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Can we have a forum for "older" people with bc?

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  • amE2
    amE2 Member Posts: 90
    edited April 2009

    HI,

    OK, I guess this is what this discussion board is for.  I am having a bad day.  Emotionally.  I have been very up and positive since I was DX's. I was looking forward, keeping my attitude positive.  I was thinking, we are moving into a new rental and it has a wonderful place to meditate, it's bright and sunny and I had so much hope for my future even though my cancer is advanced.  I have looked into Patrick Quillins book and believe it will really help.  I am starting to work on my sugar intake. I believe in the Arimidex I am on and the possiblity of Herceptin in the futrue. I am not going to live forever but it brought me hope. Maybe a couple of years, even one would be good. It is enough that they are going to do a brain scan on me next week to find out if it has gone to my brain.  I have been woking on getting my BS in Psychology for many years and am almost done.  If they find something wrong in my brain will I have to give it up? 

    My husband has not been keeping track of the money given to the doctors therefore the money for the new house is not there. It is a usual with him.  Not there when I need him to be.  It's always suppose to be me that picks up the slack and keeps track and right now I just can't do it. What is the matter with him?  Sigh, This all has managed to drain all hope out of me.  I don't see any future and I can't do anything but cry.  I wish it would be either hope on no hope.  It's this schizophrenic up and down that gets to me.  I can live with dying.  I just can't live with what is between now and then.  Does that make sense to anyone?

    Sorry, I wish I could be up and happy, I just can't get to that point today.

    Thanks for listening to me.

    PamW1

  • amE2
    amE2 Member Posts: 90
    edited April 2009

    Thank you so much Jo,

    I needed a quick reply.  I was so down.  By mets you mean metatastic?  Has it spread? Yes, to my lungs, a couple of tumors, he said.  He reminded me that I have the best kind of BC to get as far as treatment goes.  I don't have the kind that doesn't respond well to treatment in my liver, lungs or pancrease or kidneys.  I have had a CT scan and he could see that much.  They haven't done a brain scan though, so thanks for your comment about brian scans as I didn't really realize how much it was freaking me out.  

     They are testing for HER/2 neu right now.  I will be put on Herceptin if they can do it, I have high blood pressure and heart probs also.  Although I am overwieght it isn't that much but HBP runs in my family genetically.  Everyone has it, my dad had it bad but lived to be 86 (like your dad and yes I have been reading your posts, all prayers accepted :-)  The thing is no surgery unless they can get some of the tumors to reduce some and then I will have to go up to Moffet in Tampa as they can't do the extensive surgery here in Sunny Southwest Florida.  Another women here was going through the same thing (don't remember which one) so she made me feel better about that anyway.

    I have ER+ and PR+ they said I was a great candidate for Arimidex.  It's just that I had no health insurance for so long that it is a bit involved now (to say the least)  Every doc I talk to is raging angry as I was always a good caretaker of my own body.  Mamo's, Pap Smears -- the whole nine yards but when the health ins went I had no choices.  I spent time looking and found nothing.  There is more to the story but suffice it to say that all my docs are telling me to look forward now and not think about what coulda shoulda been.  So that is what I am trying to do.

    Again, your comments helped.  I am finding these forums essential to my recovery.

    Thanks again,

    Pam

  • illinoislady
    illinoislady Member Posts: 38,258
    edited April 2009

    Pam I don't know that anything I have to offer will be of help to you.  I have only had cancer  since Sept 2007 and I have not learned all that much.  I do believe that Y-Me and other organizations dealing directly with cancer often will pick up the cost of much of your treatments.  I think Susan G. Komen is another possible resource.....I say this having little idea.......I faced the loss of Ins. as well which I was not told about until I tried to  make an appt, with my regular PCP......and eventually remembered that I had been in the service and might be able to use that as a resource which did in fact end up being the case.

    As far as husbands now....dare I say this, but mine sounds much like yours.  I sort of gave up a while back.....and just make sure to save for the things I know I'm really going to want.  Sometimes there seems no rhyme and reason for the odd devil-may-care attitude and I so have envied ( my parents actually did this too ) married people who sit down, decide on their goals and continue to work on them until they are reached.  I can't begin to tell you the envy-----but at the same time....while I do consider this a fairly big flaw, I also have to remember the love and devotion he so often displays and the fact that he is happy most of the time to let me be in charge of a large part of our life....but yes, I will always feel a lack because we are so far apart on money.....he seems to think somehow if we need it, it will magically be there.    Funny, I thought those times had come to us several times already but no money came with them. 

