Illinois ladies facing bc
Comments
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About the post mx camisole...my insurance company paid for one and I was given one on my pre-OP appointment. Did you check to see if you will get one?
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BoatinGirl "cancer is a time suck" that probably would be me.
As far as the walk. You don't have to walk. There will be plenty of things to do at the event. You can still raise money but not walk. I am the team lead but I won't be walking this year because I am also the chair of the survivor tent and I will be working for ACS that day. I will be there but at the survivor tent making sure all is going right. You can even wait till the day of the event to sign up but it will cost you an extra $5. I would think 2 days before you'd know. Again you can sign up, raise money but if you feel under the weather don't come. Just let me know and I will get you your t-shirt.
But after the event I do plan on lunch plans for all that are interested. I'll keep you posted on that.
As I mentioned if you want more info or the link to our page so you can sign up let me know. If you sign up be sure to join the Illinois Ladies team. That's us!
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2nsJenn---I agree with Lago--they did give me something from the hospital but I didn't wear anything special-I just pinned my drins on the inside of a button down nightgown, robe--I did buy a couple of cheapie ones but they came in handy cuz I ended up with drins for 3 months so I ws glad to have buttons on everything. Now I read u can take showers usually so like Lago said make sure everything is lower and even if u have glasses and cups higher now lower them for ease. I slept in a reclinr it was more comfortable for me, I did in the hospital cuz I was there for a week and I was not going to try that bed for any length of time, If u can't take a shower while u have drains I purchased Rinse off shampoo and body cleansing it help alot . all u have to do is put it on and it gets all sudsy and towel it off so no rinsing. I had no pain either which surprised m and neither did my sister so that was not a problem for pain meds--It actually was one of the least pain opertions I've ever had. All I had was one strip of tape with a cover over it and I was seeing the surgeon 2x a week for 3 months and he changed it or cleaned it whst ever they do, I didb;t pay attention cuz I was talking and don; trmember how long it was on, but all it was was a long strip line like a ruler made it--I assumed it would be more noticeable hahaha but of course no boobs are noticeable I remember the Dr. telling my girls to have someone stay with me for at least a week--OOOHH that lasted one night--I could do things myself and mearsure my drains myself and clean them out--They were hovering over me like a helicopter and one of them was gagging when she saw the drains and the other couldn't look t them--my granson who was like 4 helped me more than they did. And he was more fun for me.I'm talking about me cuz tht was my experience even tho we're all different the operation itself is pretty much the same for us. It really is an easy one after, I think the before thinking about it makes it worse and then u say this is it? So just relax and if u have help wonderful--and u'll be seeing u'r surgeon so u can always ask them and release u as soon as he can. Oh and if u use a big purse don't---LOL u'r Dr. will have a fit. I'm sorry to go on and on I'k jammering today but I like to think u won't worry about it--it's not worryable (My word)
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2ns_jenn (& all)~ just to clarify.., the On-Q pain pump is NOT a narcotic. It's an anesthetic that allows the surgical site (chest) to remain numb for up to 72 hours. I believe it helped A LOT with pain management after my BMX as I did not have to FEEL much for the first few days.
I was acutely aware of what a difference it made after I had my exchange surgery (5 months later) and did NOT have the On-Q ball. I can only attest to my own experience but I was much more comfortable after my BMX than after my exchange. Again, it is NOT a narcotic pain pump. I would encourage all women who will have mastectomy to talk with their surgeon about it. Please feel free to post or PM me with any questions.
Again, Good luck! and keep us posted.
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BoatinGirl~ Thank you for your kindness. The "celebration of liberation from breast cancer" (her title) was Friday night. Sad and uplifting all at the same time.
Good luck with your friend..., hoping scans come back clean!
Hang in there! and try and enjoy the holiday weekend in the meantime. 0 -
Thanks for all the responses. Surgery is June 4th and I just saw the PS on Thurs but never thought to ask about the drains - I just always assumed it would be 2. Also thought they would only stay for about a week. Can't imagine a month, let alone 3!! I am assuming they will give me something to come home in, I just thought I might want extra so I didn't have to wear the same thing for days on end. I can't imagine how I am going to shower/bathe considering my foot will be in a cast - never thought about that part when I decided to go forward with the bunionectomy!
