Can we have a forum for "older" people with bc?
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Marie, ROFL! 1-800-Lawyer
-- now THAT would work!Here's a sleeve designed by a hospital nurse, specially made to protect us when we're in the hospital. You can ask your hospital to consider ordering them for their bc and dialysis patients. Or order one yourself for your forays into the medical world. (I forget what they cost individually, maybe $10 -- they're basically made to be sold wholesale to hospitals, but you can of course reuse them). These really do get noticed.
Be well!
Binney0 -
Thanks Binney, I was trying to find that link. I had thought about wrapping the new neon duct tape around a sock or sleeve.
You know when you have allergies they put a red bracelet on you? One anesthesiologist came in and asked me " what is that, what does it mean " ... hardly a confidence builder. I asked for another anesthes and the doctor agreed.
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Lefty/Binney/Maire.....the fun just never stops huh !!!!! Hard to believe so many people do not KNOW....and scary when we are talking anesthesiology and the like. Maire....I think we should have the sleeve with your 1-800- Lawyer on it.....and then the reason could be in much smaller lettering. Re: allergens etc. My allergy to pollens etc. came back because the chemo apparently destroyed those cells...now I'm thinking...I have an allergy to tetanus and wondering...maybe I don't now. Those cells may have been disrupted too. Don't know if I want to find out the hard way though....I think I'll just keep claiming it.
Mikita....thoughts and prayers for you still. Healing Hugs.
Hugs,
Jackie
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Nancy, there's a process in some parts of the U.S. where hospitals are trying to get standardized colors of bracelets for ALL healthcare facilities. (This is because, since colors can vary from institution to institution, a registry nurse in one Eastern state just about killed somebody because the color of his alert bracelet meant something different to her.) The red allergy bracelet is one, and I forget what the others are. Naturally the movement to get standardized color-coded hospital bracelets does NOT include one for "restricted extremity" (which is the fancy name for "touch this arm and you die!" and includes people who are on dialysis so can't use the dialysis arm). So in Arizona I've been prodding the Association of Healthcare Facilities to introduce a new single color for that purpose. They went so far as to decide on pink for our color, but so far (almost two years later) they haven't started using them or educating medical personnel about them. If all you nurses would get behind it in your states I think it would be a great way to begin to educate our healthcare providers about lymphedema.
Dream on, right?
Hey! I'm an optimist!
Binney0 -
Binney, good idea, BUT some (more likely males) are color biind and do not like to admit it. Just an added "detour" in a very important issue of medical education.
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Well, here it is Saturday again, so I poke in to write once again, I read all week long and keep up with all of you but find myself really time challenged during the week.....thanks for looking for me JO its nice to be missed *big hug*
I am reading with interest all of your notes about lymphedema.....because I am very actively involved in an area of Nursing that deals with patients like *us* every day, for those of you who dont know I am a Recovery Room Nurse who also works in post recovery and preadmission testing at a fairly large Surgical Center here in Illinois. I realize we are only a small grain of sand from a huge ocean at our facility but we are and have always been very cautious about talking to and marking ladies with lymphedema or potential for.....I am currently getting involved in Breast Patient navigation and now Im thinking I will educate myself a little bit more and give an inservice to health care personnel that I work with and then maybe even offer to present that same seminar at the hospital.....maybe I can make a little difference. My cousin has lymphedema from her surgeries and its very well controlled but can and does rear its ugly head too, seeing what she went through is what started my interest several years ago, now I have my own interest at heart too as well as all of yours.
Saw my BS for my *still oozing* SNB incision.....I want to get it cleared up before we go on vacation in two weeks or else I am going to have to stay out of the swimming pool, and I really really dont want to do that, I even bought a bathing suit for heavens sake. On another note, she was happy but not surprised at all that I am practically symptom free on Arimidex (save for my poop issues.....which I think are nearly resolved now ) and said I should be able to say Im symptom free for a long time to come now that I have my supplements down right and am exercising and on my feet all day.....