    I have said it before and I think it is a good time to repeat ...... women are it seems more capable most of the time of intense worrying and getting the blues.  We hold everything together...even when we have to work too, and strive to keep the whole family balanced and happy, doing well and achieving....and not having to let much for stress creep in.  Maybe, too...I sure have found myself doing it, you rationalize negative feelings  thinking it is just because your tired or had lots of extra work etc.  We are so used to our role of 'make it better' that we even trap ourselves into finding reasons why it will get better for us.....but it does not always do that. 

    If I have any decent advice I guess I would say....allow yourself a day to be down and mourn circumstances.  More if that is what you need.   Not accepting that it is a part of who you are and what you really feel will delay the mending cycle.  I have to learn ( not easy lots of times ) to accept things as they really are.....because the truth does set you free, and once you call it completely your own, from top to bottom, inside and out, often it ceases most of it's power to upset and knock you off track.  On past that the inspiration often comes as to how to repair what is not working and if not repair at least how to live with it in some kind of decent harmony.

    I do wish you well Pam and this is a large part of why we are here and keep coming back.  I hope you can find some resources that might help. 

    Prayers and hugs,

    Jackie

  • Gramof3
    Gramof3 Member Posts: 111
    edited April 2009

    Pam,

    I wish I had some great nuggets of wisdom to pass on to you--but I really don't.  All I can say is that when you do have the down days, let us know--we are pretty good at helping hold each other up when the way gets bumpy.  You'll have opportunities to "give back" when your're up and someone else is down!  We care about you and what you are going through, including the DX, spouses, insurance, the "coulda, woulda, shoulda" -- We all need each other to keep going and climb on top of this, so post anytime.  Prayers and hug are headed your way

    (((prayers, hugs))).  Helen  

     JO:  Just heard from Diana--not good.  Mx is scheduled for next week.  Prayers, please.  Thanks. Helen

  • amE2
    amE2 Member Posts: 90
    edited April 2009

    Hi Jackie and Helen,

    I have found that once I post my problem here I await avidly for a reply.  It does make me feel much better to know there are others that understand my crazieness.  Jackie, I didn't explain myself very well.  I didn't have health insurance for several years, in those years I found this lump.  But it was growing while I was deciding.  My docs are strict about my being around people that want to blame and shame me.  I have re-married my X-husband so now I have insurance and it is taking care of me.   It was not an easy decision but had to be made.  People get angry at me cause  they can't understand why I didn't remarry him sooner.  He is Jewish, I am Catholic. We joined a nondenominational church.   It didn't matter to him the decisions I was making.  I have enough residual Catholic in me that it did matter to me. I didn't divorce him lightly and was not about to remarry him lightly.  This caused a lot of problems with some of my judgemental friends.  I have gotten more support here from you all then I have gotten from them.  Oh Well, I still am not feeling that well, some days up some days down I guess.  But I think I will call the doctor tomorrow to see if he can do something about my constant coughing.  It is keeping me up at night, so I am not sleeping well at all.

    LOL, maybe I shouldn't say that as I am one of those that started taking the Arimidex in the morning and WAS sleeping well at night.  Oh well, this too shall pass.  It may be because I pass but at least it will pass.  LOL  Sorry about the gallows humor, it's one of the quirky things that gets my through.  

    BTW Susan Kohmen only helps dispense information, they made that VERY clear on their web site much to my chagrin.  That same idea goes for most of the cancer sites.  They all make money, they don't dispense any.  Sigh.

     Thanks you again for all the responses.  It's odd but I do feel like someone cares.  It's you all you!!!  It's really very nice.

    Thanks again and hugs to you all.

    Pam W

  • Maire67
    Maire67 Member Posts: 418
    edited July 2010

    Hi Pam,

    Sorry you are feeling so down and with good reason.  Having friends judge you for anything you do is hard.   I can understand that Catholic thing too ...I miss the Church but I don't get there very often..usually during the week ...not so much Sundays....for a lot of reasons but I do believe that God is not judging any of us. All He asks is that we follow the golden rule.   This trip through     bc land is giving me new insight into that rule.  