I also never thought about my purse - everyone laughs at me and calls it my luggage, guess that will have to change for a while.C - I have never heard of the On-Q pain pump. I'll have to ask about that. My boss's wife recently dealt with all of this & he told me to ask about using botox for the fills as it helps ease the pain but my PS doesn't recommend it. He said in the long run it will cause muscle loss.
BoatinGirl - I thought I remembered you saying you were near me but didn't realize it was just around the corner. Maybe we can get together to chat sometime after my surgery. Where are you in the process?
Lago - Are you still planning to volunteer at the AWBC? Let me know so I can look for you if you do.
camillegal - I love your made up word! And I also enjoy the jammering, you have a lot of insight to share!
Enjoy the rest of the weekend!
Jenn0 -
Jenn I can't do it. Too much going on with work, some other volunteer stuff (not just ACS) and a few freelance projects I'm finishing up.
BTW I was 2 drains for 1 weeks. That's very typical but doesn't always work that way.
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Yay Zap!
Welcome Dwilli and Jenn. Stop in often.
Welcome home Joan!
Jenn-I got two camisoles w/ velcro pockets from my hospital-they were covered by insurance. I also found hoodies at Target that had inside pockets. Right after surgery I wore shirts with buttons.
Hope everyone is able to enjoy the holiday weekend-in spite of the weather...
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camillegal, yep I am in in Southern IL. a few miles outside of St. Louis, MO.
C-squared, I was wondering about the non narcotic pain pump. I am in the middle of the fills and my PS siad I am one of those unfortunate ones who is not numbed at the injection sites. The last time it felt like he hit a nerve and I almost jumped out of the chair. I was in so much pain for that moment, I was nauseated for most of the day and I also had to deal with the new 100 cc's pressure. My next injection is June 3rd and I am trying to figure out what to do to prepare for the next injection. I am really afraid of this next visit and I am only half way through this process with surgery projected at the end of the summer or early fall for the PI.
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Jenn I forgot about u'r foot--OMG how can u take a shower. U drain probably 2 on each side will no doubt come out within 2 weeks (usual( but if u foot is still in that hing.----oh but the stuff I told u abou beieve me u'll feel better and clean--no rinsing so no water needed00and use loads of lotion cuz u'r skin wikk start drying up easily so always have lotion by u. I created my own Island of everything that I used for the day next to me and I used it,
C--I never heard of that, but then again it's been a while for me.--Oh wait I never had recon. and I truly don't know how u gals do it.
Dwilli I hope that pain was a one time thing, cuz that sound awful --Ask u'r dr. for a bullet to bite on and if it hurts u wil bite on it so hard it will shoot right out of u'r mouth and who knows whoit will hit. remind him how it hurt. Hopefully it will go easier.
The beginning of June has a lot going on this coming monthe, BTW I don't like to see Drs. I have my back specialist to go to with to many unanswered question for the other Drs. so we will see what she has to say. She's probably 29 and georgeous so did she really do her own homework--that's how I think==I know I'm a little nutty cuz I even ask them that.
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Dwilli I didn't have discomfort from expansions till the last 3. I had 10 altogether. My PS filled slowly, 50cc or less at a time. Maybe you need to ask him/her to go slowly. It might help. It does sound like nerve pain… and that isn't fun.
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Not saying anything about anyone's age here in particular, but just reminding everyone about how it goes. There are a lot of beautiful women here and there are going to be lots more:
You can take no credit for beauty at sixteen. But if you are beautiful at sixty,
it will be your soul's own doing.
- Marie Carmichael Stopes0 -
2ns Jenn - I will be having a BMX with tissue expanders late June. A MRI and PET scan picked up a suspicious lymph node, so I am being told chemo is almost a certainty.
So early on in this rather lousy journey. But so grateful for this site!!
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Dwilli~ Sorry to say I have not heard of the pump being used for fills. I think a conversation with your PS is needed. How much is he/she filling at a time? Like lago said, maybe just a small amount at a time will allow you more comfort.
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Just by reading what others have gone thru it always seems easier with less fill at a time----but I don't know from experience.
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An old stand-by but it always looks so good to me:
Remember laughing? Laughter enhances the blood flow to the body's extremities
and improves cardiovascular function. Laughter releases endorphins and other
natural mood elevating and pain-killing chemicals, improves the transfer of
oxygen and nutrients to internal organs. Laughter boosts the immune system and
helps the body fight off disease, cancer cells as well as viral, bacterial and
other infections. Being happy is the best cure of all diseases!
