Can we have a forum for "older" people with bc?
Comments
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Dear Julia,
My name is Theresa, you posted a nice note to me a while back. I don't know if I am really allowed on this discusion site or not since I do not have breast cancer but it was my mother that did. During taking care of her I did have a scare, but luckily it was a scist almost 2 inches but benign thank god. Never told mom, she was goin thru enough. I have noticed though that alot of these women need help with their drainage tubes. I made a device for my mother. I don't even know if I am allowed to tell about it on this forum?? Her doctor really liked it and tested with patients. Please let me know if I should give my web site or not, I don't want to be kicked out.
My mom has the beginning of demensia or something, I don't know how long chemo brain lasts, but since she went back home after her recovery she thinks I take things, silly things like her shoes or even underclothes that I could never wear. Is this common? I take her groceries and put the heavy things away and ussually don't go even to the rest room I just leave. Mom and I have always been best friends and casino buddies, now it just seems like she is gone or someone elses mom I miss her and want her back.
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So sorry to hear about your Mom Theresa. I hope and pray she will find her 'old' brain and you two can reconnect (any chance she might have had a slight stroke following her surgery?)
No one is disallowed here - we are all here to help each other. But perhaps your invention might reach more people on a different thread - to do with drainage. Maybe you could make one? (a thread that is)
Cheers,
C
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Hi Teresa, has your mum been tested for Alzheimer's? It's possible that this is what is causing her to be like she is. If she has it, and it is still early stage, they now have a drug that can slow down the progression.
You are welcome here anytime, and I don't think it is against the rules to give your web site address. Love n hugs to you and your mum. chrissyb
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Have you ever noticed that when we have a mishap in public (even if we are hurt), the first thing we do is look around to see who saw us do whatever it was we did? LOL
Granny Dukes, I'm glad you finally found the right doc. Love ya, Darla
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Hi Theresa, good to hear from you, so very sorry to hear about your worry and your mother's situation. I sympathize so much, I also experienced that devastation. I strongly advise you to take all the help you possibly can and take the very best care of yourself along with your mother. I agree with Chrissyb and C and there are medications now that help and delay. I wish your mother and you all my very best wishes for your good health. About your invention, it's very clever of you and beneficial. It certainly is a wonderful endorsement if the doctor likes it and is testing it. Do you think you should contact a patent attorney who could do a search and you could possibly obtain a patent? Good luck with that, it's very exciting! Take care.
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Yes Granny I'm delighted to hear that you like this doctor! PG she will have all the right answers and take all the right steps for your good health. All the best!
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Hi Teresa....Whatever "happened" to your Mom, it might be just part of the aging process when dementia comes along. My Grandmother did the same things....Their personality just changes, gradually....And any good Doctor just knows from the symptoms, that their mind is just not sharp anymore. My Grandma had to go to "Assisted living" because she could not live alone, after her heart attack....But that "trauma" is what started her "forgetfullness"....She never did get better... But you just have to "go along" with these changes......And I'll tell you, they are a lot harder on you than on her.
And maybe it WAS Alzhiemers, but dementia is still devastating, no matter what it is. She would hide her lipsticks in a little velvet Christmas Tree I made her, & call me 7 times a day, forgetting each time....And then she would put 2 dresses on....But you know, I loved her so much, & taking care of her, showering her & laughing together....This was maybe 15 years ago, & I still cherish the memories I have of her....So it will all be alright....somehow.
And you can post on this thread whenever you want! We're all old enough to have either been through, or know someone that has done just about EVERYthing!
So honey, she can't help what is going on with her....maybe there is a medication, but I don't know. I just know it hurts... you probably more than it does her. Take care of her.....Jeannette
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Julia,
I have 3 older sisters and a younger brother, 2 in Texas, my oldest sister in 1hr away and a brother 1/2 hr away. My oldest sis had a bad car accident 4 years ago and had to be sent to New York for bone regrowth surgery, and now she is walking and back to teaching. Now that she is ok and mom cancer free, she is going to make an apt. with moms doctor to see if they will do some testing for Alzheimer's with out her knowing if not, atleast without her knowing I know. I live only 15 mins. from mom and I have always taken care of her. The other work outside the home or are out of state. I am hoping for this to happen sooner than later cause I would like to continue to help her. Mom even fills out the Hepa forms then conveniently change last number of my phone number!
