Lumpectomy Lounge....let's talk!
Comments
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On the rads board some of the women swore by cabbage leafs placed on the breast....cheap and easy, so might be worth a try!
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Beebazboob, so sorry about your poor skin. When I thought I was going straight to rads, another "online sister" PM'd me with the suggestion to get cold sheets from my pharmacy or RO. She said there is one called 2nd skin that really helps cool, moisturize and protect skin if it gets really bad. You could ask how your RO feels about those; they sound great. It sounds like rads is also cumulative so the skin is often pretty bad until a couple of weeks post treatment. Do you need to wear a bra? I laughed on Saturday when the fire/paramedics were with me. I needed to change my clothes and asked my DIL to hand me another pair of yoga pants. She asked if I wanted underwear, and when I said no I'm going to skip those, the cute female fire medic said "Yeah, underwear really is over-rated! I had to both laugh and agree with her!
Peggy, glad you have such a healthy attitude about relationships. I think as we get older, it's harder to think of giving up our independence but it's so nice to spend time with people we enjoy. Isn't it amazing with the online sites now? It used to be you had to join a church group or go to bars to meet people. This way you can find out so much a head of time regarding interests etc.
And Sloan, on Saturday I sure was beginning to regret the no port thing, but then again, I could imagine all sorts of germs getting into me in the ER with a port, so who knows. After 6 pokes though, my poor arm/hand sure looked sad! It's so hard having to put everything into just the one side.
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Dara, you are so right. It is wonderful that I can meet people online, having winnowed out those whose profile just doesn't jibe with mine. I've never minded being alone though I had never lived on my own - straight from college dorms to marriage. The year DH was in the nursing home made the transition easier for me than those whose loss was sudden. Now with a new home that has no marital memories I truly do feel independent. I'm not knocking my 49-1/2 years of marriage (and still miss him) but this is my life now. Can't bring DH back, so looking forward and liking it very much. Any of this make sense??
HUGS!
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Makes perfect sense to me, Peggy...you are a wise woman!
Hugs!
Octogirl
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Beeb- SO sorry you are having the rash and blisters from rads. Your RO may give you a bit of a break if it gets too bad. I had a really bad area and LOTS of constant irritation and itching that drove me crazy sometimes. Cabbage leaves were recommended by several folks and I tried them...they actually really helped. Reg cabbage...wash/dry leaves and refrigerate them...use as needed....they seemed to take a lot of the heat out and relieve the irritation. I even used them when a few of the blisters opened up...of course, you prob want to check with your RO. Hugs to you!
Dara- so glad today is better!
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Beeb, sorry that you are having skin issues from rads. I really hope it improves for you soon. Dara i hope you are feeling better. You have such a wonderful attitude. It's quite inspirational. Peggy I also admire your outlook on life. I hope you are all doing well. Hugs.
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we had 25 years, and it was half my lifetime when he passed.. i will always miss him, but eventually you do move ahead and whether it is sudden or prolonged, you are never really prepared for it.. you learn to do other things, leaving it in God's hands. I'm glad you had the years and the memories you built together.
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Judy, very true.
HUGS!
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Peggy you go girl! When I was on the website, it had a public chat room for the members. That was where I headed and we had a great time. We organized get together soon with the people that lived in Ontario and Quebec. It gave us all a way to meet each other with no pressure. That is how I met my DH.
Beeb - sorry you are having the skin problems. I am heading that way as soon as I finish Chemo.
I spent my Labor Day weekend in the hospital. I had chills and then spiked a fever, so to Emerg on Saturday night. My hubby took me to the hospital attached to the cancer clinic. They did not mess around,but got me a bed and started the tests. Blood (2 gallons, it seemed) , urine and chest x-rays. I was DX with neutropina. Which is when the neutrophil count is way too low. I was there until today. Antibiotics for infection and I've liquids. Now the counts are way up , pre chemo levels I was told. So it looks like my 3rd session is still on for Friday
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Wow, Elizabeth...glad your DH took you to the ER and that they were so responsive there! Hoping you get some rest and are feeling better and better each day- and, that the next rounds of chemo are not so severe. Hugs!
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Elizabeth, good heavens! How scary. Glad going to the RIGHT ER did the trick and you are feeling better. Whew.
I don't know if there is a chat room like you describe now with match.com. I think not. But the way it works now is fine for me. So nice you met your DH that way.
I did have an email conversation with current date and we are both on the page - companionship only. Not looking for romance. I'm relieved.
HUGS!!
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Elizabeth are you going to Hamilton for your TX?
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I don't know why I am thinking like this, but "damaged goods" is floating around in my head. I feel like there is a giant C carved into my forehead. I have only been dealing with this for a month, and have never felt embarrassed by a diagnosis.
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Michelle, I am saddened to hear that you are feeling ashamed of your diagnosis. Cancer is such a multi-faceted disease, and, at this point, there really is no way to predict who, when or what type. There is nothing for which to feel shame, you are not less because you have to be on this road. In fact, some of the most amazing, gracious, strong, compassionate people I know have had to deal with this disease.
