The dumbest things people have said to you/about you
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Barbe, you do look great, like a TV star. ;-)
I had a friend I'd known since high school way back in 1980. When I was first diagnosed in 2004, she said she couldn't really be a support person for me since she'd just bought a new house and didn't have the time. I haven't seen her or talked with her since. To balance that out, I had three friends who really stepped up, even though they had medical and family troubles of their own. You just never know how people will react.
E
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Didn't have the "time" to be a friend....how sad is that!!
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sheila - way to go girl!!!!!!!!!!
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Barbe, my mother had mastectomies - in 1972 and again in 1990 - with no reconstruction, and she DID have pain. Each case is individual.
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kittycat- Just curious- is there any difference, between augmentation and mastectomy, in how the breast feels afterwards? After you are completely healed? I've just always been so curious about this.
mom3band1g- I'm sorry about your mom. A lot of times when we have experience with a bad parent growing up it makes us try that much harder to be a good parent to our children. Something tells me your 3 boys and 1 girl are lucky to have you as their mom.
enjoyful- Wow. My friends didn't make time for me but didn't say it right to my face. It never ceases to amaze me these days how rude people can be yet seem to be completely clueless that they are being rude. With a "friend" like yours (and mine) you just hope that karma really does exist.
Barbe- No pain after MX? Your pain threshold must be as high as Mt. Everest! I had my TE's placed in a separate surgery a week after my BMX (my PS preferred to do it that way) and I definitely had pain that week. Someone once said that your body doesn't know the difference between surgery and being stabbed with a knife. I definitely felt like I was stabbed!
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mom3band1g - you are not alone - my Mum kinda sucks too - it is all about her and she minimises everyone elses situations. Last week was another classic example - she had to have a basal cell cancer taken out by the side of her nose - a half hour op at the drs rooms and stitches to be taken out after 4 days. She rang several times before the op to remind me that she was having it and when I rang her afterward it was SO painful and she had SUCH a big plaster over the area that she couldn't POSSIBLY go out, and she was worried about how BIG the scar would be and I do hope the test comes back with clean margins so I don't have to go through all this stress again and so on..... I just felt like saying 'come on - get a grip' but she is 92 and I am not hurtful like that. I listened, I was empathetic, I was sympathetic and I felt sad that she could not do that for me when I have faced terrible times in my life.
kate33 - you are spot on when you say a bad experience with a parent growing up can make you different with your own children. My Mum chose to go back to work when my younger brother went to school and at 8 y/o, being the only girl (two older brothers as well), I ended up with a lot of responsibility for household work and my little brother. I hated every minute of it and decided at a young age that I would be 'there' for my kids if I had them and that is the way it has been.
barbe - I had immediate recon following bmx so I had pain aplenty but I made the comment about mx being painful because my friend had a single mx and was in considerable pain for several weeks afterward.
kate - stabbed, lol - know what you mean! I had several internal stitches either side that pulled for about 3 weeks after my op and I felt like I was being stabbed everytime they caught - nasty
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I also had considerable pain after a single mx, no recon. I used an OTC drug that's available here but is not approved by the FDA so not available in the U.S. It's the same one I use for migraines so it's pretty powerful. Until then I thought I had a high tolerance for pain - had 5 of my kids without anything, never take novocaine for fillings etc but this? Yep, stabbed about sums it up. So, like any se, it's pretty individual.
Leah
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Okay, let's define pain then. My hysterectomy almost put my lights out I was in so much pain. I have Fibromyalgia which exagerrates pain so when I was going in for my masts, I was pretty terrified that it would put me out of commission for a couple months. I even asked if I was getting a morphine pump! Anyway, my doctor booked me for 2 days in hospital so my pain would be under control when I left. There was pain that was totally manageable. I was pleasantly surprised. Not any where near the level I was expecting. With FM I get pain meds pre-surgery and continually after until they can confirm my pain is under control. No matter what kind of surgery, so they were vigilant with me.
Now, with my spinal cord being squeezed by "something" I am on tremendous amounts of pain meds. I take Hydromorph twice a day with Oxycontin for break-through pain. It would be illegal for me to drive in the states if I was caught. But I don't get stoned, the drugs deal with the pain and that's all. I take just more than the narcotic equivalent of 25-30 Percocets a day, not including the Oxycontins.
