Moving On......After the Flap
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Great weather news, Nihahi!
Sbel, poor Aubrey but good on you for offering your precocious girl the cup. Jerry sure looks happy in that photo.
Hi, Tammy! No worries for those not checking in often.
Goldie, I had iron bra for the fifteen months I had expanders after bmx. The pain did ease some over that time period. I did NOT have it after DIEP which was in July. I do get nervy sensations in my boobs, not my rib cage, from time to time but it's not a big deal at all. I hope your pain is relieved, too. I personally wouldn't listen much to women who haven't had DIEP, like Nihahi said. I read of lots of women who are uncomfortable with expanders or implants; not so much for flaps.
Kind of a discouraging day. Hubs lost out on some opportunities this week. Time is ticking. Some things have to change soon. Also, my brothers and I have come to the conclusion that we have to make my parents move to a senior facility after my mom flooded their rental home for the second time because she plugged the sink, turned on the water, forgot and walked away. Their irate landlord called my brother today. He's done. My dad, who can barely walk, insists he's a good driver but he isn't. Both of their memories are fading. Dad will be 88 next month and so far refuses to go to "one of those places to die." I understand, but that is the best option. They say it's too cold up here so San Diego near my brother it is. No other idea is working out. Time to call them.
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Nihani, you think the OR report would give information about the nerves? I didn't even think they were taken into account during surgery, and that is why so many women end up with various forms of Post Mastectomy Pain. I will try to get my hands on the OR report, but at this point I am going ahead with my DIEP because I believe it will help me. There are many positive theories on diep and it helping women with discomfort after mastectomy, plus I hate the implants. I think you are right. I have to stay away from Google, and stay on the path I have chosen. As far as the nerve blocks. I, like SBE, have more of a discomfort, or sensation then pain. It's not something I would put myself through regular nerve block injections for on a regular basis.
BTW, thank you for you input too, SBE. I think like you, have a tightness sensation, but I also have very uncomfortable implants on top of that. When they are out I hope to feel at least 50 percent better.
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I hope the "sleep cream" works for you, sbe. Sorry to hear little Aubery has a cold. When I was little, I used to catch every single bug that was going around, but since turning 20, some how my body has been able to let the bugs go by... I used to feel invincible, until fbc hit me. Thanks for thinking about me, nihahi. The bitter cold weather is gone but the rain is here. I want to go out and have some long walks soon, being lazy lately. Slumber party, dragon boat, fun stuff.
Goldie, I never had expander/implant and my flap surgery was a little over a year ago. On the fbc side, it still feels different from the prophy side. For a long time, on the fbc side, I felt pain under the arm where the nodes were taken (can't even remember when the pain went away). Right now there is no pain nor serious discomfort, but just not the same as any other part of my body. It has been less noticeable over time. Nihahi is right, your ps would have a better handle on this.
Xross posted with Jeannie. Really hope some good news coming your way soon. (((((jeannie)))))
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Marty, I was on a dragon boat team for a few years until I developed chronic tendonitis in both upper arms, and had to quit. Still remember those warm summer afternoons on the water, and how much fun it was. Took part in competitions too, and miss it, especially the social aspect. Enjoy!
Goldie, I can echo what Sbe and Nihahi said. Since DIEP I am much more comfortable than with that TE. Now and then I'm still aware of a little tightness, but it is due to the rads, I'm sure. I can live with it.
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goldie....I hope you feel a whole lot more than 50% better!
jeannie...aging parents are one of the hardest phases of life. Aging parents who are in denial of failing health/competency....even harder a situation. I will be "selfish" and say that I'm grateful your brother might have a larger "role" than you, in arranging/looking after things...you have more than enough on your plate. Sorry to hear about the job situation for hubby. We all keep hoping for positive news soon.
Hang in there Tammy...."April showers bring....remember!"
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Goldie... My iron bra is definitely better with flap. I have some tightness sometimes but nothing like with the implant. I blamed my iron bra on radiation and CC of the implant from that. Hang in there and go for what you want.
My nipple is 3 days old and I'm afraid it's lower than the other one. Do things change when swelling goes down? I am very swollen becuase he did a lot of fat grafting too.
I went to work today because we had an open house for a project we did. Boy, I'm tired! Thank goodness it's Friday!
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Mammalou, I was quite swollen after I got my nipples. (Lipo to break up scar tissue, cauterizing surface vessels). I would wait and see. Fingers crossed!
Hubs is encouraged because a new crop of opportunities appeared today. I am encouraged because I spent the afternoon with two bc friends getting favors ready for the "fishing" fundraiser that is coming up. Nice distraction and nothing beats being with bc sisters sometimes. I haven't been able to reach my parents by phone yet. They probably left the phone off the hook again....sigh. They live in California. Thanks for being my cheerleaders.
