new and future flat sister, with questions
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Hi Hollyboo! I went the Mx road too, not only to dodge the Rads, but it was a big contributor! I had everything crossed and held my breath for the big reveal of the Path Report.
I love how you were able to turn that trip to get your treatment, into a wonderful experience with people. Isn't it amazing how something you think will be so negative turns out to have a wonderful side to it that you couldn't imagine before.
You have a lovely energy, so glad you've found us.
Viv, I wondered where you'd gone. So sorry you've had an awful week, but hope it is back on track now.
You've copped an awful lot too Viv, very similar to our Bobo, but you're much further down the road now and look how far you've come.
I wish you all the very best for the ablation, fingers crossed for you.
Pink hair now, I bet you look gorge!!
Glad to see you back with us, you're never alone with this lot! Take care... M x
Well, I have been sitting here for nearly 2 hours, and I have written another bloody novel!
Cheers to everyone...ldesim, and gramwe where are you? We miss you! M x
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I've been taking 1400 Vit D since my mx. It raised it about 20 pts. Now around 60, which is where other oncs want their patients. I was amazed that it was in the normal range at all since I wear sunscreen all the time. I sunburn like crazy in no time at all, so I wear hats and have a SPF 50 shirt to wear over T's and tanks.
New Year's Eve I sat with my head turned way to the left to stay in a conversation at the party. My neck and shoulder have hurt ever since. I have a PT appt on the 28th, which can't come soon enough. I held out for the practitioner who helped me so much last time. The only other time she had was this Thursday in the middle of my onc appt. I've been alternating ibuprofen and tylenol for the pain. I don't usually take ibuprofen because it does a number on my stomach, but my shoulder hurt more than my stomach. I am careful to only take it with food.
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evening dear ones!
Seems like there has been a lot of conversation about a variety of topics this weekend! I have been resting so much my arse hurts! Managed to get some sleep last night with the help of sleeping pulls. Still could use a whole bunch more. Incisions are sore and get these odd sensations, like a zinger or electrical shock, for the lack of a better description . It is so odd and really keeps me on my toes!
Holly boo-you cracked me up with your dried black beans! Sounds like you are resourceful in many ways. Making work and daily rads work in your favor is quite a talent. I have been out all school year and now doubt I can go back until next year. They won't hold my job so I hope I can get another teaching position in August!
Axiom-love the yacht race story! I always think of you as being well put together and calm, however that visual just made me laugh until I almost peed!
Wren-good to see you ! I didn't know clothing was made for b cups! No wonder my double D's always pulled the man-tailored shirts I wore in the '60's! I plan on wearing button downs constantly now! Lol
Otceb-thanks for the gentle hugs! No one comes near me now and I needed it!
Bobo-nothing like the smell of pee in the morning is there! I don't miss those days at all! I remember thinking that this too shall pass and if they are still wetting their pants at night after they are married it is their spouses problem, not mine! Haven't heard that any still are-although DD2 is only 20 and dating so I wouldn't know.... DS2 pee smelled like maple syrup for some reason and I still can't stand the smell of maple syrup to this day! (He will be 30 next month!) Careful with the princess peeped pants! DS2 got the moniker paddy, paddy, poopoo boy and I had to stop that one very quickly-he will still shoot his sibs an evil look if they try to go there! Lol
Zills-I have been vit D deficient forever. My mother and daughters was/are vit d deficient! We all take weekly high dosage vit D. I once thought it was blood type, but DD2 has a different one from the rest of us. Oh, we all were sun worshipers and it didn't matter for us either way. We just don't store it in our bodies. There has been literature written about lack of vit D and cancer. Seems to be a lot of deficient D's who had a cancer MX. Go figure. Not sure how to lower my heart with breathing, but I will definitely look into it! I am coming to terms with the rads. I tend to do too much research (occupational hazard as I teach how to research) and read everything! Of course all the negative aspects always remain in the forefront of my mind! My mom didn't have rads so I know the outcome of surgery not getting it all and mets. I also read how rads aren't for everyone and I am not a great candidate with my poor family heart history and Herceptin, however I am tenacious aka a bitch when I want something and do believe in a mind body connection! I will bite the bullet, I am just pissed off that I have to!
Together-how was dinner? I hope you had a great time in spite of it all!
Nd-yes all 23 nodes were from the left side! I keep forgetting and try to reach for something-not too bright of me as I cause myself more pain! You would think I could get this together. Looking forward to being able to begin exercising it soon!
Grammar-way to jump on those taxes! I am so impressed!