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Michelle, just think of the C as in Challenge... and we are certainly not 'damaged goods'. I've only been doing this for a month myself... and although we have BC.. before cancer and AC after cancer... it is just a different challenge each of us has individually, but doable in our 'new group of friends' hang in there
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Michelle, I suspect you are still trying to figure out how to come to terms with having BC. It hasn't even been a month since you were diagnosed. That isn't very long to accept that things will never be quite the same. You definitely are NOT damaged goods. You look different (probably) than prior to your surgery, but any surgery is going to leave its mark. Keep reading the posts here and you will find women who have had all sorts of treatments and are living full and satisfying lives, and yes, even having a great sex life. You will get there. It will just take a bit of time. And, as always, post here and we'll do what we can to help you!
HUGS!
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Michelle, Hi, just want to share a story similar to how you are feeling. When my single son was 30, he was diagnosed with non-Hodgkins Lymphoma. He said "who is going to want me now?" It just broke my heart! He is just the best natured, fun loving, caring person you could ever hope to meet and handsome if I do say so as his mother! He was told by his MO that he would probably never have children after treatment. He totally felt like damaged goods. Well he was out with friends who introduced him to their friend who had just moved back to Michigan from Florida. She was beautiful, fun and outspoken. She told my son he should cover up the hickie on his neck. Well it was his surgical scar and he told her it was a scar. She immediately asked him if he had non-Hodgkins because she had just been through that with her Florida roommate. Well that was the start of a very long conversation and caring on her part. They are now married with two children (what do doctor's know?) and she kisses that scar because that is what brought them together. I also felt damaged after my re-excision which left an ugly scar and huge dent in my breast but my hubby has convinced me that he doesn't care and would prefer that I didn't have reconstruction because of what I would have to go through. Just wanted you to know it is ok to have these feelings but time has a way of working them out. Vent away, we are here for you.
Jo
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Michelle, you are not damaged goods. You are a strong, vital woman who happens to have breast cancer.
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Jo, that's a wonderful story!! Thanks for sharing it.
HUGS!
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Thanks girls. My surgery was done by a surgeon trained in oncoplastic methods. My breast looks almost the same (I think I got a little bit of a lift.) The surgery was done through the nipple area. So far, so good. When I get through radiology, and after a waiting period, if my breasts are in different zip codes, I might have some work done to get them to match a bit. A breast lift was offered at the same time as my surgery. At first my surgeon said I did not have enough to lift. She called me back and saw where we could get a large margin and a bit of a lift. Mentally, all of this has not sunk in. I got my official diagnosis on 8/8 and had my surgery on 8/30. In the area where I live, breast cancer diagnosis puts a scarlet letter on you. At least that is how I feel. I have not been out of the house much since the surgery, but I am getting out tomorrow.
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Michelle, aw that can be hard when you don't live in an understanding community. Sad that they aren't living in the 21st Century! Hopefully you have supportive family and friends to help you get over the rough spots. Perhaps you can project a positive vibe (even if you don't feel it). And remember it's no one business but yours if you have BC. You don't have to share if you don't want to. With friends and family I shared. Online I waited awhile and even then didn't impart much in the way of details. Here - well, i poured my heart out.
HUGS!
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Mollie -- Yes, to Juravinski. Do you go there too?
Michelle -- I know how you are feeling... It too will pass. I have one fantastic BFF and my next door neighbour has colon cancer. But I went to my husbands end of year game and BBQ last Tuesday. I know all the people on the team and have partied and talked to them for years. But this time I seemed invisible.. they had trouble looking at me and difficulty directing any conversation in my direction. Needless to say I did not stay very long. I figure it is their problem. There is the end of year party on the 10th and I will be going. We'll see if the atmosphere makes a difference.
Jo -- that is awesome...
This is a great site for tying some really cool scarves http://www.scarves.net/blog/knots-for-hope/0 -
ElizabethM, looking invisible because a) they don't know what to say, b) invisible because they are not going to invest their time with you, or c) because it makes "them" uncomfortable because it could happen to them. I have watched people in our community for years. Their mindset is that "cancer is contagious" even though they smoke a pack a day. I never smoked, drank alcohol, or took drugs. I have a wonderful education, curious mind, step up to do something to help before anyone else. So I have decided to not tell anyone, just family and friends. But I have a family that talks to other people, so I can't control the gossip.
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Michelle,
We had the same problem, both when we found we couldn't have children and when my husband had leukemia, people would rather stay away then risk saying or doing something that 'they think' might offend you. It's like being pushed off the curb.. and I don't know a worse feeling then being alone because no one wants to say or do the wrong thing.. I would have given anything to have them 'offend' me, because then at least they tried
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Life can be so complicated, when factoring in how people react to your loss. You don't see me running up and down the street announcing that my husband has high blood pressure and takes meds. No one throws a pity party for heart issues. I can imagine a conversation, Harry - "Well, I have to have a 10 way bypass open heart, crack the chest surgery. Surgeon is going to remove half of my arteries." Response from Leggs, "wow, Harry, let's get another beer with some sliders. Sound good?" Why does the world stop when someone has abnormal cells in their breast?