So yes, I do know pain, so I guess it was just my level of pain that I was pleased with. I cannot imagine the pain of expanders, it has to be breath-taking, you are SO brave!!!! I think it's horrid that the doctor made you go through 2 surgeries to get them Kate!
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Yeah, Barbe, I was kind of wondering about this "hardly any pain" thing. But - "hardly any pain in comparison to the overwhelming agony I was expecting" makes more sense.
I think the best part about the surgery is - it's over.
Leah
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Well, I'm kinda like Barbe. My BXM were nothing in comparison to the TE's being placed later. I did not take anything more than extra strength tylenol. Mind you, when I woke up from the TE's being placed, everyone could hear me screaming for pain meds. That was really tough. The exchange and an ooph at the same time were pretty easy too. I did give birth naturally 3 times. I guess I have a higher pain threshold than some, but pain is what I most feared.
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barbe - no contest - no wonder you thought is was not so painful. My recon still feels like a large elastic band across my chest and in fact now that the nerves are growing back it is more uncomfortable than it was a year ago - not painful but I am aware of them most of the time. I have learnt I have to abdominal breathe when I am exercising now to get enough oxygen flowing as I can't expand my chest enough. I have been and am still doing exercises that stretch the chest muscles so I don't think it is going to get alter much from now on. Oh well, in 15 years or so when they have to be removed or replaced I think I will be over it!
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Wow you all are busy.... Those are some horrible MIL stories. My MIL was very nice and we got along fine - she wasn't really a warm person but she was very smart and cared very deeply. I miss her along with my mom. Now my step MIL was something else. She basically was probably sweet, well maybe... but she was very simple and not terribly bright so I tried to keep that in mind when she would comment on the beautiful wall as we were driving down the highway and it was a cement retaining wall..? But I finally couldn't deal with her when we were in the process of adopting our daughter. She waited till my husband and his Dad and my boys were outside and said to me - Are you really going through with this adoption? You know she will never love you and you will always know she isn't yours and you'll end up hating her. I was so stunned I just walked out of the room.
I think a lot of mean hateful comments all come from jealousy. That seems to be one thing that fits in a lot of sitruations perhaps not all but a lot. Going back with my sisters - the one thing that I try and remember is my mom once told me she thought they were both selfish and didn't understand how they were ever going to be happy. Of course my Mom and I were very similar and I was surprised after she died how much she smoothed things over so I that had no idea really who my sisters were.
Kate, my trainer(who I haven't seen since my diagnosis) had augmentation and in talking with her there were similarities but so very different. I think not only physically but for augmentation/or reduction for that matter it is something you want to do and are usually pretty thrilled with the results. There isn't grieving involved or fear not to mention pain of reconstruction. But I was wondering about that as well and now that I'm further along and she is pretty open to talking about it I'll probably ask her more.
Kitty, wow you really have been through a tremendous amount. I'm so sorry and yet you have the most wonderful caring attitude and personality!
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barbe- Your explanation makes a lot of sense. I had a lot of pain with my BMX but it wasn't as bad as I had thought it was going to be. The TE's on the other hand were excruciating at first. I woke up in recovery with chest pain so bad they thought I was having a heart attack. (They really ought to warn you what to expect! OK, ma'm, when you wake up it's going to feel like an elephant is stepping on your chest and he has really sharp toenails. So don't be alarmed or anything.) And actually my PS did give me the option of having the TE's placed the same time as the MX but she said since I was doing a nipple sparing MX I had less chance of infection and she got better results by letting everything kind of settle down for about a week first to ensure the blood flow to the nipples was all good so I agreed.
Kate33 "Yes, they're fake (@)(@) the real ones tried to kill me!"