We have our 3 little grandsons this week end so we are off to Brookfield zoo while the sun is shining....a little more time on my feet *s*
Oh ....one more thing.....my meditation and mindfulness class is really starting to be a benefit to me.....very very good to live in THIS moment and not those to come or those that have been....I would be happy to share more on that if anyone is interested.....I tend to be a worrier so this is a HUGE help for me.
I love each of you and think of you daily and also in my prayers.....be happy and healthy
Jan
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ps......
I am also doing some IV education as we obviously start IV's on EVERYONE who comes our way.....and....as Marie said, its very helpful that I was a Pediatric nurse the first 20 years before I moved into Recovery and LOVE those little butterfly needles !!!!! I wish I could start IV's for ALL of you......maybe there would be a position in this world for a traveling IV nurse *grin*
really going now......
jan
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Jo, good for you! I wore a bracelet before I developed lymphedema in order to remind MYSELF not to let them use that arm.
Now I have bilateral lymphedema, so I wear a necklace instead. Mine's from the ACS's "tlc" catalog.Jan, what a great plan! Do check out the "What We Need Healthcare Providers to Know About Lymphedema" page at stepup-speakout.org -- there's a printer-friendly version there as well. Also, of course the lymphedema Position Papers at the National Lymphedema Network, www.lymphnet.org
Dr. Stanley Rockson at Stanford has done a survey of U.S. medical schools to find out how much time is spent teaching about the lymph system in a doctor's entire education. Some schools don't teach about it at all, but the AVERAGE amount of time over the course of three years of education is a total of 15 minutes. (No, that's not a typo -- wish it were!
) Our nursing schools are not much better (as those of you who are nurses already know). Which explains a lot.Of course, lymphedema is not treated by doctors, since it doesn't involve either drugs or surgery, so that's part of the reason it's not taught. But as it is, our doctors are not likely to diagnose it quickly (or at all), to know what the proper treatment is, or even to know which therapists in their area are properly trained. Even more of them can't diagnose truncal (breast/chest, side or back) lymphedema, and a great many don't even know that's a possibility. Even PS's who do reconstruction rarely understand there's a risk for abdominal lymphedema from some of the flap surgeries, so those go diagnosed as well. Too often, if our doctors do refer us to therapy, they feel no responsibility to oversee that treatment or our progress. Which makes lymphedema one of the more serious medical conditions that involves strictly do-it-yourself diagnosis and treatment-seeking. GO, JAN!!!
Be well, all!
Binney0 -
About the lymphadema - since I only had the sentinal node taken out, I haven't worried about the problem, except I have asked that blood draw and BP be done on my good arm. Is there a certain number of nodes removed that make lymphadema a threat?
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All of us are at risk. We have many women on the Lymphedema board who have it after having only a single node removed (I'm one of them!
). Not to panic! Here are some simple risk-reduction practices that can help (but it's important to remember that the risk is life-long):http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
As I mentioned earlier, our doctors are rarely aware of our actual risk and may understate it, ignore it altogether, or even deny it. Baloney!
Binney0 -
Binney - I thought you said one node. I was in a hurry and didn't go back to find out for sure. Rats. No one has ever mentioned anything to me except about the BP cuff and blood draw. The dentist used my bad arm for BP. Guess it didn't hurt me...that time.
And, why are the veins in my bad arm so enticingly plump and visible and the ones in my good arm so shriveled and puny??
Thanks for the site info.
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Jan,
Thank you so very much for whatever you do to educate people about LE! How great of you to take that one. You must live near Chicago. I lived in Peoria when I was first diagnosed in 1993. Enjoy those kids!!!!!!