Patch Adams0 -
Cannot remember who here has done any treatments for osteoporosis. Thank you FEMARA! My ONC is suggesting Zometa infusions now. I am scheduled to do my first one in a couple weeks. He also is suggesting switching to Tamoxifin instead of Femara. But so far, I am not buying into that. My ONC said that his wife's best friend developed osteo while on Femara and kept getting little fractures in her feet. After switching Tamoxifin, she no longer had that problem.
Chilly holiday weekend. Finally it is going to warm up but looks like a rainy week. I sure hope it doesn't slow down my walking routine much. My DH and I are participating in a local cycling event this weekend so I am praying for drier weather by then.
Thinking of all going through treatments, tests, scans, and everything else that goes with this journey. Keep on keepin on! One of the silver linings is all the ladies like you here who offer your support and friendship. You are all amazing!
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Joan I have to look that up--there are so many different names for our bodies falling apart that I never know. I do know that owrd but lately with all I've heard I can't keep track--I hope they find a good remedy to help u and it doesn't do other things to u;r body.
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OK they gave Evista>>> for a treatment (drug) Beats me.
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There are several medications to treat osteo. Notice all the celebrities doing their advertising.... Sally Field, Blythe Daner...? Let me see, whom should I trust? LOL
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Oh yea Now I remember it ll and what it is and I looked it up LOL--just to many names for me to remember I guess. Hmmm who should u trust? The mother of Gwyneth Paltrow or the flying Nun--quite a quandry.
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LOL, Cami! Hmmmm.....
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Geez Joan I think you're due for a break (and I don't mean bones)
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Camille-that's funny!
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Joan - I just started meds for osteo....grrr! I am on Atelvia. Because I have bad osteopenia my MO does not want to switch me to an AI yet. He wants me to stay on tamoxifen for now. I met with the endocrinologist about all of this and he hopes I can get bone density up in the next year so I can go off Atelvia. I hate all of these meds! I hope I can go off it in a year. I should not be this osteopenic at age 47!!! Thank you chemo and early menopause!!!
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I think Sally Fields used to do the Boniva ad. I'm sorry to hear it Joan --- I do know you are so very active despite all the back issues you have had to get through. I'm sure hoping this will work out for you. Now there is something called Prolia......I am always "nervy" about taking some of the newer drugs. Only so many people use them in the "testing" trial stage. Once on the market and scores of people are taking them......I think they often do a recall on a lot of things.
Your regimen ( Zometa ) is an older drug and I would feel more comfort with that one than any of the others.
Wishing you well, friend.
Peace and love
Jackie
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I did some research on Prolia and decided to stick with the older Zometa. My ONC was a bit reluctant about Prolia also. The AI 's are so darn hard on your bones! I managed to get my Vit D level up to 78 and that didn't seem to help either.
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Joan, I've had one infusion of Zometa. Very bad history of osteoporosis in my family. I'm not there yet. My MO and I fought over this. I was to get it each 6 mo, but we skipped the last one because we weren't certain I could stay on AI because of my eye SE. Now I think I'll have a DEXA before the next one. Hopefully the DEXA will show all my exercise, weight lifting, and Vit D and calcium has kept the bone loss at bay and zometa is not necessary. If not, I'll do the 2x/yr.
Only SE was one day of intense pain in an ankle and foot that I've badly sprained twice. Now have paint and odd swollen joints in the same foot on exemestane. Wasn't a problem on anastrozole.
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Oh I love prunes but with my ongoing time with the big D I'd have to walk aroud with a toilet glued to my butt.
Now I see a new Dr. next week for my back and discs, I've already had 3 opinions they do agree on one thing but not on all the things so I'm hoping this is the last one--they keep sending me to Drs.I hope I can get real help for the pain but I don't know anything about this one so it's another crapshoot Oh well
Our westher is showing alerts all over the place for severe thunderstorms, hope not I'll watch what my cat does cuz she always know before hand. Just like she knows about my back she's rubbing it like crazy and never did---I wish she could talk, then I wouldn't need all these Dr.s Remember it was her that made me realize I needed a mamo, cuz she was rubbing that spot like crazy too. LOL I rescued her, maybe she lived with a med student and he had to move.
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