clear! I won't know until next week if I have to do radiation or tamoxifen but the BS says he thinks I'm done until I go for reconstruction (hopefully sooner than later). Tonight, I'm doing a happy dance!

quiltlibrarian

Ringelle whoo hoo no drains for you. Happy dance.

Summerangel wow I can't believe that she said that. When I went for surgery, on the first page in huge letters "No BP or blood draws for left or right arm". BP was done on leg before and after surgery, but iv was in left hand. This was only done after my surgeon said it was okay. Other wise it would been in my foot.

Artista928

I have a few medical ID bracelets that I had engraved basically stating no BP/IV/Blood Draw left arm, that I wear on my right arm as a reminder to me too. I can space as I'm left handed so the bracelet reminds me to do stuff on my right arm.

Molly50

I never had weight restrictions after my Lx and no surgical bra either. When my drain was removed she said work my way back to my normal activities. I went braless after surgery or wore a light weight cami. I still can't tolerate a bra for long. I have a pretty big seroma which hurts with pressure on it.

Suzy1067

Good Morning sisters!

I am happy to report that I'm back at work (worked from home last week) - it feels great to have my "normal" routine back.  I'm 2 weeks post-op yesterday and still wearing the surgical bra - today I have my first fill and they will evaluate me to see if the surgical tape can be removed and if I can begin wearing a different bra.  My restriction on lifting was 8lbs - no more than a full gallon jug is what I was told.  I'm ready to find out what if anything can change as far as restrictions go.

Grace and Mkinoly - I'm hoping you guys are home and feeling well after your surgeries on Monday! 

Artista, I feel the same about the TE's - the middle sternum is the worst....what in the world makes that hurt?  I don't feel there is anything there.  So, odd! 

I am getting a lot of feeling back, but, still numb under my left arm where the ALND was done.  I'm hoping that improves over time.

I wear a RoadID for running that has contact information incase anything happens to me on a run and I have no id with me.  I ordered an additional plate for that band with the no blood draw, IV/BP on it with a little medical alert emblem.  Thank you for the idea of wearing the warning...I want to take all precautions in preventing lymphedema!

Molly50

Suzy, that's so encouraging that you are already back to work. I hope I have the same experience but plan on 6 weeks out just in case. My ALND site is starting to get feeling back at 3 weeks post op. The incision is tight so I stretch it regularly and I hope my BS is willing to refer me to a PT because the scar is very tight and like a cord.

dimccleland

Hi lovely ladies ... hope you are all doing well and recovering from your various surgeries. I had a UMX & ALND yesterday ... surgery went well although my surgeon did have to take more chest muscle than expected as the tumour was stuck fast. The anaesthetist did a fantastic job and I had no nausea or adverse side-effects. Did have a pretty sleepless night in hospital last night and was very pleased to be able to come home today. I'm quite sore (particularly around the ALND site) and very stiff but otherwise am doing well.

Scotland, like you, I am feeling much better mentally and emotionally after surgery than I did before ... definitely a good thing!!

Love to you all xx

SummerAngel

I think I actually will print out that form from stepup-speakout and give it to them. The surgery center is connected to the plastic surgeon's office, and he does a ton of reconstructions. I doubt he realizes that there are people in the surgery center with that kind of attitude towards lymphedema prevention. I do have a medical alert bracelet that I wear, too. I realize that it's annoying for them to have to do foot IVs and that foot IVs aren't preferable, but I don't have an arm to use and I really would rather deal with the difficulty of finding a foot vein than to risk a lifetime of lymphedema. I just really don't want anyone going through breast cancer treatment to have to deal with a person like that. If I had been feeling bad from treatment I think I probably would have cried!

georgie61

Hi Everyone...I've been reading a lot and not posting - just because my surgery hasn't arrived. I'm one of the end of the month gals 8/28 BiMX w TE. I've received a lot of helpful tips and support and mostly great reports on recovery - so why am I so anxious and even more depressed? I'm crying at the drop of the hat - even hyperventilating sometimes. I'm trying to be strong and I don't even think it's about the impending surgery - I think its just the diagnosis and the imagining of worse case scenarios long term -. I don't want to be in this dark place- I'm trying really hard.