    It makes me angry that medicine and insurance take up so much of our energy.  I don't understand the food chain involved in all these pink organizations.   But walk for the cure events seems kind of nuts when there are people who can be helped ...saved by medication and they can't afford them.   Sorry I guess I"m venting here too.  I'm one of the lucky ones...but hate to see other's struggle so much.

    I remember caretaking for my mother..it was a hard to watch...we had a good relationship until she was in her late 80s and didn't understand that work and family didn't leave as much time for her.  Looking back I can now see ..part of it was my guilt for not being there enough...she was angry because she was getting old and was becoming dependent.   

    When I was going through chemo....I thought about her a lot....realizing some of what she must have felt.

      I'm only learning at 60 that you can't be responsible for making everyone happy all the time.  

    I was watching Dr. Snyderman on PBS tonight and she said that we should try to notice one really good moment or thing every day....she had a good little phrase for it but I've already forgotten that.  So today I listened to my son laugh during a phone call...he sounded truly happy. That's my moment for today.

    Prayers, hugs and smiles to all

    Maire.

  • mzmiller99
    mzmiller99 Member Posts: 220
    edited April 2009

    Maire - What a good thing to keep close at hand...one good thing every day.  I get so swept away in the bad things, that I forget to look for the good things that do happen.

    Thanks for the nugget of wisdom that I will try hard to remember.

    Hugs to all.  The weekend is almost here!  YAY!!

    Susan

  • GramE
    GramE Member Posts: 2,234
    edited April 2009

    Anyone want a break from cleaning?   Try this site:   

    http://www.hulu.com/

    You can call it exercising your mind...    HUGS,   Nancy 

  • kmccraw423
    kmccraw423 Member Posts: 885
    edited April 2009

    JACKIE - you are so wise and compassionate.  I think your posts are empathetic, understanding and good old fashion horse sense!

    JO - you, too, are such a warm and compassionate sister.  I love to read your posts - and if you don't have red hair like your avatar I would be surprised.

    PAM - the biggest lesson I have learned is "It is what it is."  It is when we try to change what we can't that we are most unhappiest.  I hope you feel better soon.

    Love and hugs to all my sisters.

  • Deb-from-Ohio
    Deb-from-Ohio Member Posts: 102
    edited April 2009

    Good Morning Ladies

      Have a quick question for you...going to be getting a lumpectomy soon and possible node removal, now I've heard that you're never supposed to have your blood pressure checked on the side of surgery.  What if you're not able to tell them not to? Is there some sort of bracelet we should get warning them or what? Just been going through my mind lately...anyone know?

    Hugs

    Deb

  • illinoislady
    illinoislady Member Posts: 38,258
    edited April 2009

    Deb,

    You definitely should not be having anything done on that arm....no blood pressure, no blood drawn...no nothing.  Lymphedema is a real risk....and no way to tell when it might appear if it does....but letting anyone use that arm for these things things would be high risk behavior.

    There is a bracelet you can get and as well if you can't find that in time...you can always have one of the nurses write in magic marker on your arm. 

    Assuming you are having Sentinel Node Biopsy....that sometimes I think keeps from having to take too many.

    Jackie

    p.s.

    hard to believe how many people will ignore this 'rule' and I thought I was going to have up get up and run from one very insistent technician. 

  • Gramof3
    Gramof3 Member Posts: 111
    edited April 2009

    Has anyone heard from Makita?  (Maybe I missed a post??  chemo fog).  Helen

  • Deb-from-Ohio
    Deb-from-Ohio Member Posts: 102
    edited April 2009

    Jo you're gonna shoot me...LOL I read your first line and seen where it said you had to be put to sleep and I'm thinking well how is she typing? DUH!!!!!!!!!!!!!!!!!!!!!!!! I know now the chemo destroyed my last brain cell.

    Yup it's April 6th, this coming Monday.  Thank you all for that information! No one has ever told me all of that before. And where is it that you get these bracelets, anywhere they sell them and engrave them? Anyone know of a cheap place?

    One more question and I will stop asking...I had the 4 every other week A/C and then the 12 weekly Taxol. My last one was last Tuesday. How long will it take before I have some energy? I am still so tired, run down and sleepy, still taking a daily nap...I'm a wasting daylight! :)

    Luv, Hugs and Prayers

    Deb

  • illinoislady
    illinoislady Member Posts: 38,258
    edited April 2009

    Hi all....first thank you Kathleen.  I was in the middle of apologizing to everyone for being a big blabber-mouth because I got some things a bit backward with Pam  ( who didn't mind and took the blame for it herself ).  Sometimes I get carried away....wanting to help and sometimes just say more than is needed.....so thank you Kathleen....Pam and everyone.  You are all good sports to put up with me.