About the invention, I do have patent pending and a attorney. I started my business online a couple months ago. www.helppersons.com I hope to make some money from these pouches to then be able to make rehabilitation clothing like what I made my sis and anyone else that needs something special, I love to do that and it has kept me busy and helps me concentrate on something other than hurt feelings from mom even though she can't help it.
C,
I will tell my sis about possible stroke too. How do I make a thread? I did my web site but I have not ventured into any of that yet. I use to be a printer so web site was fun to get back into but its been 15 years.
Chrissyb,
Thanks to you too! Hey all of you this is great, I feel so much better just talking you can't imagine how greatful I am. Now maybe I can give my big sis a break, she's always trying to protect and console me.
Thanks to you all have a good day you make mine better!
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Dear Jeanette,
Wow, you are right, I was thinking my mom would not be the same. She even called the police so many times to find her remote control that they called me with her standing there. They told me if she called anymore they would call adult protective services on her. I could go on. Its hard people say that its the one thats the closest. My only repreve sometimes is its just me right now and not the others at the time I don't want my other siblings to feel this much pain. I like talking here cause now I feel I can show them I am stronger and its is not bothering me as much to ease their minds.
Thanks
Theresa
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Hi Theresa....When I was dealing with the same situation, & all the tests, it just broke my heart. To put my Grandma through this, was harder on me than on her. They would ask her questions about pictures....like "Is this an apple?" etc. She didn't know, & kind of laughed it off, but I swore THAT would be the last test I put her through. We stopped & bought hamburgers on the way back, & had a "picnic."..... And in the hospital after a fall, she had a "mini-stroke" and it sunk her further away from me. Whether they were "spells," or "strokes" or what-ever, they just come for no reason.....And you just have to be there for her. And yes, it will hurt you so much, to watch this happening....but you are there to help take care of her.
My Grandmother eventually "forgot" she had a Son & Daughter......but she had me....And it was up to me to take care of her, like she was MY daughter. If you can understand what is happening, it will be much easier on you. Because, you see, your Mom doesn't really know this. It won't "bother" her as much as you......
We're always here, if you just need to talk.....xoxoxoxoxo
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Chevyboy,
You make sense, my neice can sometimes help and divert my moms attention to a more pleasant atmosphere than us kids can. I sometimes try to think back about my grandma and how me being the youngest could not see or understand why my mom and aunt talked so poorly sometimes about her cause I saw nothing wrong she ever done. May sound silly but I now believe its some how like the cycle of life, on how the younger take over. I guess God even looked out for us with neices and grandaughters to help us thru!
xo back at you
Theresa
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Theresa - I meant a thread on this discussion board. From the help page, I've copied the following:
How do I start a new Topic...?
First, ensure you are logged in to the Discussion Boards. Once you are logged in, you can start a new Topic by navigating to an appropriate Forum. For example, if you are a woman who is concerned about breast cancer and you have a question, you would navigate to the "Not Diagnosed but Worried" Forum. Once there, click the "Start a new Topic" button to begin writing. When you are ready to post your new Topic, click "Submit".I just think if you word it right, it will reach more women who would be benefited by your discovery...
Best of luck with your Mom,
C
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hi sistas
thanks again for the prayers about dr#3. today when everything sunk in i cane to understand what is really happening.i know that rads and chemo follow along with the meds.I DONT WANT IT. and my internist and gastro dr called me today telling me once agin they feel i am strong enough to do both.so does my family and all my friends.i know my body very well i dont think so.i have everything you can imagine wrong with my stomach plus sensitive to every antibiotic,i danced for 30 years and fell about 30x.my body even though i excercise everyday is not as strong as the drs thin.and i am scared shit of a crazy reaction because that does happen to me.i had such a bad case of shingles 10 yrs ago i was in the hosp.7 days.in the eyes.weird.
im rambling again.thanks for listening.God bless my sistas
K
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Theresa, the testing for Alzheimers is quite simple as it usually is a CT of the brain to check changes. The CT will show brain structure changes that are more than age related changes. Hope that this can put your mind at ease a little more. I know this as my father in law was tested and diagnosed twelve months ago.
