October 2014 Surgery Sisters

I have a question for those of you with children.  I'm wondering what others have told their kids?  My son has lived through biopsies (I've had melanoma in-situ biopsies and wide level excisions) so he is used to being gentle with me and is helpful and sweet but this new "thing" has him all freaked out.  He's very nervous that I'm going to have surgery and have to be in the hospital and he's asked me several time if I'm going to die...which breaks my heart.  Of course I reassure him that no, I'm having surgery so I can get better.  He's 9 but a very sensitive kid and such a mama's boy.  We have been keeping him on a need to know basis at this point to protect him but when I come home from the hospital, it's going to be obvious that it was a big deal.  I thought it would be better to talk about things after so I can look him in they eye and explain face to face when he knows I'm through it and home and going to be ok.  I'm just wondering what others have done.  He's such a worrier, I just don't think it's fair to give him more to worry about than he needs to.  It's so hard to be up all of the time, ya know?  I feel like I owe that to my husband and my son but sometimes I just feel like crawling in a hole.  It's so hard to reassure everyone else when I'm scared to death myself but I know everything is going to be ok.  It's just a journey and I have to simply get through it.  

hummingbird, I don't have kids of my own, but I'm concerned about my youngest nieces, 6 and 8, who live nearby. I joined a discussion here a couple months ago that might offer some insight:
How to Talk to Your Young Child About This

My nieces haven't been told yet--I think perhaps next weekend, a couple days before my surgery; they're both very sensitive. My own preference would be to prepare children as much as possible ahead of time, but I think a lot can depend on the child's personality and age. I was an adult, 27, when my own mother had DCIS and a UMX. That was before the Internet. I was, of course, worried about the cancer; I was not at all prepared for the fact that she would be coming home with a drain! I think I may have had one quick glance at it, and that was it. My father, fortunately, took care of everything, because I couldn't have done it at the time. That's a long way of saying that perhaps some info ahead of time about some of the odd things to expect might be helpful. But I haven't even gotten that far with the nieces, so am just speculating.

Hi to all the newcomers. Wow, this group continues to grow by three or four people every day. Welcome to the club you never wanted to join.

Scmom, you can make simple but totally effective holders for the drain bulbs. You don't need anything but a pair of scissors and some old tube socks. Cut across the sock 4" from the toe. Drain bulbs are 4" and they will fit nicely in the stretchy toe of the sock. You can pin the "pocket" to your bra or shirt, to a lanyard around your neck, or my favorite all-weather solution, a long loop of dental floss around your neck. Diaper pins are best, but a large safety pin works too. Since drains have a loop of plastic at the top, you can even bypass the drain pockets and (1) slide the big pin itself through the loop of plastic and pin it to your shirt or (2) just slip the dental floss through the loop, then tie it into a "necklace" whatever length you need to camouflage them under your clothes that day. Floss is very strong so it will easily hold four or five drains, even if they are all full. It's also the best way to handle drains while you shower. One time I used flat elastic instead of floss because I had so many drains, the combined weight as they filled up made it uncomfortable on the back of my neck.  

Keeping incisions/drain entry points dry when showering: Buy Glad Press N Seal. My husband holds it vertically while I twirl around a couple of times. Works great and keeps everything dry.