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I've been reading all the posts with experiences, and it's sad that so many people react the same with a discussion of cancer. It used to be that the C dx meant a death sentence, but that couldn't be farther from the truth now. I think people still think stereotypically, and either are afraid to offend or don't know what to say so they say nothing. It's easier to just pretend we aren't there and then they don't feel guilty. I started out being very open and forthcoming. But then I found that people were really happiest with the least amount of information. Someone might ask how I'm doing, and they were perfectly OK with my just saying "I'm doing OK." My family and close friends know what's going on, but I don't post anything on social media at all regarding my health. I figure everyone knows so if they really want to know how I am they'll ask. Very few do.
Michelle, as you say, it's their problem, not ours!
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DaraB, the fact that 1 in 8 women will have cancer in their breast, means that everyone is going to know or be related to someone going through this situation. I think so much media hype and organizational hype has put women who have cancer up for sale. I am happy for the pink ribbons, but at the same time I believe people get the wrong idea that every women with cancer has a major hurdle to overcome. When they see women with no hair, which is what is put in alot of media, they, the population, thinks every women will have chemo and every women with the diagnosis will lose their hair. Basically, the entire group of women experiencing breast issues gets stereotyped. When is the last time you told a man who had a prostate removed, "sorry that happened to you and sorry for your loss." Or a man with testicular cancer loses his netherregions, "sorry, man, that must be tough." Never, no one is going to raise a flag and bid a farewell to the man's prostate. Our breasts are on parade and somehow we have become the poster child for all cancers. I am going to hybernate during October, for all the well wishers of women with breast cancer.
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Thanks to all for your post/suggestions. I did ask to see if they would do a FISH test, but the pathologist said it wasn't needed since it was clearly a 3 on the IHC. Since one tumor was positive and one was negative - I wonder if the Herceptin will harm me in any way...since one wasn't positive (based on the surgical pathology).
VLH - do share your 9/12 results when you have them. That is an interesting dilemma you have!
Dara - I did join the September group - and it is very helpful so far (as is learning from you about your chemo SE and solutions!). What happened w/your 9/4 post - was it due to hydration? Was someone with you when you kept passing out? That is my fear!?
Summerburn - I couldn't look either for the first couple of days! lol. But knew I needed a shower on Day 4 so forced myself to take bandage off. It really wasn't as bad as I had envisioned it to be! I was pleasantly surprised. I mean it's a war wound, don't get me wrong - but I was expecting much more disfigurement. And my BS had to get 2 lumps out that were a good distance apart, along w/my sentinel nodes and lymph. When do you start chemo?
Elizabeth - how do you get Neutropina? Or is it a SE of the chemo? I don't even know what a neutrophil count is!?
Michelle - I hear you about the pink ribbons. It is just not for me. A couple of years ago I watched the documentary Pink Ribbons, Inc, and it was fascinating. And this was long before I knew I had breast cancer. I will never buy anything 'pink' again because it is just commercialized and research/meds doesn't not get hardly anything to make a difference. In fact - I despise the color pink because of this documentary and now having breast cancer. I know for some it is helpful, but not me.
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Hi KD,
This explains about Chemo and the blood counts.
http://www.breastcancer.org/tips/immune/cancer/che...OH !!! My port is to be installed on Tuesday, Sept. 13. That is the week in between my treatments, so it will have about a week before it will have to be used in my treatment.
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Home again, home again, jiggety jog...We had such a nice getaway in the mountains. It was warm, almost hot, in the daytime and very cool at night so we could sleep with the windows open and a couple of blankets over us. Going to the mountains always recharges and refreshes us both.
Michelle, I understand your statement about feeling like damaged goods. I didn't have that feeling so much after my lumpectomy and re-excision, nor during chemo, probably because I had lot of complications from the surgeries and was just trying to keep my head above water. But I had my BMX about 6 weeks post final chemo and that brought me to my knees. The finished product was so much worse than expected! I was mutilated and required serious wound care for 16 weeks. You can just imagine how low I felt. The first 3 weeks I did nothing but sit on the couch. I didn't want to watch TV, read a book, play with the dog, or even go get a hamburger. My DH forced me to go outside every day, but I felt completely worthless and lifeless.
Thankfully, my doctor recognized it for what it was: PTSD. Very common in women who have had breast cancer, around 80%~! She put me on a medication that had me back on my feet in about 2 weeks, plus something to help me sleep, since I wasn't getting more than 1-2 hours sleep per night. No wonder I was so depressed!
I guess I'm telling you all this to say, I empathize with you. I have been where you are. For me, medication and time have been the things that brought me around. I still have a lot of trouble with body image--I am already overweight, well, let's just say it: I'm FAT. Having no breasts just emphasizes my big stomach. I look like a man--that's why I wear earrings and makeup every single day. I am extremely uncomfortable letting my husband see me naked. Right now I need to have him take pictures so I can send them to NOLA for evaluation for DIEP recon, but I am so embarrassed for him to see me naked, let alone take pictures, that I have been putting it off for over a month now. I need to just DO IT, but I can't seem to get off the dime...
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