Love n hugs to you
chrissyb
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In the end Granny it is you who makes the final decision...
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GD, yeah-it sounds like you found the holy grail of docs and AussieS-you had me tickled pink with your "face plant" story. And of course I screamed on the way down and I am not a screamer. I was just as surprised to hear my own pitiful voice. AND noone came to my aide! What it is about decking yourself on the concrete that is so funny (if no major injury of course). Good god, the pain has move all the way to my spine which is sore today. We are having ferocious heat but the afternoon's have been broken by amazing thunderstorms. These are the kind i remember as a kid. Today, I stood on our under deck with the rain pounding down and the lightening and crack of thunder almost silmultaneous. I could smell the ozone and felt engulfed in every flash. Then went inside and of course, the lights went out. Talk about a chinese fire drill. it was pitch black and i am running in circles with two dogs trying to remember flashlights, etc. :" Luckily, I have a huge distressed wooden coffee table so I could "Helen Keller" my way around the living room. I had forgotten about this event as it used to happen every storm and we had our own genny for the house-it was so common. Finally figured out that i'd probably fall over something if I kept moving and groped my way to a couch (not sure which one) and just sat there. Too freaking old and sore to "fire up" the entire house!! But first things first and I crawled to the kitchen knowing I had to save the ice cream. I ate all of the ice cream that was melting in the fridge! YUM! Sweet dreams all, SV
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SV, What in the heck are you doing up so late? I got up just a minute ago to go to the bathroom and decided to check and see if my sister ever got on line last night since we had set up a time to IM and she didn't respond so I went to bed for a few mins of reading and fell fast asleep. I couldn't get to Yahoo so then decided to check out the BC boards and saw you had posted just 1 min ago. It is hotter than heck here also, but I am sure not as warm as NC since you are south. It seems to be hot everywhere except for San Francisco. The dog is looking at me wondering what I am doing up and I agree so am going back to bed. SCLisa is right Granny, in the end it is your decision......give it a few days, listen to your heart and God will help you decide. Sleep tight, everyone.
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SV, you are my kind of Lady. I think I will pretend my power's out and go save the ice cream. LOL Darla
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I hope God will guide you in the right direction Granny. Please have in mind God also gave us doctors and you seemed to have a good feeling about this one. So perhaps you might want to consider having faith in her knowledge and wisdom. The only important thing here is that the right course is taken for your good health. I heard once, indecision is worse than a bad decision ... I'm not sure about that ... I do know that when it's just impossible to make up your mind and that's just an awful, gut-wrenching state, I think then we need to go with sound reasoning, intelligence and faith. God bless Granny.
Now I need to save the ice cream from the meteor shower!
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I set my alarm for middle of the night to catch the peak of the meteor shower. But the sky was totally overcast, not a star visible :-( So I just went back to bed.. no ice cream! Did anyone see it?
pam
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Let me enjoy the earth no less
Because the all-enacting Might
Which fashioned forth its loveliness
Had other aims than my delight.
~Thomas Hardy0 -
pj - we had a friend over for a late hamburger dinner and watched Venus and Mars set, Jupiter rise and quite a number of meteors ;-) It was a fantastically clear night; we summer in the country by the ocean (north of Vancouver, BC Canada) so had a v good view. I conked out about midnight. My DH stayed up til about 2 but said there were not so many more. Maybe if we had got up just before dawn?????
C
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hello sistas
im in PA enjoying my family and trying not to think about bc...i havnt played the tape yet for the.too busy playing with my great grandson..its such fun being a GG..
thank you soooo much again for all your wonderful advice.I know God will help me with all this.Im going for another mammo on tues and possibly ultra sound.then wed onc.but im not thinking now.brain freeze for bc...lol
hugggggs to everyone.
