May 2016 Surgeries

tsoebbin - I found that if I used that wedge pillow with the arms and wore slippery pajama bottoms (thank you to this site) that I could get up on my own. It was the transitions that were the hardest and painful but once I was vertical, I was ok. I didn't need help it was just slow. That seemed to get a little better every day. I also found that moving my arms to do normal things while following dr orders helped with the soreness. My chest was pretty numb (and still is) in many areas including around to my back and both armpits so that didn't hurt that much. What I learned was that most of my pain was from the alloderm used under my implants and where that is sutured to my chest. It takes almost 8 weeks to get established and heal so there is still tightness from that. If you are delaying recon, you wont have to deal with that. The drains were tender and when I stripped them it was kinda painful - there were 2 on each side - 1 superficial and one deep. The superficial one was more painful - again, you may not have 2 on each so that might help a lot. My husband made sure I took pain meds every 4 hours the first night I came home but after that I handled that myself. Hope this helps you in your planning:)

I could see that with the DIEP since your ab muscles can be involved and the incision is pretty long. Make sure to get your post-op exercise sheet when you go for your pre-op appointment. It might be able to give you an idea of what your limitations will be. Mine was limited by having the alloderm and the implants so you may not have those issues this go around. I do have less ROM on my bad side where the nodes came out and that's where my PT will be focused. It's tight and there is some cording but feeling that PT will get me back to normal, or as normal as possble since I will be doing chemo at the same time - whooppeee:)

Post-mastectomy hilarity ensues:

Me to 13 year old son: Do my boobs look even?

13 Year Old: (Without looking) Yes.

Me: You didn't even look! Look at my boobs!

13 Year old: Nooooooo!!!!

LOL!

My poor teenage boys. Well, at least I'm demystifying breasts for them.

tsoebbin, I did not have reconstruction, and no SNB because mine was prophylactic. Although it takes several weeks to heal, that first week is super important to rest and care for yourself. I had 24/7 care that week and, while I did not need someone at all times, it was really good to have them there. My surgeon wanted me walking, sitting up, getting myself up, doing a few post mastectomy stretches (super important to do if they give you clearance to do so. Mobility comes back only with the stretches). I had help with drains, shower, getting drinks (super important to stay hydrated), getting things I needed, cooking, cleaning up after the kids.

Good luck and take it easy. This is your time to be kind to yourself.

Thank you to all for your replies to help me better understand what help I may need post up. I have read everything I can get my hands on but hearing it from those that have "been there, done that" is priceless.

Since I am having surgery on the 29th I will be home from my overnight stay at the hospital on the 30th. My husband will take Wed-Fri off. Then comes the holiday weekend (US Independence Day) and he will go back to work on the 5th. My aunt is coming during the days on the 5th and 6th and a girlfriend on the 7th and 8th.... then it is the weekend again do DH will be home.

We have another friend that will be on call for my husband the first 6 days so he can get away when he needs to.

Work, neighbors, and friends want to bring meals. At first we said no because my husband cooks and i can pre-stock the freezer but we have been convinced to enjoy others great cooking every 3rd day or so for the first 2 weeks. We are happy about that and very grateful.

2 weeks from tomorrow. Yikes.

GreyKat, thanks for the encouragement about the underarm sensitivity! I have nerve damage and underarm hypersensitivity too and it's so painful it keeps me up at night when the arm rubs against the sheet. I'm only 2 weeks out but I've been told I need a referral to a pain clinic and I will be discussing with the BS what they can do for me to regain use of the arm.

tsoebin, I had BMX without reconstruction. I stayed in the hospital 2 nights. When I left, the took out the drains. The first week I couldn't do many things. DH and the kids were cooking and cleaning. For getting our of bed I was using my abdomen muscles. I could use the bathroom without help, taking a shower felt like a victory.

Just take it easy and don't hurry to do many things. It's painful.

I was able to put on deoderant today for the first time since surgery

This evening I will be joining a group of local BC survivors for a walk around Cape Henlopen State Park. This is the first time I have participated in their activities and hope to find some women I can connect with. I also hope to get some advice about local oncologists. Mine is 2 hours away and is completely hands-off (no testing, not monitoring bone health, etc.), saying that that is up to my PCP. I'd prefer to have an oncologist who will watch over me closely at least for the first few years and is more familiar with lobular cancer than my PCP.

MoreShoes - I'm sorry about the rads, and hope you will make it through without any problems. Does the hospital have a place for you to stay if you can't go home every day?