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jeannie...I've been thinking about you and "ageing" parents most of the evening. It is such a common "mindset" that a senior living or care centre is a negative move. (not meaning you think it is). I'd like to share our family's experience. After my Dad died, my Mom lasted a year at home alone, then for safety reasons, had to move to a care facility. It was the same facility her own mother had been in for years, and where Grandma passed away, so......not a lot of positive vibes!!! One of her sisters, with more advanced MS was already a resident. We were all worried about Mom being depressed about the move....turns out, it helped her bloom into a real social butterfly! Granted, she was determined to have a positive attitude, but the family joke for years, was .....better call Mom early, because once she's up...she's too busy to answer the phone! Often, when I would call her, her response was....I've only got a minute...I'm going to "X,Y,Z". Another sister, stayed in her home far longer than she should have, and we saw her have a much better life once she moved to the same facility. (Yep......3 sisters, on the same living unit in a care facility! What I'm trying to say is, the social aspect of care facilities can be a real plus for quality of life, in ageing parents. Maybe that can be brought up when you talk about it with your folks.
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Nihahi, what a lovely blessing to share your story. I hope it's an encouragement for you, Jeannie. And we'll be praying for the perfect opportunity to come your husby's way very soon. Where in California do you parents currently live? They'll love San Diego. Never too hot or cold!
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Thanks, Nihahi. My mom has friends at the local senior place near them so she is well-aware of the social blessings there. My parents have put down payments there several times but my dad changes his mind. His life there wouldn't be so different--read, watch TV, sit outside. If he didn't whine too much when my mom left the apt., she would no doubt enjoy the social aspects. He lives in pain, unable to do the things he used to, his speech isn't very clear, all from 2 major strokes and probably smaller ones. He's been a wonderful dad and husband but he's not a happy guy anymore. My mom is very attached to their "stuff" but in their two moves in the past eight years, we have winnowed it down. We would still have to, what? Hire an estate agent? This is hard. I love my parents and know I am blessed to have them.
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Hi Ladies,
I was wondering if anyone has experienced some hard small lumpiness across the flap breast mound and chest wall above. Also, a little soreness too. I get nervous about possible recurrence. Thanks for any info.
Oceana
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Goldie 10 years of iron bra gone with DIEP. You are in countdown mode now. Perhaps it is time to refocus on expecting a positive outcome. Remember - your mind is your best friend or worst enemy and you get to choose.
I won't say all has been roses and without pain since. Lots of things to work through but I am trying to actively work through all of them. Often I try actively to stay blissfully ignorant to hold onto a positive outlook. Sometimes I disappear from these boards just for that reason.
Jeannie I so feel for you. We cared for 3. My mother dreaded the home but would move to independent living and on to assisted. After hospital stays she would end up in skilled care and lived it. Thought she was at the spa with every need met. Never would believe that she was actually in the home she so dreaded.
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Thanks Marty. You are right about staying away from any negative thoughts, or energy. Quick question. Was your iron bra from capsular contracture, or did you have it from the beginning, right after our mastectomy?
Jeannie, elder care and all that goes with it is exhausting and emotional. We did it with my MIL and it was difficult, but I am glad we were able to be there for her.
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Hope the phone call goes well today, jeannie. Maybe your Mom's "contacts" can dig up a buddy for Dad, and once he's on board...might be good to go??? It IS hard to watch our parents age and be in poor health. I wonder if it's also connected to the awareness it brings to us, of our own aging and "someday it'll be us" thoughts???
What is it with "stuff"???? I've come to realize that purging of "why the heck did I hang on to THIS" is an on-going project. Anybody want a pile of cooking magazines....circa 1990's???? I mean, sheesh....who cooks like that anymore !!!!
goldie...per ALWAYS...marty is spot on....time to refocus on the positive. No one has an easy peasy recovery, but often true recovery requires a mental reset too. I know you'll get there, too.
oceana....wow...5 years out from your flap...that's wonderful! Are these areas of concern ones that have been around for awhile, or new???? If new or changing...I'd certainly say get them checked out! If they have been with you...what have the docs said about them previously??
It's a beautiful sunny morning here today...I'm going to follow marty's plan of some blissful ignorance and go play...
Hugs to all.
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Nihahi, as far as stuff goes, my mom attaches memories to it, thus making it painful to let go of it. I'm sure I do that, too, to a certain extent. I haven't talked to her yet but I will. Enjoy your sunny day! We have more rain today. I feel so badly for the mudslide workers (including the dogs!) who have to slog through it all, let alone the families.
Goldie, of course Marty's words were true, as usual. We can talk ourselves into bad places so easily. I think you are going to feel much better after DIEP and be happy with the result. You do have to drink that glass half-full idea sometimes, as you know. For me, it feels so much better to be positive than negative. I'm always working on that.