Susan B.0 -
hi jan,
i have been following everyone's experiences and information as faithfully as if i were preparing for a life and death exam, and maybe i am. as a nurse, you see things that few of us even know about until it is too late, like pediatric needles for those of us with microscopic veins.
i was wondering what medical facility you were at, and then you said you were taking your 3 little grandsons to the brookfield zoo. the brookfield zoo! i took my children there, and now i also take my little grandchildren there! where in chicagoland are you? what hospital do you trust? (that is a serious question.) i live on the north shore, but for serious medical stuff i guess i would go to northwestern.
i still go to boston every year because i started there 30 years ago, much to the chagrin of every doctor i saw first in chicago, all of whom called a lumpectomy an 'experiment.' i have to start thinking seriously about finding someone at home because even my doctor is muttering something about retirement.
about 5 years ago i developed brachial plexopathy, complicated by lymphedema 2 years ago. do you know of any place in our area that might have even heard of this double whammy? i would love any information might you have.
i am in florida right now, coming home soon; i guess it's safe if it's not too cold for the zoo?
thanks,
barbara-
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jan, i forgot to mention how much i admire your incredible courage. you actually tried on and bought a new BATHING SUIT at this time in your life?! wow, you are some kind of woman! i stand in awe before you.
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G'day chooks, and thanks for the comments, Jackie and Maire. The small town (pop 23,000) I live in only has a Gov't run main hospital + 1 small private facility and over the last 20yrs, the system that runs it has been run down to the point that there is no surgery done here these days and all babies are born in another town 30 mins away. I DO remember a certain young Dr here in '95 who was called to put a canula in my arm pre chemo, boy, his big brown sympathetic eyes just hypnotised me and I would have let him stick me with a knitting needle as many times as he liked! They should have kept him around just for the chemo ladies!
I often wondered afterward, what got up that Doc's a$$ that day too! Maybe he had a good solitaire hand on the go--who knows.
When I start to get that 'tight' LE feeling coming on, I polish the copper plates that surround my very old doorknobs. They are about eye height and I have to hold my arm up at shoulder height to do it and while I am doing the little polishing motion--2x10 doors-- I find that the swelling and tightness drain away. This was discovered by accident of course, not a medically prescribed remedy!
Ever since I had the mx, my rhs--chest/arm/ shoulder-- feels 'bruised' down deep, while the surface is really numb, and if I do get a whack there I feel a 'burn' in that area for quite awhile afterwards. So, I find that I have to protect that side from bumps into walls/shelves/doors etc., and also the unthinking--usually males--who think it is quite ok to slap, tap or otherwise poke me in that area. In fact, when I meet some of these people, I try to keep a good distance from them in the name of self preservation and this is after flinching, and explaining why, many times. Aussie guys are too slap happy!
Binney you are doing a good job, it's good to know we have someone on the 'inside.'
Sheila.
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Since we are on the topic of LE, what precautions can I take for an air plane ride? I do not have LE and do not want to get it, but as I mentioned in a long post before, I am very much at risk.
I asked for a pre surgery referral to measure and consult about preventing LE, but the "therapist" I was referred to, had a waiting list of 3 weeks and said she would phone me. This was in November.
Thanks for everyone who is helping educate about LE and getting the word out. HUGS, Nancy
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Thanks Jo. I can get a nurse friend to measure for me if worse comes to worse. I am thinking of the Vegas reunion the end of September. Maybe I can in touch with the "therapist person" before that for a double check on measuring.
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Nancy, you need to get a surgical lymphedema sleeve to wear while you are on the plane. Biggest problem here is that you probably need to be measured. My Avon navigator measured me and I was able to order a sleeve --- just called up. They would like to sell you one that is custom-made, but I did not have the time or money I felt ..... and while I needed the sleeve I did not think a custom-made one would be any better than my navigator's recommendation which was just to order a fairly basic standard Jobst sleeve.
I did fine with mine....however, again....who knows when or if lymphedema will happen to you. I believe it's better to ere on the side of feeling that it will and doing what you can to handle that.
I imagine you could just find a web-site for lymphedema sleeves ( I think mine was around $65.00 or so ) and I felt it was good insurance.
Hugs,
Jackie
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I had checked with my insurance back in November and they said I can submit the bill IF a doctor writes a script for it. I did that for my "cranial prosthesis" (wig) and got a check for the total amount.
$65 is well worth the price to avoid problems. Thanks for the input.