    Jo, I think in one of her earlier posts Makita did sound as though she would be in hospital a bit longer than so many are.  I seem to remember some surprise......seems like now-days they ship you out so quick...seems insurances will only allow bare minimums now and if you stay longer need a good reason.  I do hope all is well and like you wish someone would have thought to ask if someone close could update us. 

    Deb, I will do a little checking about those bracelets.  I lurk on another bc blog and one of the ladies there was talking about some.  I'll see if I can find out more from her.  Also another thing to remember is.....your susceptibility to lymphedema is basically for life.  The less lymph nodes needing to be taken the better.  That is the reason for Sentinel Node Surgery.....dye is injected before surgery....right near the operative sight.......that dye goes to the node ( first in line to drain that area or that breast ) and will pin-point to the surgeon the nodes that are or would be the first to receive any cancer cells.    They take those first and they have Dr's in the lab who will perform tests immediately.....and good Dr.s can tell if any evidence exists.  If those nodes are clean and clear....no other nodes are removed.  If something is there they take more.....until they find nodes with no evidence of cancer cells.   I had three nodes light up as Sentinels.....so they all went to the lab while I was still under....came back fine so all the rest of my nodes stayed with me. 

    Another thing they may forget to tell you.....sometimes when they inject the dye...some might remain in the lumpectomy breast......for upwards of a year.  It's nothing to be alarmed about.  Also for anyone who will be waiting for you in recovery.....you ( your face ) will be a little blue too however, that will dissipate fairly quick after you are pretty much awake so not to worry.  It is just a little surprise for the person who is there for you. 

    Probably told you more than you ever wanted to know, but I had a fantastic surgeon and medical team that covered all these bases well beforehand so no one freaked out. 

    See ya'll later.    

    Jackie

  • Rainenz
    Rainenz Member Posts: 21
    edited April 2009

    Hi Ladies

    I found this thread nearly a week ago and decided I would read all the post before writing one myself, boy thought I would never get to the end as you all post so profusly.

    So can I join this group wouldn't qualify with my 1st dx was only 42, but had a 2nd dx at 51 and am nearly 3 years out from that one.  Both my BC's have been Triple Negative, with node involvement, had a lumpectomy, chemo and rads 1st time.  Went for another Lumpectomy 2nd time around, with SNB (ended up being Aux Clearance as nodes were positive) then had to go back for a mastecomy as they found DCIS as well as IDC and no clear margins.  Now waitng to see PS about reconstruction. 

  • Gramof3
    Gramof3 Member Posts: 111
    edited April 2009

    Rainenz,  Welcome!  We've never actually defined "older" and I imagine each of us has a little different idea as to what older means!  We do think of ourselves as "seasoned," and, as AussieSheila calls us, "Chooks."   So hop on board with us--we're all on this wild ride together. 

    BTW, my high school class (eons ago) included a Foreign Exchange student from Duneden (sp?) and we still hear from her occasionally.  Helen

  • illinoislady
    illinoislady Member Posts: 38,258
    edited April 2009

    Ok Ladies....hope this is of major help to all. 

    Jackie, et al.  I mailed bracelets yesterday, but still have a few dozen.  They are free, from Peninsula Medical, Inc.  You can order them from www.lymphedema.com.

    For those who receive the bracelets, please show them to Drs. RN's, EMTs. and surgeons.  They don't do much good if the people who might see them don't recognize them..especially nurses and anesthesiologists.  I keep one in my purse, in case of accident.  That's where EMTs and police look.  I only wear one if I'm going under.

    Patti Day

  • GramE
    GramE Member Posts: 2,234
    edited April 2009
    FREE BRACELETS for Lymphedma alert:   www.lymphedema.com
     
    1-800-29-EDEMA
     
    They are pink plastic, reusable and were sent to me very quickly.    
  • illinoislady
    illinoislady Member Posts: 38,258
    edited April 2009

    Rainenz...welcome to our little corner of this cancer blog.  As Gram said...we haven't really made any rules pertaining to any certain age....just sort of loosely defined I think as somewhat menopausal, fairly seasoned etc.  If you are comfy with us....I'm sure to a person we will feel just the same about you.  Welcome. 