K
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Oh man, I watch Oprah today (yes i admit it) rare event for me and only bec Julia Roberts was on touting new movie and apparently amazing book called "Eat Pray Love." Ok any of you read it. I feel like such a schlep as I thought if I ever got some amazing disease like cancer, I would write or do something earth shattering that would rock the universe. NOPE, been sitting on the couch eating ice cream. And this woman goes out and does this trip (like an early bucket lst-soul list something) and writes this book about things i had done before I was twenty. Like ok, I have not read the book but-the smarm that was oozing on the Oprah set was like OMG. So i guess we all have to read it together bec you are supposed to read it with people you love. How do these women have the midas touch-I have set the bar way too high-if i cannot write "Atlas Shrugged" I just simply won't write. i got paid to write for years and now my brain is empty. i mean if ya get cancer, aren't you supposed to like do or write something profound. Or like train like heck and run some freaking marathon. i am still trying to recover from chemo and gaining a ton of weight and generally feel like a blob on the earth. Big issue is that after the chemo, i cannot go out in the heat or sun so i am a prisoner in the house in the daytime!!! A true vampire and i am not even making money off of that. A good friend just got a year clear on colon cancer. So we all celebrated. OK i was play acting-I am so terrible. I mean I am so happy for her but I do not want to be a "anniversary" marker - I just want to forget that I even got cancer. I am a pink ribbon failure. And i went out to an expensive homestore in town today and I bought a bought a bunch of cr*p that I did not need.Got the rugs and everything in the house including new coffee maker that costs three times as much as it does at Walmart-ERRGH. And i bought a rug and now need to buy a whole new house full of decor-amazing that ya buy one nice thing and it show you how much garbage ya really have in the house. I just wanted to spend money to get a "feeling of control" and to have shop people waiting on me-just to feel special for awhile. Now that is pitiful! Lordy, people are writing books and I need a therapist! XXOO, SV
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SV, good for you. Sometimes it feels good to spend your money on something besides co-pays, etc. Darla
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"mcbird!!!", Darla, don't ask but your name just makes me happy, hope you are as happy and well.
SV, I'm reading your words and I'm thinking about your regatta photo and a wind swept SV enraptured. There's a fly in the ointment. You're talking about failing, and cannots and that you are a schlep!!! What up babe? You are everything you want to be!!! Anything further on owning your own tall ship? I hope you don't think I'm critizing or lecturing, just yackin friend to friend to friend ... I'm queen of the over-eaters, I know what you're saying but IMHO I think this consuming thing is getting you down more than anything else as I know for sure you are aware as we all are that over-eating does not pave the way to good health. If we could lick this little bugaboo, I think we would be so much better off, don't you think? I only wish you the best of good health.
Take care, have a great weekend!
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Good morning to all of you. They are promising us another hot humid day in Cincinnati. My friend with the boat has decided it is going to be too hot to take her boat out so unless I feel like sitting and sweating in the sun trying to read a book, won't be getting much of that today. I know you aren't supposed to go in the sun with chemo, but I am doing it anyway, just not overdoing it. SV, Did you know there is a 70 sunscreen? Wow. I would think with that you would not get a bit of sun. Speaking of vampires....that is what I am reading now, Charlaine Harris's Sooky Stackhouse series.....the tv show which I have become hooked on True Blood is taken from the books. Problem is the show doesn't follow the books exactly and I find I become easily confused and am always calling up my friend who got me the books and read the entire series with questions like Why is Lamont still alive?, Did Tara really like that Franklin guy?, etc...... Yeh, I need to get a life. I love reading and don't get to do enough of it.....when we were in CA in spite of seeing and doing things, I was able to read two books that I picked up in the airport. A Reliable Wife and The Piano Teacher.....both very good. I tried to read Eat,Pray, Love at one time and forget why I could not get into it, but I definitely want to see the movie. I love Julia Roberts and have liked just about every one she has ever been in....think she is beautiful and it's so nice to hear that she really loves her husband and is so happy in her off screen