Viv- good to see you! Glad your week from hell is over!
Anyone heard from gramwe? Always, Susan
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ok, just read my own post...time to turn off spell check! Grrrrr
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I asked my pain doc to order the vit D test for me. I'd heard it helps with fibro, muscle aches, lots of things. He agreed. At my lab, the low end of normal was 40. I tested at 17! I take 1200mg per day.
I am not a sun worshiper, just normal to from house, store,etc. but I am in sunny Florida. I've seen where some docs say we are much better about using sunscreen, but that wouldn't explain the northerners being low. I don't know
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Spookie-if you don't mind answering, what is your blood type? Just curious. My roommate lives in west palm. No low d that I know of, but that's not a question I would have asked her before. Lol.
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I'm A pos. why?
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I will say that when I started the D my fibro muscle pain improved about 75%. And did help with the draggy fatigue from fibro. That was before this beast, I'll be on the D forever.
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Spookie-I asked because I have found so many of us A+ gals have low D and many of those of us have had some form of cancer/precancer. Not scientifically based, but very interesting none the less! I have been on D forever and can not go off as my numbers have terrified the doc in the past! Thanks for adding to my informal talley!
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Spookie-oh, I had 5 different types of tumors in my left ovary in 2000. That was before taking D, so I don't think the mega dosage vitamin d has a connection to cancer. Yes, I have been blessed with 2 menopause experiences! Keep smiling, Susan
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Hi Wrenn, I am now taking 2000iu of Vit D daily.
So sorry to hear of your sore neck. You seem to have similar stomach issues to me, and Zills, but I think hers may be resolving now she's off the chemo. I sure hope so.
Hi Susan, I am sorry your arse hurts! Smile!
We should have warned you about the Zingers, and the Phantom sensations, all the consequences of this surgery. My surgeon explained it to me as two ends of the same nerve that has been cut, trying to find each other, somewhat romantic isn't it? The best part was when he told me that some actually do find one another.
There is also the "Claw" which I named because that was exactly what it felt like to me, a sharp thing that held on to my chest and under arm, it is usually only "invoked" when we overdo things, as a reminder to slow down.
Then there is the "Waterfall" inside the chest syndrome. It comes when you drink something very cold or hot. It feel like there is a waterfall inside and you can feel it rushing down. Very weird, and no one on any of the threads for the past year has been able to get an answer from their surgeon as to what causes it. I asked my surgeon about it, when I thought I was going to die from the sensation of a frozen coke going down. It was a brain freeze and a weird chest freeze at the same time. He just stared at me and blinked, I could hear a grasshopper chirping in the distance, nothing, nada, he hadn't a clue what I was talking about.
I still have the phantom itch and I don't like it. It feels like I need to scratch my nipple, but of course when I go to scratch, it isn't there and that isn't where the itch is either. I have learned to scratch my shoulder and nexk and it seems to distract me and the other itch goes away.
There are many weird things that you'll feel, it is an amputation, and we feel things just as people who have lost limbs do. One of my very best male friends from years ago, lost his right arm in a horrific motor bike accident. He swore his fingers on that side were cramping or itching, and he often felt like ants were walking up the non existent arm.
You make me smile, Susan. It's funny how people have that impression of me, but I am a klutz, like the day with the foob, and one of my ex husbands used to call me "Gutter Gums!" the name has stuck, and Colin will occasionally call me that. I can be the "Lady" but if anyone crosses anyone close to me, all my Scottish ancestors rise up! LOL
I guess it is more to do with the jobs I have had, and the shift work etc. I never leave the house without makeup, and I still wash my hair every day.
That was a comedy routine in itself, when I got home from the Hospital. Here in Oz, they get you into the shower the morning after surgery, drains and all, so when I got home I had to work out how I was going to wash and dry my hair. I could raise the left arm ok, and I had bought one of those stupid twirly metal holders that stick to the tiles in the bathroom with suction cups for storing your hairdryer. I surmised that, if it could be a holder for your hairdryer, it could hold the hairdryer while it was on, and I could move around in front of it to dry my hair...don't even bother..it doesn't work, stupid idea. I ended up, bent over at the waist with my right elbow tucked into my right side with a round brush in that hand, styling my hair. Everyone who saw me doing that, thought I was nuts, but it made me feel better!
M x0 -
Ariom, I've got the phantom itch also and a sore spot that feels like it's being rubbed. Both nerves I'm pretty sure. I also did the frozen esophagus once. The store was passing out samples of a smoothie. I wanted to finish mine and get to shopping, so I gulped. Big mistake. It felt like a heart attack and I was almost doubled over in pain.