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An Emergency Room doctor said to me yesterday, "if you had a more positive attitude, maybe you wouldn't die so soon from the cancer." Needless to say, I wrote him up and meeting with his supervisor today to "ejecate" a bit about protocol for ER docs (who are not oncs) and better ways to communicate with cancer patients. These narcissistic 20 somethings have no business commenting on my recovery path nor do they know where I have been with cancer treatment, nor that I damned near died from Tamoxifen bec I am allergic to chemo. nor that I will never be the same because of the damage done by the chemo (heart, lungs, thyroid). And he said it in front of a group of people who were patients in the ER-hmmm-how many federal privacy violations there!! I am so angry and do not have the emotional strength to be so angry. Blessings to all, SV
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SV....Holy cow! What an idiot! Can I go with you and slap that ER doc around a little bit? I'll bring my 6'1" daughter - she loves to intimidate and slap idiot doctors around, too. We love the Outer Banks anyway so would be happy to take a road trip from Maryland. :-)
I'm in the "recon hurts like hell" boat, too. I told the docs beforehand that my body doesn't like morphine and when I woke up...guess what...morphine pump. They had to keep me an extra night because of the projectile vomiting and pain. Screaming "put me on demerol, you idiots!" finally sank in about 12 hours after surgery. I got better immediately. But you know, docs know everything and we're just moronic single-celled organisms. *dramatic eye roll/sigh combination*
E
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The pain assiciated with almost any surgery is influenced by expectations and prior experiences IMHO. I had so much pain before the mast that waking up after the mast was a huge relief. Yes, I got morphine during the night afterward, but then I think I only took a few tylenol. The place where the darin came out hurt more than anything else. I had WAY more pain after recon than I expected. I used the diluadid as freely as possible for a couple of weeks after that. How we experience recovery and post-operative pain is as individual as the treatment choices we make. Still, waking up from surgery in excruciating pain is just plain poor anesthesia management. The body is under enough stress just from the snesthesia drugs and the surgery, it doesn't need the stress brought on by pain and the emotional distress pain causes, I don't care how high your pain tolerance is! (or how low, for that matter.)
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I woke up from a lumpectomy years ago in a LOT of pain! The nurses in recovery weren't much help and my blood pressure was too high to let me go. Finally a nurse admitted that the doctor hadn't prescribed any pain meds! I told them to let me go as I had Tylenol 3's at home at least. They hemmed and hawed and finally let me go with sweat running down my face from pain. I found out later that the doctor (who was standing in for my sick surgeon) hadn't bothered FREEZING my breast!!!! So I woke up with NO freezing and NO pain meds!!! No wonder I had worse expectations....sigh. 0
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babre--that is absolutely horrible! Please tell me you reported that doc, filed a complaint with the hospital or something! Therecovery room nurses are responsible for GETTING pain medication orders from the anesthesiologist if needed, why didn't they do their job? Where was the anethesiologist who was supposed to be monitoring your condition? That kind of thing absolutely infuriates me. SCREAM!!!!!
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Believe it or not, I did nothing! Except tell my surgeon. The substitute doc begged me not to tell anyone in his waiting room as I stormed out. I'm really someone who doesn't like to rock the boat....
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Barbe: Your hysterectomy stiry strikes a chord. I had a c-section 21 years ago, and when I had my hys last year, I thought the pain would be similar. NOT. When the nurses were sitting me up, I kept saying, "I didn't expect this." The out-of-the-blue aspect of pain, feeling out of control, I think worsens the pain, since our anxiety levels go sky-high. The old adage "stay ahead of the pain" is a good one. Way sorry to hear of your experience with the lumpectomy.
What I love (not) is telling everyone you're allergic or reactive to a certain pain med and having them write the script for that very med before you leave the hospital
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Hi Ladies. I know that in the big scheme of things that what's bugging me is not that bad but I just have to vent. I've been in the reconstruction process w/ my expanders for over six months now, mainly due to a couple of ridiculous complications that weren't my PS's fault, just unfortunate things that happened. But, as a result, I think my patience is wearing thin, at least today it is.
Anyway, a gal who is an acquaintance of mine at the gym asked me how I was doing (I appreciated being asked) and if I still had my expanders. She knew from past discussions that my expanders meant inflations and I told her that yes, I still had my expanders and I'm still going thru reconstruction. She then looked at me and laughed! I understand that maybe she was uncomfortable or something, but it made me feel like a joke. I was so taken back, I didn't know what to say. I'm getting really tired of gals asking me how the future DD's are doing, etc. like this is all just a big joke. Generally, I've tried having a sense of humor about it but it's starting to bug me. One woman even told me how lucky I am to get reconstruction, like she thought I'm getting a boob-job! Well, thanks for listening to my vent and thanks goodness for this board.