    As an after-thought to my earlier posting re: the lymphedema bracelets....I think Patty just sort of ordered quite a few and she would give them out to the other blog members who contacted her.  As well, from the sound of her note....you could just request one for yourself.  The nice part is that they are free --- anyway, just go to the sight she has highlighted and we can find out there.  See you all later.

    Hugs,

    Jackie

  • GramE
    GramE Member Posts: 2,234
    edited April 2009

    Another caution for the arm on the surgery side:   no heavy lifting.  Heavy means nothing over 5 pounds for a month after surgery.  AND, good idea NOT to put a purse on that shoulder.   There is at least one thread discussing lymphadema.   It is not curable but it is controllable.  

  • AussieSheila
    AussieSheila Member Posts: 439
    edited April 2009

    Here Chook-chook-chook! G'day ladies, I would say girls but, at our ages, we deal in reality here, don't we?

    I thought I would tell you all about my bone scan a couple of months ago, whilst hoping I'm not repeating myself on a previous post. Please forgive me in advance, I can't remember if I posted this on this site or another.

    Ok, so, I'm in the scan room at a private hospital, and the two techs/nurses? can't get a vein in my good left arm to put the radioactive contrast through. Both women have tried twice, which is their allowable limit, and I have dressings everywhere.  They decide to call a Dr and I, feeling quite jittery by now, am lying on the scan plank, quietly waiting, when I hear this loud male voice from somewhere behind me, saying, "You know, this stuff about not having BP and bloods drawn after mastectomy is a fallacy.  There is no reason for not allowing medical treatment if you have no nodes, it doesn't cause Lymphodema and the research has proven this . . . .blah . . . blah . . blah. . " He continued, while standing over me shaking his finger and shouting at me, until he finished his lecture and stalked out, without even trying to find a vein for the procedure to start. 

    The two nurses were red-faced and shuffled off somewhere behind me for a few minutes, while I lay there thinking that science had changed in 13 yrs and I was now free of this stress.   Then they came back with the tourniquet and needles to put into my bad right arm; which had very accessable veins. When it was all done and I was preparing to leave, I was on the verge of tears and would have probably broken down, until I entered the waiting room, where my DH took one look and said, "Wow, what did they do, use you for a dart board?"  He diverted my shock by making me laugh and I survived the event. 

    Later, I asked my Onc what the current research said on this and she said that there was no real proof of any LE consequences after meds treatments but it was up to me whether I allowed these to be done.

    I feel that most nurses don't have much experience these days with giving injections et al, and should have to do a day or two each year in a Pathology lab to keep their skills up to scratch, or maybe learn how to do it properly in the first place.  The path lab nurses I have met, can get in and out of your veins before you can say 'ouch.'  My D.i.Law to be, has been a practicing nurse for just over a year in a short-staffed mental health unit and asked her superior to be allowed to put some time in on the wards to update her practical skills and was refused. Now, her boss is in danger of losing her, permanently, to a more 'hands on' section of the hospital.

    Sheila.

  • binney4
    binney4 Member Posts: 1,466
    edited April 2009

    Man, it's hard keeping up with this very busy thread! Tongue out Panting hard and trying to catch up!

    The neon-pink lymphedema bracelets are a good start, but not enough for surgery, since nobody seems to notice them or understand what they're about. So, do use them for surgery if you have them, but also take a few other precautions, like these:

    1.) Write on your arm with a permanent marker (comes off later with alcohol). Get somebody else to do it -- it's really hard to do this on yourself. Write "No BP here!" on your upper arm, and "No IV this arm!" on the inside of your arm near the elbow and on the back of your hand, and write "Restricted Extremity" down your arm in large letters. If your surgeon is a good guy, have him sign your arm as a further endorsement of the messages you've written there.

    2.) Make sure that your surgeon has written not to use that arm in his surgery orders. Not that anyone will read them of course, but if you get into a tiff with somebody who wants to use that arm for their nefarious purposes, you can tell them to check the written orders.

    3.) When you sign the surgery release, write in "L arm, restricted extremity" somewhere above your signature if it's your left arm, and "R arm restricted extremity" if it's your right.

