NOLA in September?
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Tamara, I added your date dear! Welcome to the group!
Oooo Betsy, you will feel better once that thing is drained!
Okay, should I change the notes above to contact NoWhereGirl rather than TimTam for the picture forum? Do we have a confirmation on that?
Wow Eve. I wish I was with you and Nordy in your dream, WITH OUT KIDS, riding street cars! Oh wow. That woudl be so fun. Actually, I was with Nordy, in Portland, with 3 of our 4 kids, and I can attest, nobody got lost!
We did, however, eat more Voodoo doughnuts than we should have, oh well!! In your dream, were you eating beignets? That would be the NOLA version of the Voodoo doughnut, LOL...0 -
Nordy--you are too sweet!
On the stage 2 recovery...I've heard a lot of conflicting answers previously about Stage 2 being harder than Stage 1 (bruising etc,) and then others say it's a snap. I know everyone is different (I'm actually having a hard time recovering from Stage 1...I'm at 1 month today and not close to being ready to go back to work!). I"m just trying to determine what to generally anticipate...do you get drains? (Breast, hip, both?) How long do you need the girdle and bra? Are you really swollen? When do you start feeling like your "new" self?
Thanks ladies!!!
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@ Eva, your photos are beautiful! I wish I had your guts, gurl!
@ Chellehump, thank you so much for the positive thoughts and prayers!
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DJ.. I think you are getting conflicting info because everyone's stage II is different... I had a lot of revision at stage II because I had had a GAP and DIEP flap so lots of revision... but it was still easier than stage I... There was more bruising than stage I because of the lipo, but my body bounced back faster, if that makes sense. I also had a butt lift which was sort of uncomfortable for about 5 days... After all of this, I found the mastectomy to be the hardest to recover from... My GAP surgery portion was easy for me, and my DIEP portion was tough for about a week... I think after stage I when I looked in the mirror I saw lots of bloody scars and was swollen and distorted ... as you know that improves over time and all goes away. Stage II is nothing like that at all... all the scars are much "neater" and the swelling is sort of a general swell... and subsides.
And yes, drains, but the hip drains only lasted a week, all others were gone within a few days.
I was back at the gym 6 weeks post op.
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Everyone is different but this was my experience. I had a unilateral GAP flap for stage 1 but had revisions on that and on a previous DIEP reconstruction for stage 2. I had basically no pain with stage 1 and was out of work for 4 weeks (until I got rid of drains). I was walking around NOLA as soon as I was discharged from SCSH. For stage 2, my pain level was about 3 on a scale of 1 to 10. I felt tired and sore and didn't feel like walking around NOLA but I felt better VERY quickly and I was back at work at two weeks. For stage 2, I think I had at least 3 drains (breasts and hip) but they were out before I returned home. The number of drains will depend on the work that needs to be done. I wore the compression girdle for 2 weeks and then got rid of it. I wore the bra for longer because I like it - still wear it often at almost 7 weeks post stage 2 - it is comfortable. I didn't have a lot of lipo and not much swelling -( I think still very slightly swollen around my hip). I feel fine but I know the reconstruction is still softening and settling in.
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My experience post Stages 1&2 has been different as well. 4 weeks after Stage 1 I started chemo, so I didn't really 'recover' from Stage 1; I didn't get to feeling normal before starting chemo. Now with Stage 2 I went into it 3 months post chemo, still not feeling myself. And then about 5/6 weeks post Stage 2 I was diagnosed with hypothyroidism, which explains much fatigue. I would still say that Stage 1 was much harder on me, as I had so much more done. Plus, for me, I didn't have as much fear with Stage 2, which I think helps. I'm also lucky to be a stay at home mom, and I've been able to rest when I feel like it.
Ah, Betsy! A good ol' seroma! I'm sick of mine. I've had 3 aspirations: 210cc, 140cc, 79cc. So at least it's going down. Right now my LE therapist is working on me to see if she can get things draining and avoid aspirations. My breast has firmed up from the seroma. She's using both a cold lazer and myofacial release, along with manual lymph drainage, to get things moving and softened up. I hope it works! I wear my black surgical bra 24/7 since surgery; that's all the compression I've been told to wear.
Eva, beautiful photos! I hope I will take some after photos eventually. I envision a black and white in my bathroom.
Regarding Stage 2 with Dr S. I was told that he has Stage 2 scheduled on Wed or Thurs; and with any of our Drs a post op appt is optional. I scheduled Stage 2 on a Thurs and had a post op on Monday. I was glad to have those few extra days for recovery (with my sister doting on me), as I had a little extra peace and quiet to rest rather than rush home to the routine of being mom. I was also glad for the post op appt, as I had one nipple done in clinic! I feel a lot more reassurance having a post op appt.