life. I never could figure out the Lyle Lovett marriage however. Julia is right....you are a success, SV. Look at all the things you have done in your life and still doing in spite of your terrible chemo experience. Ice cream seems to be a cure all for a lot of things so keep on eating. My main source of comfort food is starch.....mac and cheese, pasta with butter and pesto, any kind of potatoes, good bread (the kind from a bakery, not the packaged stuff) with unsalted butter on it, grilled cheese sandwiches......Ummm, I am making myself hungry. But I have not eaten most of that stuff for a long time. I have been doing WW forever and I mean forever....started it back in Jan when I went on the megace and of course it did not work very well since megace is supposed to make you gain weight. However, since I was doing WW, I did not gain the way I would have had I just been giving in to any sort of cravings I had.....so I only went up about 5 lbs. Don't diminish 5 measly pounds.....it's a lot when you are 5'2"....like a whole size. I stayed on WW after I went off the megace and started navelbine and the diet is finally working and starting to become a way of life and I find that when I go out I make sensible choices now without thinking about it....take a salad over a burger....get the broiled fish instead of the chicken fried steak (ummmm, I love that with the gravy on top!) So because of this I am getting back into clothes that I was unable to wear last summer. The sad thing is that in spite of losing weight some pretty strange things have happened to my body.....part of this is aging, but I know chemo and estrogen inhibitors had a lot to do with it......like I have this stomach with no muscle tone to it whatsoever. One thing I never had was a gut.....my excess weight has always been in my hips and legs. And I don't know if it is due to my back or the fact I had one knee replaced, but I am crooked. I know the physical therapist told me one leg was shorter and I do wear a little lift in my shoe for that, but my belly button is off center.....which is no big deal since I am not walking about with my midriff exposed, but it is very odd. Actually I have to stretch up and make myself stand up straight to even see it as it is now sort of buried in this flabby flesh I have. My mother used to always say, Stand up straight, put your shoulders back, but it is just so comfy to slouch. I know I must sound like the vainest person ever going on about weight and body shape like this, but I find it sort of facinating how our bodies change. When you are young you just sort of take everything for granted....your health, your energy, your nice firm skin and I know I certainly was never satisfied with what I had.....heck, I used to go on insane diets when I had no need whatsoever to diet......blame it on Twiggy.....and I baked my skin, used crisco and that mix of babyoil and iodine to fry myself. Used a reflector on my face and got sun poisoning on my forehead which swelled out like an egg. Aaaah, sweet youth. I find I really like my mind so much better now......I never would have wasted years on some of those Aholes I used to go out with, would have gotten to be friends with my mother much earlier in life than I did, would have tried harder in school. But it's easy to look back and in truth I would probably make the same mistakes all over again.
All of us is wonderful and accomplished in our own way. I have a neighbor who is an alcoholic, but she is a controlled alcoholic, manages to keep her job and functions. However she is so down on herself that I just want to shake her. She comes to my house looking for alcohol when she is feeling bad about herself and talks about all the things she doesn't have going for her....she is smart, witty, talented, but you can't tell her any of this as she has the worst case of low self-esteem ever.....and alcohol is a depressant in case she doesn't know it. I get down at times, but oddly enough it is not cancer that depresses me.......for some reason I just sort of accept that as part of my life. And in truth I feel it has made me a better person. I stilll worry about the petty stuff which is obvious when I am writing about body imperfections, but it is because I worry about this petty stuff, that I don't get too freaked out about the cancer. I still sweat the small stuff and in my case that works for me. I agree to do things I don't have time to do, am always starting new projects, don't allow myself enough time to just relax (in truth I can't stand being idle) and I work as many hours as they offer me (fill in for the other hygienist is she's got something to do), and I think this works for me because it keeps me too busy to fret too much about my cancer. Oh yes, I do get upset when I hear my tumor markers have gone up, but I get used to that in a few days. My point......I don't even know what it was. This board is like my therapist......I just babble on because I feel comfortable with you.
