climbergirl, give us the mx details!

SLH

climbergirl, give us the mx details!

SLH

Hi climbergirl,

Wasn't your mx last Friday?  How did it go?  Did you have a ride home, or opt to hike the 10 miles?

sally 

climbergirl

Hi Sally,

  

I did go for a walk yesterday, but no hikes home! Am planning to go snow shoeing up in North Conway this weekend as it is my birthday. My surgeon was kind of like "Um, with poles?" I reassured her that the snow shoeing would end up more like a walk not a hike and she then ok'd it

Who knows maybe I will opt for more shopping.

I posted the deets in another thread on YSC which I will post below....

Am recovering well on day 5 and was off the pain meds on Sun. Drain is coming out tommorow as the drainage is now under 30 cc. I spent one sleepless insane night in the hospital. The only thing that is mildly ouchy is where the drain comes out and that is not bad at all. I have not even needed to take advil....which my doc says she has no problem with unlike most of the posts I have seen here. She does not think it makes that much difference in blood quality. Tylenol is useless for me. 

However in retrospect I will throw in this update  see what you all think. 

 I was sent home with nothing to use for a temp form and no one talked to me about it. Mass Gen totally sucks in support so I am not surprised.  I have called Dana where my Onc and Rads peeps are and have found that they ROUTINELY get women set up for what they call the Puff program before surgery. Am going over there today. Talked to one of Dr. Gadd's nurses about the lack of a temp form and she was like, (I shit you not) "Well just put a maxipad in there for now."  I thought she was such an idiot that I didn't waste energy to tell her that it was the modern world now, we don't use those anymore and furthermore my chemo has put an end to all that and I would rather blow up a condom and use that instead. 

I think that I get the prize for having to deal with the most insensitive nurses in Boston in the last 5 days.

Here is the YSC post:

Hi All,

Surgery was Friday, got back on Sat morning and am doing very well. The deal with my surgeon is like this....she wants me to wait on the regular yoga until the drain is out which by the looks of things may be anywhere from Wed- Friday this week (my birthday!) Have been doing gentle arm stretching and twists and today will throw in some lunges today. The surgery was not bad and my arm is not sore at all just stiff. Husband is convinced that I have a deal going with Dr Gadd that she keeps putting in more bionic woman parts in me with each surgery because I appear to be getting stronger and bounce back faster with each one. I do not know what he expects anyway ~ I like my sleep but have never been good at sitting still.

Most of the issues that I had were nursing mistakes. I was on the recon floor and have to say based on my care that night that I would not do any involved recon at Mass Gen. I have always loved the post op nurses there (excellent) but on this floor maybe they were swamped or had something weird going on. The nurses were ok and responded well to requests but I REALLY had to advocate and pester them for things that should have been done. A flap there? No way. I would not have wanted to be out of it and at the mercy of the nursing staff of the 13th floor that Friday night. The 50ish woman next to me for some insane reason had BOTH knees done, was in constant pain, had no arm strength to move herself around, was running a fever and had the most idiotic nurse trying to put a catheter in......I would have punched her. i felt so bad fo rthat lady and I really wished she had a family member with her that advocated more for her.  She had one of the most loud obnoxious nurse I have ever seen. During that fiasco one of my very young nurses came to look at me and said "Oh you *only* had a mastectomy!" I looked at my husband and then looked at her and said "Um yeah, only a mastectomy?" Let's just say that I am glad she said that to me, because she will NEVER say that to anyone ever again after the look I gave her. I actually handled it well, but my husband was almost positive that he was going to have to take me home after I killed her. I spoke to another nurse that I became friendly with and she told me that the girl who had said that felt really bad afterward and as she was most likely used to seeing people with very bad burns and all kinds of crazy PS and relieved to see someone that did not have it so bad. So it was good for me to realize that yes indeedy there are plenty of worse things happening on the recon floor than a Mx. Later that morning one of the nurses did not flush my IV and then proceeded to try to give me an antibiotic push that blew the vein. She was going to flush it but dropped the saline on the floor and then was too lazy to go and get another one. Anyone that has done chemo knows when the IV is not right (It should not burn) so thank god a resident was there and made her take it out. She was going to try to reset the needle and I was like Hello, I think not Lady!