I'm going to have a cat overnight Mon so I can take her in early Tues for her dental extraction and cleaning. I'm also being lined up for vacation coverage in Feb, so won't be cat deficient for long.
I have 2 evening babysitting gigs for this Mon and next. I took care of the older one when he was an infant. He is now 4 and his little brother is 1. She pays really well, which is nice. Be nice to have extra money. I went a little crazy in thrift stores last week.
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Viv, pink hair! Awesome!! Hope the coming week is much better for you!
Ariom, I really hate doing the tax stuff!! Every year I tell myself I will be more organized and do things monthly. And that lasts about 4 months before the piles start.
(You may well be right about the contact. I am so comfortable flat, I'm really not looking forward to wearing a bra again. Time will tell. I may be listing all the stuff on eBay at some point!!Here in the northern climes, sunlight in the winter is greatly reduced so supplementing is quite common. I am also very pale skinned and have a history of skin damage from the sun, so pretty much stay out of the sun or fully covered in the summer time.
Wren, sorry about your neck and shoulder, hope you can find some relief until your appointment. Glad to hear you will have some furbabies to take care of again.
Waving Hi to Spookie!!
Susan, I'd be even more proud of myself if I had been able to keep up during the year so I didn't have a ton of stuff to do now!!
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So weird that some of you are mentioning being itchy... lately that has been driving me crazy! I try to massage with oil when it comes on, if I am at home of course. It comes and goes for me. I thought it would be over that by now for me.
Wren, hope your neck gets better that is miserable for sure, I have alot of neck stiffness, i think I store all my anxiety there, and stress.
Viv, love the idea of pink hair! Cute.
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Hey Wren, isn't it amazing how many strange sensations we all have, yet we are not really warned about them before the surgery.
I have mozzed myself by talking about it, I've had the dang Phantom Itch all day!
I admire the work you do with the cats, they are very lucky to have you. I have a friend in Sydney who does emergency fostering of animals. We rarely see any cats here. There was one when we moved in, that used to visit, but I haven't seen it for a long time.
I haven't done much thrift shopping because of the heat, but my favorite one here is having another $5.00 a bag sale next week. They hand out shopping bags and all you can fit in there costs $5.00. It's a lot of fun, raises a lot of money for the community and everyone joins in.
I hope you got some interesting stuff.
gB, I start off really well with the tax stuff too, but it soon becomes one pile, and there is always 1 damn bank statement missing when I need it!
The great thing for you, is that your insurance pays for your stuff, so selling it on ebay, if it doesn't suit you is a real bonus. I am sure that's how I got all my new Prosthesis for such great prices from the US. We get only get one Prosthesis every 2 years here. Sigh....M x
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Hiya!
Talking about itches and stuff, does anyone ever feel like they have a tight band around them? I had that a couple of times this week! Horrible! The itching can be awful sometimes!
Wren I hope you get your neck sorted! That kind of pain is very wearing! I was pulling my le sleeve on this week (it was new) and tweaked my shoulder blade! It is fine now but hurt all day!!!!!
Susan sorry about your arse!!!! Sitting for too long can be very painful!
Bobo one of my boys wet the bed and I could tell immediately I woke up it's a certain smell! He only just stopped last year at 15 but a scan showed he had a very small bladder! Medication did help in the latter years!
Ariom I'm just laughing about the romantic nerve endings!!!!!!
Hope everyone else is okay today! I'm still in bed! Can't be bothered to move! Going to be having some juices in my meals as I need to get some vits in me!!!!!!
Viv xxxxxxx
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Hi Viv, or good morning to you, it's dinner time here in Oz!
Enjoy your lie in, you need it.
I just made an awesome soup in my Vitamix. I have Bobo to thank for insisting I buy it, she said I would love it. Between the Vitamix and my other favorite the Air Fryer, you'd think I was a cook, but no, I just love things made in a jiffy with no crap in them. These 2 appliances make it so quick and easy.
I'm a juice freak too Viv. I love fresh juices anytime.
I am laughing too, Viv, how daft is that? But I am just amazed that those nerves can regenerate and meet up again.
I don't have the tight band feeling, but I have read of many who do. Do you massage? I think the firm massage was the best thing for me, no adhesions and no scar tissue. That may be what's causing your tightness. It hurts a bit at first, but it gets better as you get it all moving and it keeps the skin really supple.