My husband and I spent this last weekend with our 26 yo son in Reno and "celebrated" my bday which was Monday. I say "celebrated" - because I'm still getting queasy, tired, not drinking of course, foods still aren't tasting great - even 3 weeks past my last chemo. They were so sweet to me - would do absolutely anything - and then that makes me even more emotional because I love them all so much - including my 24 yo daughter who couldn't join us in Reno because of a work commitment.

This weekend one of my dearest friends is coming to our town - because of a wedding primarily - but wants to stay with us so she can be with me as much as possible. I hope I'm up for her. I love her dearly, but she is ALWAYS cheery, and I don't want to let her down by being less than super strong and positive.

Well, getting ready to head to the gym. That has been the one constant - trying to get my daily exercise. Thanks for all of the wonderful support, everyone! xoxo Marcy (Georgie)

quiltowl5

Hi everyone! I had my surgery on the 13th and came home on the 17th. the thumb, index and middle finger on my left hand are numb since surgery and they told me it should come back....but I have to do these exercises several times a day. They only took 1 node on that side but it is amazing how much more swollen and sore that side is. The node was negative....Yeh!!! The exercises are simple and I feel needle and pins type tingling now and can even hold my med bottle to open with the right. Everyones posts on this list have helped me so much. I never thought about my upper back aching but it does..meds help. I bought a recliner before surgery and am so glad!!! It is where I stay in between bathroom and walks around the house. I am unable to get up on my feet by myself yet...but once up I am walking pretty good. No stamina is certainly an understatement. :-)) I certainly want to get some kind of bracelet to wear for no IV, BP or Blood draw also. The camisole with the pockets for the drains was uncomfortable to me so I fixed up a lanyard with them looped on and pinned to my pj top. I didn't think also about there being some discomfort when you clean out and make sure the drains are OK. I still have quite a bit of drainage and am glad that the drains are still in. My PS told me he will probably take at least 3 out on the 25th.It is amazing what we can get through...how strong we really are.

Good luck to all getting ready for surgery! We all are great for each other!!! :-)))

Artista928

You can get med ID bracelets on ebay I've heard and I'm sure other sites. I didn't want the traditional screaming med ID type so I got mine from here and told them what to engrave. Wearing it on my right arm since left is the bad arm so it does say No bp/ IV/ blood draw left arm. Also had more room so tossed in organ donor.

https://www.hopepaige.com/products#/?departments=women

AudreyB

Hi everyone.

I'm squishy!!!!!!! Lol. Exchange SX went well. Wheeled into OR at 12:20 and woke up in recovery at 3. Lots of pocket work both sides and PS said he removed some skin from left side to balance everything out. I think this was his plan from the beginning. My left was always bigger than right. Anyway, I feel amazing. Tired of course, but just got back from a short walk with my honey. The heavy TE feeling is GONE. I felt the reliefwhen I woke up in recovery. It's amazing. Instant relief. I just have some shooting pain once in a while on each side but Dr prescribed Percocet so I'll sleep tonight for sure.

Wishing everyone with surgery this week best wishes for an easy recovery.

Love

Audrey

mjh1

ringelle - there's no better time for a happy dance then when the drains are finally out.  Great news on the clear nodes!!! 

suzy1067 - you probably never thought you would say "i'm glad to be back to work."  After being on this crazy ride, it's certainly nice when you can get some normalcy back.  Even the mundane things that we hated before we're happy we get to do now because it signifies we're moving forward and  one step closer to the "new" normal.

dimccleland and quiltowl - glad to hear your surgeries went well and you're up to posting.  I hope your recovery continues to go well and you do not encounter any detours.  Rest well!!!

artista - don't waste your money.  There certainly is no need for you to wear a bra with TE's.  I would just go braless and enjoy it!! 

georgie - Pre and post is certainly one heck of an emotional rollercoaster ride.  There's no rhyme or reason as to when it hits you.  This is all perfectly normal and you have many new sisters to lean on for support on the days you need to be lifted.  Don't be too hard on yourself thinking that you have to be "strong" every day.  Sometimes a good cry is good for the soul.

mjh1

audrey - yay, you're on the squishy side!!!  I hope you will love the new "girls". 