@Grandma - haha yes! I was able to start using deodorant just this last week (both my surgeons said no lotion, no deodorant, absolutely nothing on the skin for several weeks until incisions heal) - well my left is still scabbed and random bleeding is still happening (little amounts) but the screaming underam pain was much more tolerable, so I was finally all "seriously it's getting hot and I am so sick of being stinky!"

Which is a nice way of saying I smell better now, lol. The things they don't warn you about beforehand... like no deodorant for weeks, not even baking soda or cornstarch or whatever else people use.

@MoreShoes: hugs.

@Tsoebbin - prepare for no deodorant! See what we've learned the hard way? Buy some nice perfume to spray up on your hair or clothes and stay out of the heat, lol.

Natty B and Raven, that is so funny about the boys! I have my 12 year old daughter to help me. She just started wearing bras last year. So she feels very mature and "in the know" when I ask her how my foobs look.

Nattyb and Raven4mi that is so funny. Boys. The more babies thing has me hollering over here.

Moreshoes, no you are NOT doomed anyway. Sorry you have to go so far away, that is added stress. I agree I do too much and pay for it later. Is the hypothermia part a trial?

tsoebin My first week at home, I felt so helpless, but got better each day. I was even in the hospital able to wash up, bathroom etc, though slowly. So let your body heal, but if you can have help at home the first week or so, get it.

Grandma3x that sounds great. I don't know what I'd do without my local support group.

Great news, myToyStory2! It does seem like the steps forward are few and far between, doesn't it? Glad you got some good news!

myToyStory2, I'd be more inclined to use the analogy of getting lost in the woods after accidentally losing my hiking trail than "scenic detour". Harumph.

Thought I'd take a chance and post here, not sure where I should post now.

I'm a little over 4 weeks post op MX. Going for my first fill later this week. Met for the first time with my oncologist last week and will be starting Tamoxifen soon. I'm already taking Effexor 150mg, for prior depression/anxiety. Hoping no SEs.

I seem to be really weepy, irritable, angry and depressed, and not myself.

My Mom had breast cancer, and she lived with us throughout her treatment and I was her caregiver. She passed away approx. 4 years later (metastlicized). We had a "mixed" relationship, don't know how else to put it.

Anyway, I feel like in some way I'm back in time going through it all again.

My BFF doesn't get it, my hubby probably thinks I should be happy now that the surgery is over and went well.

I don't see me making it through this and being "myself" again.

What should I do?

Thanks in advance :

Bonniebleu - If I had to go through it once with my mother (with whom I don't have a great relationship but I have shown up and done the caregiver thing through surgeries and disability because she's my mother) - and THEN had to go through the same thing by myself I'd be overwhelmed and probably stuck with a lot of fear about things ending up the same way, or having the same complications, or whatnot.

Also, I get really angry when people tell me how I'm supposed to feel or supposed to emotionally handle something, which is to say when the "Empowered" "Pink" crowd gets on their soapbox and starts talking about how cancer has empowered them in whatever way, I get frustrated. It is NOT fine and it is PERFECTLY ACCEPTABLE to be NOT FINE about all this and to be not fine for MONTHS if need be. You've got to realistically grieve your old body or old life in order to accept the new one, and I hate it when anyone - spouse, well-meaning friends, the media, the pink crowd, whomever - pushes us to "stay positive" and insists that if we're not looking on the bright side of this that we're somehow doing cancer treatment wrong.

So I think it's understandable that you're overwhelmed/angry/bitter/frustrated/weepy/wanting to yell at God/punch pillows/go back in time/escape somehow/pretend this isn't happening/be left alone/whatever. I think you've got to let the trauma of this diagnosis and second trauma of the surgery pass emotionally before you start judging yourself for not being "fine" enough. A number of us on here commented about having bouts of weepy moodiness the first couple weeks after surgery from all the stress that had built up beforehand and the physical trauma and often frustrating or painful changes that came about afterwards. It is a lot of process all at once.

That being said, because you said you've already struggled with depression in the past (no judgement here) it sounds like you might benefit faster if you find a therapist who specifically deals with cancer patients. My cancer center has connections to cancer-therapy people, maybe you can get some names or direction from your doctors or nurses? At any rate, this is a hugely emotional thing and it totally upends your life, your body image, your sense of self, so please don't be hard on yourself for not being "fine" enough.

We all take the time we take, and as long as we keep trying, that's darn well good enough.

We all end up changed "inside" and that can be scary given all the physical changes we are forced to face, but it doesn't have to be all bad.

Hang in there.