Sbel, my parents live in Murphy's, CA, in the Sierra Nevada foothills, north of Yosemite, south of Tahoe. It gets quite hot there in summer. If they move to San Diego, their summers would be quite hot, too, as they would live in or near Chula Vista which is east valley. My brother says he would drive them wherever they want to go so they could easily escape to the cooler coast. My dad rarely wants to go anywhere, though.....My brother is semi-retired. My niece, daughter and brother-in-law also live in the San Diego area and we lived there for three and a half years. It's a great place to visit, for sure!
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Thanks for your thoughts, Marty. I know my mom would love a senior residence. She is so isolated at home right now. Hopefully we can make it happen soon.
Deb, I'm sorry things have been so tough for you. You are a survivor of many things. I have been keeping a list most days of things for which I am grateful, some big, some small. It helps to change my perspective. As for your MO, I hope you find one you can relate to. Some women try different AIs before they find one w/o so many SEs. Maybe that will work better for you. Just yesterday my bc friend told me taking her antidepressant gave her a boost of energy. It is something I am considering. Can you take a walk today or walk around the mall or something? You need some happy endorphins! Oh, I see it's early evening for you. I know with your fierce determination things will eventually get better for you. Keep hope alive! Hugs.
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Jeannie... We have a vacation home right above Arnold, which is right above Murphy's. We go to Murphy's all the time. It is such a cute little town. I get all the things you are going thru with parents, we are currently going thru trying to make sure my inlaws can take care of themselves properly, they are 95 and 90 and very stubborn. It is a very sensitive thing to talk with them when they starting losing the ability to care for themselves.
I'm reading the book, Picking Up the Pieces. It's about moving forward after cancer. I know I'm doing a great job of functionally moving on, but emotionally, not so much. Part of the problem is the 7 surgeries I've had and the regular scares of recurrance. I'm thinking that after I get next weeks benign biopsy results( positive thinking), I can truly get a break from all this stuff for awhile.
My latest fat grafting looks very ugly and the nipple is very large. I'm feeling the post surgery blues just looking at it. Uggg.
Bosom.. Hang in there. I truly think the doctors are just in denial half the time over side effects. I don't get it. Either they don't read as much research as we do or they just don't want to admit the SE. Very frustrating!
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Goldie - sorry for not responding sooner, but have been out playing with my guys. Walked 7.2 miles today. Not sure the legs will work tomorrow, but vacay is great. Not sure if this answers your question, but hopefully this might give you perspective. My MX were 3 months apart, then my tissue expanders were place about 3 months after the 2nd MX. The implants were placed about 6 months later. I really do not remember any iron bra feeling at that point. The capsular constricture began about 6 or 7 years later along with very minor silicone leaks. I really tried not to freak out (remember this was a time when they banned the use of silicone implants for all but bc patients). At the 13 year mark, the implants were replaced. It was then that the really significant cc began and the iron bra moved in with a vengeance. No matter how difficult it was to live with, I never knew there were other options so I went around with a virtual strap cinched around my ribcage for 10 years or so. Heck, I didn't even know there was a name for it until my doc asked if I had it. (funny, I am an excellent researcher though I did not research this at all). I do not know exactly when the feeling went away, but I just remember sitting the sofa several weeks after the DIEP and noticing that something was missing. The feeling was gone. I really think it will happen for you. Just don't overthink it. Don't over focus and inventory each part as your body heals. Give it time and give your mind space. It has been proven that once an issue that causes a chronic pain condition is repaired, that it can takes months for the mind to unlearn the pain response. I have watched this from a front row seat with both my DH and a friend. The source of pain is actually gone, but the mind remembers and over protects.
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Hey Marty... I did a Dragon Boat race last summer. Are you doing the race with Dr Massey? I heard she does the races.
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Mammalou, my parents had a place in Blue Lake Springs on Moran Drive for twenty years or so. We spent many family vacations there with our kids, their favorite family memories. My dad finally realized a few years ago (he's almost 88) that he couldn't shovel their steep, 30 foot driveway anymore in the winter or climb the many stairs outside and inside so they moved to Murphy's. My brother is in Murphy's now. I misspoke before--my folks have since moved to Angels Camp.
I just had a great conversation with my mom. My San Diego brother has visited senior residences in San Diego and has apparently and wisely given them my parents' names and address. They have been receiving brochures, haven't figured out why, but are getting --dare I say--excited about these places. My dad even said they could move there in July! It might take that long to get things sorted out, we'll see. I am praying he doesn't change his mind. My mom opened the conversation saying that she was getting things ready to give away, wondering why they have kept certain things for so long! This is a miracle because she was angry at me for months when I gave away literally garbage bag after garbage bag of stuff when they left Arnold. I am so relieved the convo went so well this time. This could easily change, it has before, but I am so thankful right now.