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Since the proper fit is really important (a poor fit can cause lymphedema instead of preventing it
) it's best to find an experienced lymphedema fitter to help with measuring. But once you have the right sleeve, ordering off the web is usually easier and more economical. Here's our web page about fitting for lymphedema garments, with pictures to give you an idea of how it should fit:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htmIf you wear a sleeve, you should also wear a glove, or at least a gauntlet (fingerless glove) so that any swelling in your arm doesn't get trapped in your hand. Juzo and LympheDivas sell them in a variety of colors, if that's important to you.
Wear your garments for any travel, even longish car trips. And for exercise or any strenuous or unusual activity. If you wear them to doctors appointments and blood tests, medical staff are less likely to give you a hassle about using that arm.
If you're reading this and thinking you'd rather take your chances on a plane trip and not wear them, we like to suggest that you get them anyway, make sure the fit is good, and at least take them with you in your carry-on. That way if you run into any problems you can deal with them. Unexpected swelling can sure ruin a vacation (this is the voice of sad experience talking -- would you believe arriving in Sitka, Alaska, with a swollen hand?!)
Other tips for avoiding lymphedema when traveling include staying VERY well hydrated (dilutes the lymph fluid and keeps it flowing), asking for help getting luggage on and off conveyor belts and overhead compartments, wearing your garments when you're packing (since you're going to be slinging suitcases around then too), exercising your arm and hand often during the flight (legs too), and doing a few deep abdominal breathes at intervals during the trip (helps pump lymph fluid). Wear your garments after you land until you're settled into your hotel (an hour or two). If you're going to the beach, be careful to avoid a sunburn, and if you're outdoors a lot use insect repellent to avoid bug bites.
It's hard to take all those precautions and still remember to have a good time, but that's every bit as important. So make your plans ahead of time and then give yourself permission to ENJOY!
Be well!
Binney0 -
All right guys.....I am totally freaking out right now.....I have had no issues with LE nor did my drs mention any risk to me.....I am leaving on vacation in just over 2 weeks and will be flying twice....not terribly long flights but flights none the less.....now I am pacing and wondering what if anything I should do....and what I can get on such short notice.....am I over reacting ? All my friends here.....the *nurse* needs help.......
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Maybe you can find a very small girdle? Or a large balloon (cut the end off, of course)? Or a surgical stocking?? No, huh?
I'm with you, Nursie - I had no idea this could be a problem for us'n!
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Jan,
I had two nodes removed in October and was told by both the surgeon and the oncologist that there was very minimal risk of problems. Said to be careful always of the lifting and no BP readings or blood taken from that arm. There was no mention of any sleeve for flying........... I was under the impression that was for people who already had a problem or were at high risk for a problem. Did I misunderstand this? Would love to hear what others have to say. Thank you so much.
P.S. Jan......... we have done the Pananma canal cruise too and I think you will enjoy it ! Really amazing when you think of how long ago it was built.
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I knew I could depend on the *girls* here to help me out......I'll still keep checking to see what anyone else can help me with
I did a little research and see the same things you mention hmm (lovely name *L*) and neither Dr mentioned flying but both know I am going....the info I found said if no history of LE and flight is less than 5 hours shouldnt be a problem. BOTH Drs are getting a call tomorrow so I have time to make a decision and do what needs to be done.....
We are SO EXCITED to do this cruise....all 4 of us that are going turned 60 this year and it is the husbands dream to go....now its to celebrate other things as well....
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I am beginning to think there are going to be more medical devices on me than real body parts... Not really, but a sleeve, glove, wig, glasses... shall I stop while I am ahead? Sorry if I needed to add a touch of humor to a serious discussion. I am going to call my insurance company tomorrow for an LE therapist recommendation then get Dr to write a script. My pcp is easy to deal with for referrals and I have educated her to some things concerning LE risk.