Another hitch was that after telling my anesthesiologist that I did not want to be on morphine drip, the nurses sure enough put me on one in the recovery room ~I had wanted something less nasty. Next time it will just go on my allergy list as people do not listen so well. I had them take it off as soon as I realized....so that I was able to move around without throwing up later on Sat night. Coming out of anest was great ~ no nausea or anything, but I guess I take a long time to come out. I was not in any kind of pain that required a morphine drip and was more interested in being able to eat and walk around. I am looking forward to the drain out just for sleeping purposes...it does get ouchy but I have not had to take any pain killers since I have been home. The antibiotic that they put me on (they do this now as a matter of course) has caused very bad runs and so my surgeon was like....stop taking it ~thankfully! The incision looks great and yes it is weird having a little boy chest on my left side but am most thankful for the lack of pain and I cannot imagine putting an expander under this...am glad that I did not. Looking forward to doing my yoga soon! Thanks for all the info on what this is like....it is not that bad so far and is WAY better than chemo. Hah! Now if I can just look less lopsided I will be happy!

~climbergirl

SLH

You Rock, sister!

Good to hear that it went well for you.  I had the bilat w/expanders morphine migraine projectile vomiting version. Also had nincompoop nurses. Nurses can make or break you!

I've had so many veins blown by nurses. During one surgical ordeal, I had six blocked in two days, so they finally put the IV in my chest.  One CNA was checking my BP on my IV arm, and was not *happy* with my low blood pressure, so she kept pumping the cup higher and higher, like a tourniquet!

I planned on wearing a sports bra with padding after my implant-exhuming surgery, but my surgeon said that I need to wear a tight elastic "tube top" (Baby Boomer's word) wrapped around my chest 24/7.  I asked for how long, and he said it would benefit me to do it for 6 months!!  He thinks the tissue would attach itself to my chest and be flatter that way.

So I’m going around totally flat-chested. The beauty of bilateral is that at least I'm symmetrical.  Haven’t noticed any skeptical looks!

sally 

Anonymous

HAHAHA.....you girls are tooooooo funny. I love the pads and condome line too...LOL. Geez, remind me not to stay in hospital to long if I don't have to.......sooner I am home the better! Or better yet maybe I should pack some pads and condomes to take with me....hahaha! Good luck finding some tube tops in the middle of winter too SLH! You guys are to funny!

climbergirl

You must be Saint Sally with all those blown veins Missy! Sometimes I have had  nurses that were just stellar, but sometimes you just get those BAD ones.

Flat is nice! 

But me...flat on one side (Borat's Voice) "Not so nice!"

So do tell...what kind of "tube top" did you opt for?  He He. I just know that you are dying to put a maxipad in there. Admit it. In the words of my husband "Who do we have to bl** around here to get a temporary Breast form perscription?"  I mean really.

Still, me no got

~climbergirl 

SLH

Don't even get me started about blown veins!  I hate IVs, esp on the back of my hand.

On the bright side... my hands have always looked like an old lady's, because they're boney with big gnarly blue veins snaking just under the surface.  But since my cancer ordeal and the multitude of blocked veins on my "good" side, I now have one smooth, vein-less (still boney) hand!

I sure wish I would have saved some of those Tube Tops from my teen years.  My 11-yr-old is now bustier than I am! 

sally 

Anonymous

How about those water bras that my daughter was into from La Senza? Just take the water pouch out of the other side?? As far as tubes go, I"ve got an old pair of surgical stockings that if cut off at the widest part could serve nicley as a tube. LOL........I'll have to consider my post-op options!! LOL.......happy hunting!

SusaninSF

Climbergirl,

Thanks for letting us know how everything went! Sorry to hear about the bad nurses. I have had some really bad ones and some really good ones. In general, the older ones are better. I used to tell them, "My veins are really difficult so go find me someone who's really good at this!" This always scared the less experienced ones and I would get what I wanted. I also found you have to ask lots of questions. "What are you putting in my IV?" "What's that pill you want me to swallow?" They've tried to give me things meant for other patients. It pays to be a real pain in the a$$.

About the form, I bought the Amoena Leisure form 126 and wore that until I healed. It doesn't cost much. Doesn't look or feel like a real breast on me but I wore loose tops so it looked fine. There are also special camisoles with fluffy inserts that some people got from the hospital that sound great. I also bought a couple of cotton, front-closing, post-surgery bras (there are several different brands) that I still wear to work out. They are really comfortable.

Glad to hear you're in good spirits and not too much pain!

- Susan

Erica3681

Hi Climbergirl,

Glad you're doing well now and that you survived the bad nursing ordeal. I'm really sorry to hear about that. I was treated at Beth Israel and the nurses were very conscientious. My husband recently had surgery at the Brigham and they were quite good, too. 

Susan had some good suggestions about things to wear until you're more healed. From your post, it sounds as if you'll be going over to Dana Farber. They have a nice little "boutique" there for breast cancer patients. I bought a post-surgery camisole there. I think they also had the "puffy" forms that go in it. The fitter there seems very nice--although I didn't go back there to be fitted for my permanent forms, I think I might stop in there the next time I need new forms. Though it's a small shop, the woman seemed very knowledgeable.