Speaking of drains, as I was about to get in the shower this morning with my usual "dental floss drain necklace" around my neck and the drain site dressing in place, I felt something on my leg. It was the end of the drain! It had come out on its own. I always thought the sutures in your skin at the drain entry point kept the drain from coming out. I took off the dressing and the sutures were still in place. ??? Then I realized all the drain wasn't there. The other times I've had JP drains they've had a 8" flat shoelace kind of part at the end that is under my skin. This time all I saw was plastic tubing. Where was the rest? It was inside me! How the hell were they going to get it out? I raced downstairs and told my husband what had happened and that he should get dressed because I needed to get to the PS clinc. (I'm 10 days post-op and not cleared to drive.) He had taken a couple of Valium earlier for a back muscle problem and though his eyes were open, he might as well have been asleep. He was in la la land. So I grabbed the keys to his truck (my car is in the shop) and took off, in the rain, in a huge vehicle I never drive, in rush hour traffic, to the PS clinic at our military hospital. Talk about white knuckle driving! When I got to the hospital I thought the lack of cars out front was because of the rain. Inside it was like the Twilight Zone. Where was everyone? It should have been packed with people on a Monday morning and instead there were just a few. The PS clinic was deserted too. Then it hit me...this is a Federal holiday so the hospital clinics are all closed. Now what? I had my doctor's phone number so I called (waking him up!) and explained what was happening, sure he would tell me to go downstairs to the ER. Instead he said he had used a different kind of drain this time, there was nothing left inside me, and the sutures only tightened the skin around the tubing like a purse-string so it was certainly possible to pull out the drain without realizing it and without cutting the sutures. He said to go home, use the scissors & tweezers from one of the sterile dressing kits we had to take out the stiches, cover the hole with a sterile dressing until it closed on its own in a day or so, keep taking the rest of my antibiotic and continue to rest. No big deal. Keep my appointment for later this week and don't drive anymore.

Talk about relief! I was thinking I'd end up getting admitted for "exploratory surgery" to find the missing end of the drain. All I should have done was call the PS. There was no need to make the mad dash, by myself, in a strange vehicle, in the rain, to the hospital. My chest hurts from the strain of gripping the wheel so hard. I'm such a dummy. 

Hi everyone I'm. 6 days post op doing great

They sent me home the same day.

My hubby and daughter did awesome caring for me.

The pain was very manageable.

I went back to surgeon on day 3, he removed drains and dressing then taught me to massage my implants into place .....now that's very painful

Has anyone here had to do this technique?

Sandra, I LOVE the ingenuity of the floss and sock drain lanyard - talk about creative! Thanks so much for sharing that.

I wanted to let the rest of the group know that I'm not getting on the bus in October. After last Friday's disastrous, horrible meeting with the surgeon, a relative got me in today to see her surgeon. What a difference!! We are going to try a different protocol, treating the tumor and node with an AI for a month to see if it's responsive. The hope is to get info on the way it responds and to start killing it off. If the node responds we may be able to much a much less invasive procedure than the ALND that I was scheduled for. 

I am actually happy and hopeful today, for the first time since before my biopsies. 

If you don't mind, I'll stay in this group and pull some extra cheer leading duties. Otherwise, tell me to skedaddle and I will! 

Swoobs, I'm glad you're home and doing well but have to say that implant massage sounds like it would hurt. Take it easy.

Sorry - I guess I should be a little more clear. I ordered the ones on Amazon. They are very light and provide nice support. I used one under the seatbelt on the way home and have kept them with me in my recliner and in bed since I have been home. 

Oh Sandra...what an eventful day!  So glad all is well in the end though.

thank you

It went surprisingly well!

The massaging of implants started day 3 and b/c of the lymph biopsy on right side it's making the massaging very very painful.

I time doing it 6x a day with my pain meds

Hello all looks like everyone is doing as well as possible!  Sandra what story glad you are home safely and resting!!  Swoops I never massaged.  I have the tissue expanders should I start with them or wait until the implants get in?  Has anyone used lotion on the skin with tissue expanders?  Oh Hopeful so happy you are getting the care you need!!  You deserve nothing but the best and treated well.  Please stay on.  I need a cheerleader!!  I am a bit of a whimp though so knock me around.... Lol

I went to the doctor today and got my drains out...... Yipeeeee able to take a shower tomorrow.  When I went in to see the PS he said you look wiped out. I said I am!  I haven't been able to sleep well.  I just feel out of it I have this low grade fever.  No redness but just a warm chest.  Not what I expected!  It has only been a week but I am not sure how I am suppose to feel.  Is it waaaay to early to make judgement!  He seems to think everything is ok.  Maybe if I come off some of the pain meds now that he drains are out and I get some sleep that will make me feel better.    I just feel a pity party coming on.....so sad.  I feel like a kid when it comes night time my temp goes up. Does anyone else feel flushed?  I just want to sleep and this all be over!!   Like Sandra and others the least little thing big or small sets us off having been what we all go through. The past is the past and this is a new try.  Just want it so bad and for it to work.  Need to stop using all my energy on how I should and shouldn't feel.  My apologies for such a dreary post!!  You all help so much and thankful for this  page to vent.