Thanks again for the info. Nite nite, sweet dreams. HUGS, Nancy
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am i the oldest among this group??
i turned 72 in october 2008 i had mammogram in october '07 and nothing was noticed. i was not very dilligent about self examining. but i did one in june '08 and found a lump in my right breast. took a week to digest this-never telling my husband of 50yrs. then checked in with the pcp and started going down the long, long road. mast in aug '08 then fec chemo. couldn't decide whether to go for rads. after much agonizing felt i might as wll go the entire way as at present i am in very good health(except for the bc), and would feel real bad if it came back later and i realized that i had not done it all... so 2 weeks ago i finished rads. now my hair and energy is coming back. i am on arimedex.for 5 years. my se are joint pains, but i find that if i go to my pilates class i can manage the joint pains. oh i am so glad to be over the md and hospital visits. and summer and bright sunlight is coming-what a good time to feel beter.
i just posted on "Roll Call" message board and someone there suggested i go here. so here i am, i am flying to france to visit with my son and his family and will be on the plane for 8 or more hours. i do not have lymphedema but have been advised to wear a sleeve. last week i took a short flite to minnesota and wore the sleeve then,also. i would rather be safe than have trouble with swelling. fortuneately i had lots of miles and so i am going transatlantic in business class. that should make the trip a bit easier-more space, better reclining seats,etc.
btw, the picture of me is before the bc
i
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hello pottergal !!!! a pleasure to meet you......we are all the youngest and or the oldest depending on which day of the week or what hour of the day we are posting....so once you have found our *seasoned* group your age is no longer even a thought....we laugh with and at each other and our aches and pains, and poopy problems and we love and support each other with wisdom and experience, and we have become a very close group in the short time we have been *together*
Have a wonderful and safe trip....enjoy your visit with your son and his family....be healthy and happy and come *play* here with us whenever you can.....
jan
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for jan and nancy and hmm,
no one ever mentioned to me the le risk about flying for 28 or so years. and then, on what was at least my 100th trip since the radiation was over, my arm and my hand blew up like a stuffed sausage on a trip to arizona. it was blown up before i ever left the plane, so we can't blame the heat.
listen, don't believe that pap about 'minimal' risk. you don't have to take any risk, because if you are the one in whatever, it is 100% disaster. doctors know less than any of us about the risk for le, so their opinions here are not based on established medical knowledge. i believe they call it 'anecdotal' when we do the same thing. they are not the ones who are going to be saddled with le forever. once it happens, then there will be all sorts of inconveniences you will have to deal with, so the task of finding a sleeve is nothing by comparison.
i would suggest a store that caters to women with mastectomies, usually a lingerie store. call and ask if they have a fitter for a sleeve, ask if you need a script and tell her you are going to fly. in my experience, that should bring a quick response.
jan, in skokie, at the juncture of skokie road and old orchard road, just south of old orch rd, is a big store called schwartz's lingerie. they have a great fitter there named sandy. you might want to give her a call if that location is familiar to you.
please ladies, whatever you do, don't do nothing. don't fly without the sleeve. when i asked my rad onc why he didn't warn me about flying, he answered sheepishly that he didn't think it would happen. there you are.
good luck and fly safely,
barbara-
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welcome potter, I assume you work with clay and kilns? I am 63, 62 when diagnosed last May, widowed 6 years, live in Virginia near DC, sold house in Pittsburgh after 36 years, moved and rent a nice apartment near my (our) only son who was married 3 weeks after my diagnosis. I quit work when my husband was ill and never went back - you can call me retired as I get social security and go to bridge at the senior center. OR you can call me bingo lady, as I go most every Friday and Saturday. Cut out the Monday and Thursday nights when I was on chemo and it was the furthest drive. My husb was from Manchester, NH.
Nancy
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When I was dx'd back in 2004, I started on Femara but took advantage of a patient assistance program which covered all the cost of the medication. They would send me about three months of the prescription by mail and I was pretty good on that plan until I ended up getting a job which took my income way up and made me ineligible for the assistance plan. There are other plans for people that have insurance that can fill in the blanks if you can't afford the better medicine. I don't remember the name of that type of plan tho. Do some research on the plans that might be available. If my employer didn't fire me I would available a nice list of resources for you all.
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