When I had my treatment on Wed. I asked two different nurses if Dr.Cody had seen my CA 27/29 and they said they didn't see any change in orders and just went ahead with my regular treatment. Then I called the next day and asked if I could schedule my scans and the scheduler wanted to know why and I said because my tumor markers had gone up and she wanted to know who had told me that. I said YOUR office told me that last week when I called for the results. She said normally if they go up, your onco will order scans and I said I know that and that is why I want to schedule them before I see him next Wed. See, I don't see him everytime....when I am doing well I just have treatment every other time and see no one. So I just asked her to run this by the dr and if it was Ok I would schedule my own. Ok she says, I will get back to you. What is the best # to reach you at. I gave her both cell and work and now it's the weekend and no one got back to me and I am going to have a talk with him about this. Ever since everything went to computers the office has changed.....it takes forever to get hooked up, they make me pay before I even go back, they can't just look as see what my last test results were because the paper chart is gone and they have to scroll and scroll on the computer screen....modern technology is not always improvement.
I have this dream that maybe we can all get together one day. I know it wouldn't be easy since we are stung out all over the place, but maybe we could pick a central location and start on a plan. I would volunteer to be the cook if we had a place with a kitchen and if not to at least bring food since that is my thing.....I love to cook and bake. Think about it.
Anyway, I have gone on long enough. Now I must drive 23 miles to feed my friend's cats and her turtle.....another case of me not being able to say no even though it is a PIA to do this.
I don't want to take the test for Alzhemers as I might be positive and don't need that. In the last two weeks I have lost my bank card and my car keys....have another set, but the set I lost was the one with the key pad and those are expensive to replace. These keys were on a stretchy red rubber coil attached to a stuffed gerbil key ring....in other words, not small. I have lost my bank card and other credit cards mutiple times, but never consider it lost since they always turn up, but this time it's been about a week so I canceled it yesterday. I forgot to make a payment on my 0 % credit card and am just hoping it doesn't go up to 24.99% because this is the card I put replacement windows on. Being so disorganized keeps life from being boring.
Hope you are having a good weekend with family GD and able to not think too much about the Big C. I really want to watch that show The Big C with Laura Linney( Linley?) and that girl who was in Precious, but I don't get Showtime. It looks like it would be good. There have been a few shows where characters have had cancer and I just want to scream because the way they protray them and have them react is so unrealistic.
Think about a get together......I know many women on these boards have done it. Marybe
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Hi, Everybody,
GD - so glad you have a doc you can feel good about. I have a super onc..... so far. Only time will tell whether the love affair will continue.
SInce I'm doing neoadjuvant TX I haven't yet had surgery and feel a bit out of it where those conversations are going.... not sure what I'm looking forward to since we don't know what size the mass will be or the number of affected nodes.
Still, just not thinking much about it. Accepting whatever healing energy the Universe wants to send my way and enjoying what I do have. Tonight Ken is taking me to BLossom Music Center in Cleveland to hear Yo Yo Ma's Silk Road Ensemble.... will be our third night on a blanket under the stars as we've tried to catch the Perseid Meteor shower the past two nights.
My hair began to fall out around 3:00 on Friday and we're simply harvesting it as it comes.... well, occasionally we "harvest" a bit to help it along. Don't know what I'll do with the hair... a friend tells me it will keep the deer out of my garden... but, we'll see. I'm a hoarder, but I've never tried it with my own hair!
Does anyone here have a Power Port? And does it still hurt or is uncomfortable weeks after being installed? I'm having a lot of discomfort with mine. I'm wondering whether the doc screwed up the implant more than he admitted to.
Well: off to the wilds of Ohio. Have a great weekend ladies!
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I have never had any problems with my port and it has been used so much that I don't even feel it when they stick me. My friend who has only had hers for about 5 months now has a lot of discomfort with hers and just WANTS IT OUT. She has been having problems with swelling in her arm which I think it lymphedema, but at the same time do not know how this can be since for some reason they did not take out any nodes when they removed her tumor.....also she had a blood clot in that arm and she thinks it is all related to her port since this happened after they had trouble accessing it. All I know is that they make treatment a lot easier and as time goes by they must get calloused or just toughen up because as I said I don't even need the numbing cream or spray to access mine.
Have fun at your concert.
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Maryby...you really made me laugh about your mixed up body.ate we related? and vanity?? shit that was my middle name.but that changed once i got bc.all that doesnt matter any more except the hair..im not up to that yet but im stressin already.
and a reunion...great...from all over the world to see our sistas...im in
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