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Paula... Laura told me I could leave it or have it aspirated... I said I'd like to aspirate once and use compression to see if I can avoid a second aspiration... she agreed with that... So I will have it aspirated and then she told me to wear a sports bra for a week using a pad for extra compression... Might look a bit odd as its my inner upper right breast towards my cleavage... outside my bra line which explains why I have it I think... She also said it looked like a few pockets of fluid in one area, so it may take a few jabs to get it all.
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I had bilateral MX with GAP in Nov. I do remember recovery being longish, like 6 weeks. It was until about 9 weeks I really started to feel better, not as tired, not as tight, etc.
Because one flap failed I had DIEP 15 days ago. I returned home last week and am already back at work. No pain but tired, and ya know I just decided I could not have any more down time. Everyone's recovery is different but I do think being active and doing things, whether work, projects, etc. is important to recovery.
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Had a unilateral reconstruction and I have to say that Stage 1 was a cake-walk compared to Stage 2 for me. Very little pain, just the after-fatigue from a major surgery and anesthesia. I had taken 4 weeks off work and really didn't need the last one. Had take 3 weeks off for Stage 2 and needed every minute. VERY painful for me, and with 3 surgeries (mastectomy, Stage 1 then Stage 2) all about 3 mos apart, it really beat my body up. Discovered I wasn't 32 any more and can't bounce back like I used to. I went back to work at 3 weeks Stage 2, but I am still only about 75% and need much more rest. Planning a small 10-day mini-vacation in the sun and warmth in hopes that will help me turn the corner to reach 100%. Probably doesn't help that we are in the throes of converting our 12,500 sq. ft. Queen Anne brick 1895 house into a bed and breakfast and those details are enough to put one into a straight-jacket to say nothing of the construction mess! LOL! FWIW ...
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Maggie.. I think because you had a UNI and had GAP flap, which I found to be easy and painless, the stage II for GAP is a little more of a big deal because of the butt lift.
If I were to rank the pains and recovery misery in order from hardest to easiest, it would be:
BMX (range of motion isuues and feeling like 20 pound balls on my chest)
DIEP (mostly due to back pain from hunching over)
Butt lift (just very bruised feeling for about 10 days)
Love handle and leg lipo (bruised)
GAP flap (painless, except for drain duration which was 8.5 weeks)
Breast revisions (painless)
And throw drains into all of that. I also had lots of anesthesia with 4 surgeries between July and November... my body was the most tired after stage I and Ib.. not so bad after stage II.
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I'M FREE!!! Dh pulled my drains (8 weeks out) this morning, woot. I'm off to take a shower with nothing hanging, double woot. Can't wait for my butt fix on March 15. Onc visit yesterday and all is good. This is a happy Thursday. (c: Take care all.
Thanks Betsy!
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Love love the last drain gone day! So freeing, feels like all is right with the world for a day! I think I skipped around my house. Yes, skipped. Congrats! Enjoy this day!
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Betsy: A relaxing warm shower with no bothersome restrictions, and dressing without drains, makes for a REALLY Good Thursday! Enjoy!!!
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Adey has lost her last drain
Enduring them's been inhumane
A shower's a snap
Without all that crap
Her relief is emphatically plain
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Ha! True that EvaM. Thanks. (c:
May you not be as juicy!
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For DJ and others in the Los Angeles/South Bay area,a FORCE announcement for BRCA+ and those at high risk.
SPRING MEETING REMINDER!!
Our SPRING support meeting is just around the corner.
Sunday, March 4th
1:30 pm ~ 4:30 pm
The Cancer Support Community - Redondo Beach
(formerly the Wellness Community)
109 W Torrance Blvd #100
Redondo Beach Pier Shopping CenterParking will be validated and we will be serving refreshments (not lunch).
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Yay no drains... !!!!!Congrats.
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Betsy, I think I have a seroma where my right drain was. Did yours bother you? Mine doesn't although it is very weird. I wonder if I can wait until my surgery in march to have it aspirated. Do they recommend draining right away?
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Adey: Hurrah!
Eva: Gorgeous!
Sandy: Are there meetings to learn more about cancer risks? I've never heard of FORCE and so surprised everyone is so educated about cancer. I've always wondered about Hodgkins Lymphoma which I had 20 some years ago and the risks of breast cancer.
For those with reconstructed nipple, how long did you wear the brown nipple protector? I am 4 weeks post op. I took it off yesterday but nipple seemed to get smashed a bit. How flat does the nipple get and when does it stop shrinking?