Togetherness - this is your cheer leader speaking. YOU do NOT have to apologize for a dreary post or for feeling bleah - especially on this board! 

I think there's a LOT of uncertainty and stress associated with getting ready for surgery, coming home, and recovering. Most of us don't do this frequently, so of course we don't know how our bodies react. Lack of a decent night's sleep certainly doesn't help. 

I hope that now that you can shower (YAY!!!) or have a long, hot bubble bath (complete with a frothy novel or magazine) and sleep a bit better you will find yourself feeling better, your healing speeding up and your spirits climbing up our of the basement. Probably not overnight, but over the course of a few days or a week. In the meantime, just remember that if you're indulging in a pity party there'd better be enough calorie-free, dark chocolate for EVERYONE.

Just don't overdo anything, except the chocolate. Take care. Please keep reporting on the results of your chocolate therapy protocol.

Hopeful, you are one of us and we won't hear of you going anywhere else. I could FEEL your relief in finding a new doctor. Now that you have a plan, I'll bet you feel empowered. Fight like a girl!!!

Heart-shaped pillows: I have two sizes but these are the best. Picture is against standard size notebook paper so you can see the size.

You'll need two of these, one under each arm at first and later, when you are able to sleep on your side, one between the TE/implant and the mattress and the other under your top arm to keep it from rolling forward. Make sure they are thin. Mine are an inch and three quarters at the most and VERY soft. If you can't squish the pillow down at least an inch, it's too thick. Because of their flexibility, they can be wrapped around a seatbelt and secured with a clothespin or binder clip or doubled up to put them in just the right spot on your back that hurts. The other ones I have are twelve and a half inches wide and four inches thick and harder (too much stuffing.) They come in handy for propping my lower arms in the right place when a bed pillow is too big. They also fit right under my chin when I'm napping in the recliner and don't want my head to roll too far forward. Sounds silly, but it really helps not to wake up with a literal pain in the neck.

Swoobs, you are fresh out of a double mastectomy with direct to permanent implant surgery and I am shocked that they sent you home the same day. I had the same surgery as you. It's a HUGE and I was watched carefully in the hospital. So glad you are doing well this soon.

Massaging is something we rarely hear about here. I know it is common advice for women who have cosmetic breast augmentation to prevent capsular contraction, but not common after tissue expanders are put in or even later when they are exchanged for permanent implants. After breast surgery, most plastic surgeons seem to want your chest fully supported and not moving at all at the beginning. Some women wear ace bandages 24/7 for weeks to prevent movement. Many of us are told to stay in snug surgical bras the first couple of weeks. I'm not surprised it hurts to massage them. You just had a BIG surgery. There are LOTS of sutures under there and muscles that have been cut. Everything is swollen and "raw." Additionally, since you have lost the sensation in your chest, you can't really tell if you are doing it too hard - unless it hurts later. Personally, I think if it hurts, you shouldn't do it. Your body is trying to tell you something. Of course, I'm certainly not a doctor so maybe I should keep my opinions to myself. I'm 10 days out from my last surgery and cannot even imagine how much pain I'd be if I massaged my new implants...and although I had a boat load of pocket work, I don't have a fresh double mastectomy to deal with too. Girl, I feel for you. 

In a few weeks after your incisions are healed you might want to use scar-away strips. I used Bio-Oil when I had a TE to keep the stretched-to-the-limit skin feel better. I didn't do massage, per se, but did gently rub the oil all over my skin. 

Of course you're going to keep up with this group, FHG; you've been inducted and you can't leave now. 

I'm sorry your surgery was postponed - that's a tough adjustment to make. However, I agree with OS - it probably won't make a difference, but ASK. I was told that if my surgeon felt there were any concerns about waiting they would have made it plain. However, I never count on MDs taking everything into consideration, so do bring it up.

Hang in there!