 

Molly50

Congratulations AudreyB!

vogliodipiu

..thank you so much, molly50 and luvmygoats! the wire orientation sounds horrid and way too much like my biopsy (which was a nightmare) but i decided to not freak out until i get to it. i keep reminding myself that my port is coming out too which i am ecstatic about even tho i will get a herceptin/perjeta infusions every 3 weeks until next may.

also just wanted to wish everybody good luck with their surgeries this week, i'll be thinking of you!!

Eamazing

Hello ladies I'm having my surgery tomorrow and really don't know what to expect. Can I get any tips and pointers to make it easier for me? What has worked for you? I'm getting a mastectomy with immediate flap reconstruction. TIA

Eamazing

I was thinking about the same thing it's has been challenging to have the surgeons scheduled everybody is going on vacation and finally I will be having my surgery tomorrow. I was dx in the beginning of June.

SummerAngel

Audrey, so glad to hear your exchange went well! I hope you heal quickly! I was a bit nervous after my pre-op appointment, the doctor prescribed the same heavy-duty pain killers he had for the mastectomy! I'm only taking a week off from work and I was worried I may have more pain than I had anticipated. The nurse reassured me that I probably wouldn't need the strongest stuff, or if I did I wouldn't have to take additional percocet.

Eamazing, I didn't have a flap reconstruction so I can't help you there, but a couple of things that apply to anyone having a mastectomy is to take your pain meds as directed - don't let the pain creep up because it's hard to get it back down again. The nurses at my hospital didn't want my pain higher than a 5 on a scale from 1-10. Also, take stool softeners starting right when you get home. I've never been constipated in my life but I took them and I'm glad I did - kept everything normal in that area. I also found it helpful to have a list of my medications and the times I took them. My daughter kept track the first day or two and then I did it myself. Also, don't bring a ton of stuff to the hospital. Most of it you won't need at all. I brought things like makeup and additional clothing and never touched them. Good luck with your surgery, I hope it goes well!

Suzy1067

Marcy - what you are experiencing is totally normal!  I tried so hard to be strong and not let anyone see me "weak" or afraid...but, the nurse navigator gave me the best advice.  She said to let others help me, be honest with them - it makes them feel less useless.  When she made it about them instead of about me, it really helped.  I'm so used to being the caretaker (as most women/mothers are) it's so hard to let others do for us - but, letting that go and just being human really does help.

Also, the working out is awesome!  I feel it really prepared me for my experience.  My body was strong and healthy (other than the cancer) and I was able to be up and about more so than I thought I would.

Yesterday was a little tough - my fill was painless, but, it caused spasms and they felt really weird.  Also, since my drains were removed I had a little "old" blood that needed removing.  That was done right after the fill, using the same syringe.  It really wasn't painfull - but, last night I did take 2 pain pills which I have not done since the first week.  Today, I feel much better and I'm in a regular sports bra - YAY! They said it wouldn't be like that every time, but, I'm glad they removed the extra blood as it had my breast a little discolored like a big bruise.

I'm also very excited to be going to the Tim McGraw concert tonight...as we purchased these tickets before I got my diagnosis and I was worried I wouldn't be healed enough.  I'm thrilled to be going and wearing a more normal bra than the surgical one I lived in for 2 weeks.

Audrey I can't wait to be squishy!!

I love reading all the posts - congrats to all who've had their surgeries and are on the recovery path and blessings to all who are still waiting...it will be here before you know it and we'll be celebrating your successes!

XOXO

Suzy