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Michelle, they don't recommend draining right away if it's not bothering you. I wanted them to tell me what to do---not leave it up to me! I was quite swollen, though I figured it was regular post surgical swelling. I ended up having almost a cup of fluid drained. I didn't ask how big mine was, but it was surface (vs very deep) and about the size of my hand. I had it drained 2 more times because it was uncomfortable. I also started worrying about it not healing (forming a pseudobursa) if that much fluid was in it. Thankfully it's gone down, but not gone. Right now I'm seeing my Lymphedema Therapist 2x per week to see if manual LE massage and cold laser therapy helps it drain. Today she taped me for the weekend. Every time you get aspirated they warn you of the risk of infection. The cost of ultrasound guided aspiration (at least the first diagnostic visit) is nothing to sneeze at either. The aspirations so far are very worth it. Unfortunately, there doesn't seem to be a consensus on treating seromas. The office said some get them drained, some don't; some go away, some don't; some are uncomfortable, some aren't; some get drained only once, some every 5 days, some every 10 days. Argh! Since it doesn't bother you, and if it doesn't seem big, I might err on not draining and just have it addressed at March surgery. Mine was/is large and I have no surgery in the near future. Be sure to talk to the doc about it! In case they tell you yes, get it drained. Mine was very visibly waterbed-like. I sent a little video in!
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And mine is not nearly water bed like, but with no surgery in the foreseeable future I am going for one drainage and then compression to see if I can avoid it re-filling. Michelle, with a March surgery, i would just wait unless it is hurting...
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DJ, I remember at about 5.5 weeks after stage 1, I felt I "turned a corner" and started feeling better. Don't dispair! It will happen soon I am sure.
And Betsy's right, everybody's stage 2 is different. I had a lot done at stage 2, but for me, it was still a million times easier than stage 1. You ARE bruised from lipo, but somehow, that to me was not as debilitating as stage 1...
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Thanks for the responses girls. Like I said, I am sure I will have a thousand of them as time nears. My date is August 17 at Fairway for a DIEP and Hip Flap with Dr. Marga. I will be getting flights, and housing soon. I have never been to NOLA. We will come a couple of days early.
You are all the most courageous woman I have ever "talked" too. Thank you so much and I am sure I will be bombarding you with questions this summer.
Thinking healing thoughts for all that need it at this time.
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Eva - love the photos and the limerics! Keep them coming!
Eve - i love that you had that dream. It sounds like fun, except the part about losing our kids... I would be losing my mind! I like Spring's thoughts on going without the kids (you know I hate to leave them, but it's better than losing them in the crowd), getting beads and eating lots of beignets! I don't think I ate enough of them when I was there last month!
Aspirations... I lost count on how many I had. I was just super juicy in the hip donor site area. I never had to have an ultrasound guided aspiration. You could visibly see where the pocket of fluid on each side was. My local PS just stuck a needle in them and I helped "push" the fluid toward the needle. The first time she just kept draining it and draining it... I thought it would never end. Then it gradually got less and less... Well, that is after I had new drains placed for a couple of weeks! But, like I said, I was very juicy!0 -
Nordy- Scary! I'm juicy too, hopefully not as juicy as you! (c: Drains out yesterday and six weeks until stage 2. Marga said no need to aspirate unless painful. My fingers are crossed.
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Adey--where is your stage 2? NOLA or Charleston?
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Adey - Yeah, your husband is brave to pullthose drains! Relish your shower today.
Michelle - when I had my lumpectomy I had a seroma for almost a year and then I took an airline flight and it shrunk! If it does not hurt leave it, your body will reabsorb some of the fluid an they can deal with it at surgery.
Surfagirl - I have lots of info on post HD risks and follow-up care. There are guidelines published as it has becoma quite a hot topic in the oncology community. We are truly the first group of cancer survivors to live long term and all of the sudden we all present with the same late term effects. PM me if you are interested in more info.
Eva - There is such a lovely lady
Who is in the NOLA line waitingShe keeps us all smilingwith her words she loves writingwhile waiting for her new breasts!0 -
jeskachi- March 15 in NOLA. I would have had to wait until May to meet up with Marga in Charleston, NO WAY! (c:
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need2new- It is seriously easy and painless to pull the drains. Snip the threads that hold them and they slide right out easy breezy. But I must admit he is a very good nurse to me!
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okay so today is one of those days for me. I just got in a super duper hard workout, one of the many since early January when Dr. Marga said i could start. I go to weigh myself and my scale just keeps creeping up instead of going down I know that there are far worse things to whine about...hello...i don't have cancer anymore...but it is just one of those days and i just need to vent. I have gained 10 pounds since my whole surgery fiasco started last May! I am so pissed off. I cannot wear any of my fav clothes and i have no desire to buy new. I am sick of everyone saying but you look great. well...i know i don't look horrible but i also would like to get back to what i am used to. PLUS...my body is all weird looking right now with the indentions out of my hips. I used to be able to shed weight like nothing right after having a baby. wth...i guess being 42 is different than being 37. boooo hooo.... Again, i know there are much worse things in the world but i just knew i could vent to you all and you would listen. Okay, i feel better. now i have to clean my house:)
Happy Friday!
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