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Dragon Boat racing sounds so fun. Probably not with my stupid LE arms, though. There are plenty of other fun things I can do, don't feel sorry for me!
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it's a small world Jeannie. Our house is at Big Trees right by the redwood trees park. We did lots of summers at Blue Lake Springs, too! I hope things keep going well. I love San Diego and I'm going there for a small vacation in2 weeks.
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Betsy, I am on a team of mixed survivors. Dr M sponsors a team for the Festival from the floor her patients go to following surgery in Charleston. The nurses love her for doing it because she is one of very few doctors who do. It is a nice way to thank them. She even gives them a food budget and participates. I haven't told her yet that I followed through on this, but will offer to help if needed. She was going to paddle with me, but is spending too much time in NOLA this year.
Bosom a great idea about writing down and looking back. That will give you lots of joy in small daily victories. The really add up to a lot.
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Good for you, Deb. Sounds like a good plan.
Mamma, I forgot to say that I thought my nipples looked pretty scary at first. They started out big and have shrunk by half, look much better. I hope they don't completely flatten out but if they do, oh, well. I just don't want to think about or stress about my boobs anymore. Is that possible???
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you know Jeannie, I agree with you, I'm getting tired of thinking about my boobs too. Enough is enough!
Next week I find out if this latest biopsy is benign. I'm just going along assuming it will be benign, so if it isn't, i will be floored. I don't think I could even entertain the thought of having a mastectomy and reconstruction on the other side .
Good luck next week Bossom. I can tell you that I am spending less time worrying. Last year for a biopsy, I was a wreck. This year, just rolling with the punches. So, maybe it does get better. I'll lye you know what I think of the book when I finish it.
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mammalou, I surely hope your biopsy is benign, too! We are in your pockets, either way, as always.
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bosum... It helps to do positive things like your journal idea (great advice from the nurse...wonderful idea on your part), sometimes it takes a force of will on your part, and sometimes "life" just moves in and starts re-focussing your thoughts. I don't think the awareness of OMG, I have/had cancer.... ever leaves 100%, because it can come back with the speed of lightning at times, but, you get better at re-directing yourself, too. You really will have days, weeks, months....where you don't think about it....it takes time!!! You are still recovering and reconstructing....be kinder to yourself! (hugs).
jeannie...that's wonderful news about Mom and Dad!! So happy for you that the phone call went well. Good work on your brother's part too!
I think it's part of being "human" to attach memories and emotions to "things", I know my folks did and I certainly do too. How much that means we feel the need to hang on to many things, differs for everyone. I guess I'm the odd one out...even in my own family. When my parents had both passed away, my brother and sister and I had to go through all their belongings, as well as those of my Grandmother, as my brother had stored everything. Not an easy task, emotionally. Everything we went through had memories for us. I wanted just a few "things" of each of them, but I needed them to be things that I would use, or have out so I would see them everyday. That is enough to keep all my memories of them alive to me. Stuff that was still usable, and none of us had need for or wanted, I hoped to pass on to places that meant they would continue to have "use and life" for someone else. My brother and sister....NOPE!!!!!...completely different mindset. Barely would part ways with anything, and probably 90% of Mom and Dad's and Grandma's stuff went back into boxes and shoved in closets and dusty, moldy basements...made ME feel like I was disrespecting them and burying them all over again, made THEM feel like they were "keeping things in the family"....Made for some pretty intense family dynamics....let me tell you. Once again, differences are the common denominator.
mammalou...that book is used here in bc recovery support groups. I know a few local ladies who highly recommend it. In your pockets for the path report...keep rolling with those punches.
hmm...I seem to have written a book...time to pour another cup of coffee and "refocus" again! Have good days, everyone!
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Nihahi, I always look forward to reading your "books". You have wonderful advice and you are so willing to share yourself with others.
Mammalou, good luck with your biopsy results this week. I'm praying for you.
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Hi, all! This is Sharon1942. Changed my user name. Well I'm still moving on but just got a new ailment - BC treatment related? I've just been diagnosed with de Quervain's tenosynovitis in both hands last week by my rheumatologist - a painful condition affecting the tendons on the thumb side of your wrist. The doctor's PA gave me a prednisone regimen & had me get thumb braces. She said if this doesn't work they'll try corticosteroid injections. I'm icing it,too. I searched this on BC.org & found lots of Arimidex users have this! No! I thought it was from lots of crocheting - ha! By This is not funny. I have been miserable! Some have even had to have surgery. What next! Hope you all are doing well!
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Low energy these days, but hugs to Jeannie. Good luck with your parents moving. Went through this with my parents a few years ago, and it was tough.
Positive thoughts to all that need them.
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