I hope you have a lovely lazy day. I am off to make Banana Macadamia and Coconut Ice cream for dessert. Talk soon...M x
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Oooooo I'm drooling at the thought of the ice cream! Yummy!
The sun is out today so I do feel I should get up and do something!
Have a great evening!
Xxxxx
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SGC,
How is snarkdom today? LOL. We have all been there. Even Ariom says she has too. And she has super good mood genes.
This is the group with whom to let loose when the emotions arise and need to be set free. Sometimes they have to be set free a bizillion times before we get some ease.
One of the best things my neighbor, also with Ariom'a super mood genes, told me, being one month ahead of me in dx, was that she had her moments of throwing herself on the shower floor and sobbing. That have me super permission to let loose when I need to. Still have a tendency to hold things together without being aware that a storm is brewing until my family or friends hear thunder.
Ok, can you tell I figured out how to write you all from my iPhone? I have been so frustrated reading your great notes and wanting to "speak." Now I figured it out. I cannot respond to the emails I receive. I must sign on to the website and find this forum.
So please excuse any strange words or spellings. Who noted that? Yup. I think a booklet of auto corrections that turn out so silly and even embarrassing should be published. (Ok. I just repaired bare assing, e.g. Whhhhhaaaat?!)
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Ariom, Yup those rogue puppies need anchoring and then the fake rogue puppies need some other kind of anchor. And you gotta have a sense of humor. I can just picture you all excited and running about to get a good photo of your hubby racing and not noticing the rogue puppy that has no feel to it meandering all over the place. I have had to do major adjustments on the sly in public more than once. Probably not as sly as I hope!
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Zills,
You know so much and offer so much. You have an amazing presence for dealing with stage 4.
What is gated breathing? I remember when my RO explained that, given the positive margin on my chest wall, radiation SEs could include heart and lung damage developing over time. And I wondered, but never thought to ask, about whether inhaling deeply would hurt or help.
I too was amazed how quickly I healed after the rads burns got so nasty. But, wow. From skinless to baby skin.
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ND,
Yes, hope Gramwe is ok.
ND, I too am on Arimidex. First week 3 nights just lying in bed, flat on my back relaxed and awake alllllll night. Change the meds to AMs and now it happens about 1x per week. Horrible hip and knee and finger pain the first weeks only at night. Now that is gone. Entirely gone. Only 6 weeks in. I know this changes over time. Up and down.
I asked for a baseline estrogen test and Oncologist said not needed. But how do I know the meds are working? She said if I don't get a recurrence. Well, geesh, ILC grows in strings and sheets. And it did not show up 3 years on mammograms. And not on ultrasound. And not on CT scan. And I have a lot a scar tissue from the radiation so who knows?
Did any of you have a manual exam a few months after to see if all was ok?
And did any of you have pleomorphic type ILC?
Bobo, you started a really refreshing group here. I am sorry you have had a major stretch of hell to live through. Glad you did. You had a lot of feminine warrior energy pulling for you here.
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Bundle up girls. Artic blast coming back. Maybe not as far as FL this time.
Gated breathing is holding your breath so your heart dips down. At least that is my understanding.
I too carry stress in my neck and shoulder. I love theragesic to rub on them. It's OTC and it does have that smell. Also you can get someone to press on the knot and see if that helps.
I tried my foobs on. I just laughed at myself. Too big. Is it worth getting A cup ones? Kids had to try them too.
I started the Miss Poopy Pants here. I don't say it at home. Just an easy way to say what happened.
I had the band too. Felt like a too tight bra that you couldn't take off. Sometimes it went around my shoulder too. Stretching helps and time. I still try to put my hands behind my neck to open up the chest. Housework and lugging babies or groceries don't count.
I don't see why you can't go back to work late in the term or maybe sub? Maybe you can push rads out until summer vac? I don't know how quickly rads start after surgery. I would think they want you healed. I started chemo three weeks from surgery. I'm sorry if I have you confused with someone else.
I think working helps you emotionally. I haven't gone back because I don't want to shortchange my children. I still get tired and crash around dinner time. And my house is dirty but I'm making progress.
Hello to all. Good football day. Need to walk and get the baby some cheese!
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Birdie: a Samba band? You are making me smile! Love the thought of you pissed and DH having to make it up to you. How is your neck? Obviously you should do all you're doing: looking into PT, advil, etc. But I was just thinking about this stuff they used to put on us at the yoga studio. It's called China Gel. I looked it up to make sure of the name. It was great for when I ever got a "cold in my neck." The other thing is Tiger Balm. That's more of a pomade. And it's staining! So watch out! But we actually have some of that in the house. DLLP puts it on every pain she has.