Unfortunately, I'm down in Miami for an extended stay. Otherwise, I'd give you my camisole and puffies--unfortunately, they're in my drawer in Mass. and I'm down here in Florida.

You might also check out my website, BreastFree.org. I have links to online places where you can order the various lightweight breast forms and camisoles. 

Barbara 

Erica3681

Sally,

How are you feeling since your mastectomy? Hope the muscle discomfort is much much better! 

climbergirl

Barbara et al~

Yes I have checked out your fine sight. Went and got a post surg temp amoena form that is just fine for now. It actually looks pretty good under the yoga top. Will deal with the weighted stuff later....the drain is gone and it was not bad in coming out. 

~climbergirl 

SLH

Hi Barbara and all,

I'm doing fine since my implant exhuming. I still have a stiff neck from three years of pain, but the constant muscle tightness down both sides of my neck is gone. And lying down without the weight on my chest and the muscle contractions is such a relief. I'm going to talk to my dr about getting a few more PT sessions and maybe some massage to get the knots out!

My PS told me that I should tightly bind my chest 24/7 for six months (?!) to make the tissues adhere to the chest wall and flatten out.  It's different from having no recon, because my skin and muscles were distended.  He didn't want to take all the skin because the scars would have been almost touching in the center of my chest.

But the binding strap is scratchy, so I'm checking around for something else.  It also makes wearing a prosthesis complicated, so I've been going without.  But when the weather changes and I stop wearing big sweaters and puffy coats, I'm not sure that I'll want to look like a fence post all the time. Who knows, maybe I'll be used to it by then.

sally 

Erica3681

Sally,

I'm so glad to hear the "exhumation" accomplished its goal of getting rid of the muscle pain. The binder sounds like a nuisance, but once you're beyond that, you'll have all sorts of options for breast forms, etc.

I support you a thousand percent in getting as much physical therapy as you can--it made a huge difference for me (my PT, in MA, specializes in breast cancer patients, so her knowledge about the issues helped, too).

Barbara 

SusaninSF

Sally,

I'm so happy to hear that you're feeling a lot better after the deconstruction! 

After I had my deconstruction I didn't need to wear any kind of binding. I'm not saying that you don't need to but you might want to get another opinion. At first, my PS left some extra skin but I asked him to remove it because my wound wasn't healing in some spots. The incision was buried in the extra skin. The muscle never seemed distended, it just went right back by itself. I had a kind of ridge below where the implant used to be but that went away after about six months.

I agree with Barbara that you should definitely look into PT or find a skilled massage therapist.

- Susan

SLH

I think I know why my PS gave me the scratchy binding strap to wear for 6 months...It's supposed to sand paper off any extra skin he left on my chest!

Too uncomfortable!  But today I found a nice soft "trainer" bra at JC Penneys. The brand is Ambrielle ($14).  It doesn't have a cup at all, totally flat, but it makes me look like a grey-haired Keira Knightley!

sally 

OLBinNJ

I had deconstruction and didn't have to wear anything special to bind my chest.  Maybe because I'm not that big- 34 A/B - so the implant didn't stretch my muscle out too much?  I don't know, but my chest on that side went to completely flat, almost concave, pretty quickly.  I think I would just try a sports bra or a bralet for comfort.

climbergirl

Sally,

I am so glad that you have stopped having what sounds like muscles spasms and that the pain is clearing.  Def get someone for massage, anyone that knows about Cranio-Sacral work would be ideal for any kind of shoulder neck stuff. 

Barbara~

Can you recomend someone for post Mx PT that is good/excellent... I am in Boston! Just got back from yoga class and it was not too bad. I should be doing ok in a few weeks.  Happily but ouchily my teacher is really into arm work at the moment. 

Thanks,

~climbergirl 

Erica3681

Climbergirl,

Yes, yes, yes! I have a terrific physical therapist to recommend. She devotes her career to breast cancer patients. I originally got her name from my breast surgeon's nurse liaison at Beth Israel Deaconess. Her name is Nancy Roberge and she's in Wellesley. Her phone number is (781) 263-9977. Feel free to tell her that Barbara from BreastFree recommended her to you.

climbergirl

Thanks so much for all the help and info/site...I will give her a ring!

My chiropractor is Joanne Cancro and she uses some kind of laser technology to release scar tissue and the like with women that have had Mx's so I will be working with her as well. I do not know how soon one can start with that tho....I know that she has has success with women that have had long standing issues with the shoulders and things like that. I will find out the name of it. She is in Newton and is a great chiropractor and a yoga person as well.

One of my fave caregivers!

 ~climbergirl