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retrievermom - yep, that is just what my surgeon, anaesthetist and nurses said 'we need to stay ahead of the pain' because it is harder to get it under control later.
barbe - you learn something every day don't you - I didn't know they froze the breast for a lumpectomy! What do they do that for?
I agree native that barbes experience was a system failure and should have been mentioned to the organization to try and prevent the same thing happening to others. When I left the hospital post op, they gave me a questionnaire which asked for info about my hospital room, pain control, doctors visits, nursing care, etc - and it was good to know they are proactive in ensuring the 'system' works for patients and that my comments good or bad would be used to benefit others. We must be our own advocate in medical treatments now days because, even if the 'system' is working, they handle such big numbers that people can still fall through the cracks if they don't speak up.
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Hmm let me share 2 things that really stuck with me in 3 years:
1 - When I was diagnosed and terrified of the golf sized ball in my body.. one of my 'acquaintances' asked 'whether she could touch it' ... I was too shocked to even respond just walked away.
2 - People who would want to see me like visiting an animal at the zoo.. i would not answer my phone .. would not return their calls.. they would still show up.. !@#%$!! and they were not close friends before and I have not seenthem since then.
3 - Couple of months after chemo, being extremely proud of my fuzz which was now very visible I went to the office without covering my head. One of the executives came by and said ' I am so proud of you you are bravely not wearing anything on your head and walking in the office bald'
WTF !!!
But then again i am going back to my pre-bc self.. I am not sure how I would have handled a friend with bc.. it takes one to know one I guess.
We also become very fragile.. and some things that would not hurt us normally hit us right in our hearts..
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SV please let me know how you made out with your problem today.I hope the jerk gets fired.
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diane - how horrible for you - I am so sorry that happened to you
. I don't think you are being overly sensitive, anyone would be hurt by someone laughing at them to their face! Just tell people that there is no time limit on recon - that it takes as long as it takes and that you will let them know when it is all finished up! 0 -
Raeinnz, by freeze, I meant anaesthetic. You know, like when a dentist freezes your mouth before drilling a filling for example. It gives your body a pain-free experience...
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Throughout my breast cancer ordeal, and it's been almost a year, my mother has been just horrid. I have never told anyone in order to protect her. I have spent most of my time meeting and fulfilling her needs. It has gotten so old. Recently my husband commented that some relatives, who we havent't seen in a while had all gained a lot of weight and that I was the only one who had lost weight and looked better. I go to the gym 5 days a week and exercise for at least 1.5 hours each time. My mom said, "well she had to, because of the cancer." I told her "that was a mean thing to say." She denied that it was 'mean'. Told me she would never come to my house again (she lives .1 miles away in a house we bought for her) and not to call her 'mother' any more. All because I spoke up for myself and wasn't going to let her take my hard work away. There's tons of other crap that's happened that's just unbelievable and I can't even bear to think about it. Normally I would run to her and try to rectify the situation but instead I left with my family on vacation and it has yet to be resolved. Oh well...
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brendaskids - I am so glad you have this safe place to speak your mind. This may sound harsh but I have learnt from experience that you don't have to like your mother and you don't have to let her hurt you - remember SHE can only hurt you if YOU let her. You have been through so much and you are doing so well for yourself - you don't need negative, manipulative people around you. You have done nothing wrong - let her make the first move to rectify the situation. Spend your time on your lovely DH - he sounds so supportive.
Rae
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SV. That was another case of bitch slapping being needed. These young people with white-itis, as we used to call it need to be slapped down on a regular basis. Darla
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darla - you are right, 'respect' is a word too many of the young nowdays don't understand! I grew up when teachers were allowed to strap or cane us and we were smacked by our parents if we didn't show respect - we learnt real quick to mind our manners and mouth.
barbe - oh I see now - hadn't heard that term before. Did you have your lumpectomy done under IV sedation rather than a general anaesthetic? or do they use local anaesthetic as a pain relief following surgery? I didn't have local anaesthetic with my bmx under general and had no bruising but I did have local when I had the ports and skin flaps removed under IV sedation and man was I bruised - literally black and blue literally all along both 10cm wounds.
Rae
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