Viv, your hair is pink? You fit in well here. Susan, do not worry about the nickname: it is actually just between Z and me! And you!
M, just wanted you to know that I am definitely having the 'waterfall' and your PS is the crazy one. When I have anything really cold I can feel it going straight down. It's true about my PS. His assistant really said that. I don't know what to do about any of it. I did ask him to his face if I was part of the .7% but he changed the subject, obviously. I don't have a lawsuit kind of a feeling, or anything like that, because you sign a million things and you know infection is always a possibility. I just thought I'd have more control over whether or not I got an infection. Bleach wipes. Hired special cleaning service. Always clean pjs and underthings. Did everything right. So therefore thought I would not get one. I feel like I want to know more -- the copy of the hospital report, the exact names of the bacteria -- but also feel so traumatized, feel like I don't want to read it right now.
I assure you, M, you would not be looking and looking at your chest if it looked like mine to get to your new normal. Or taking pictures. I have not fully looked at it once, myself. But what I have glimpsed in the shower: it is really terrible. Togetherness, I so feel for you. And your beautiful lingerie. But for God's sake go out to dinner! And eat a beautiful dessert! Togetherness, do you know I walked back into work, and I work in the office of the president of the college, and in front of a lot of people, and I oversee tutors, and see students, and there are secretaries, and I have my own classes to teach, and I had DDDs, and now I am totally flat? And I do wear a scarf, or a shirt over a tank, etc. But I am not wearing foobs -- not possible for me at this point anyway, two weeks out from sx. But for me, foobs just don't make sense. Anyway, I imagine some people may be on to me, but no one has said anything, except for one secretary who commented on the fact that I was thin. The secretaries are probably on to me the most. But, you know, it's none of anyone's fucking business. My students don't care -- they are new to me, and all they care about is what's on the next quiz, and 'does he like me? Yes or no?'
Togetherness, I am your partner in 'ugliness' right now. But, fuck it! Go out to dinner, you beautiful girl! I hope it is Thai food. And I hope you bring me back some, because I love Thai food. On the subject of taxes, we must have an accountant because of the gayness, gay taxes are a sincere mess when you have children, I have no idea how to do it myself. XXX
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Wheww...trying to catch up too, you all move fast on here. Since I'm still away behind, I want to say a couple of things before I forget, then continue to catch up.
Bobo, I have/had the swelling after drasins pulled, found about later thast my OT considers TT that truncal LE, was my start of truncal LE and she's taught me how to work thgast area into my MLD. My grands, all 14 (12 boys, 3 girls, all under 18) knew I had to have my breast removed, and I sometimes wear a "bionic" boob! My DD's came up with that! Doesn't even upset or embarrass them at all!
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There is no way I can catch up with you all!!! F that!!!! SO just big healing hugs all around.
Fia, you don't need to hold back on our account.. think of us as therapy!
Granwe,getting a bit worried about you.. all is well with DD, the watermelon, OG and of course you.
Zils, nothing wrong with A cup prosthesis, insurance will cover it so may as well get it, you might enjoy wearing them from time to time.
PRB, there is no easy route in any of this, it is all scary and it is all hard as hell and we have to make to make all of these damn decisions in a very small time frame and it is ridiculously unfair. From what I know of you, you did not make this decision lightly so please give yourself a break!!
I had so much to say to everybody else too.. but just keep losing posts.. so F it... thinking about all of you.
We got more snow yesterday, 2-3 inches.. but it was so pretty.. it was the big huge flakes. Snowed a bit this morning as well and a massive cold front.is coming that I am not looking forward to. Hand is fine again yahoo!
Have about 6 peeps coming over for the football playoff game today.. Making pizzas and gonna try these steak and cheese appetizers.
{{{Bobogirl}}}
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oh, don't know if this is helpful for anybody.. but saw a story on the news a couple of days ago...
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oh and Spookiesmom, you can take your weather report and shove it!!!!
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Hello all ................. The photos above reflects my personality of the day !! DH came home Friday night with the flu so I have him locked away so I don't catch it . Holly boo I am thinking you are on to something with those beans . Perhaps you could just make T shirts with beans glued inside like a foob !!! LOL . Bobo so glad to see you are back !!
Hell something is wrong with this damn keyboard again ...posting before I lose it .........arrggghh
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SGC verrrry interesting. Had a squamous cut from my arm a few years before bc.
Idesim. Sniff. Snifffff
You asked me to send some sun
Sniff sniff
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