    4.) TALK TO EVERYBODY!! When you check in, tell them that arm can't be used for anything. Once you're in the prep area, tell absolutely everyone you see. Tell them nicely, smile when you say it, but DO say it. Make sure you speak to the anesthesiologist beforehand and tell him too. Ask them to allow you to speak to someone from the recovery area (they may not do that, but it's always worth a try), because recovery is the place we "swell" gals have the most trouble (one gal went into surgery with her arm wrapped in layered lymphedema bandages and woke up in recovery with all the bandages in a bag and the bp cuff on her arm!Undecided)

    5.) If you'll be staying overnight, have someone who loves you assigned to make sure they put a sign over your bed about that arm. A word of warning, though: phlebotomists who creep around at night doing blood draws sometimes don't see the signs, so there too it's important to have the information written on your arm.

    6.) If you're up for it, make a few copies of the Risk Reduction Position Paper from the National Lymphedema Network website and take them with you to hand out as in-service education. That may not help you much, but it'll make it easier for the next bc Sister who comes along. They're here: http://www.lymphnet.org

    As for the regular jemelry-type medical alert bracelets, the American Cancer Society's TLC online catalog sells them. They don't say "lymphedema" on them, they just say no BP, IV etc., because medical personnel often ignore it if they know it's "only" lymphedema. They're more likely to pay attention if they don't know the reason for the restriction. (Is that sad, or what?!) A variety of other alert bracelets are listed at the bottom of this web page:

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    Some are pricey. If you're going for "pretty" remember that in an emergency, if it doesn't look like medical alert jewelry the EMTs might not notice it. If you've had bilateral surgeries, both arms are at risk, so consider a medical alert necklace instead.

    Whew! More than you wanted to know! Sorry, but I get carried away on this subject because the vast ignorance about LE among medical personnel makes medical settings the greatest risk we have for triggering it. <Sigh!>

    In case you'd like to wise-up your doctors about lymphedema and lymphedema riskKiss, here's a page we put together to copy and give to them (there's a printer-friendly version available there too):
    http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm

    Looking forward with you to smooth sailing, Deb!
    Be well,
    Binney

  • binney4
    binney4 Member Posts: 1,466
    edited April 2009
    Sheila, we were posting at the same time. I'm really sorry about your experience. The reason they say there's no evidence is because funding for lymphedema research is very hard to get, so no study has been done. Next time, tell them you want to see the studies that show it's not a problem: there are NONE of those either. So all the evidence either way is clinical (anecdotal), but all of it shows these things will trigger lymphedema. A blood pressure cuff triggered lymphdema in my left arm, unprotected air travel triggered it in my right arm. One node removed on the left, prophylactic on the right. Hang tough!
    Binney
  • Rainenz
    Rainenz Member Posts: 21
    edited April 2009

    Hi

    And thanks for the welcome.

    I do have problems with medical people and my arms (both at risk), but had a really good experience  recently when I went for some Gynae surgery had the bracelets on and the main anaethesist was aware of what they were for and happily put canula in my foot.She told me she had a new person working with her and would I mind not saying anything at first to see what he would do.  He came in with the BP cuff commented "did I have bad veins as I had canula in my foot" and proceeded to head to my LE arm with said cuff.  Was then pulled up by boss and asked if he had seen the pink band and know what it was for. His answer was no to both q's, We then made him read the warning on it BP cuff was then applied to leg.

    I have found the staff in the scanning dept's hardest to  educate, that I don't wish to risk getting LE.

  • GramE
    GramE Member Posts: 2,234
    edited April 2009

    Besides using magic marker on your arm, you can take a sock, cut off the toes and write in magic marker.  This is more noticable than marks on ones arm, MY experience.   

    I have to tell what happened yesterday when i went for MUGA scan.   I had my Herceptin treatment, they left the port connectors in and I proceeded to nuclear medicine to get blood drawn for the dye.  2 nurses and one supervisor could not get any blood from my port.  I was getting dizzy from it all and finally agreed to have it drawn from my (good) arm.  One pinch, zip, zap, done.   The reinjected it thru the port.  When I went back up to get the port "closed", I told them they could not get any blood and no one could understand why not.  

    AND, when I had the lumpectomy, the anesthesiologist did not want to use the port because she said not many have them.  Fortunately the surgeon was standing right there and told her to get a move on and use the port.   

    My worry is that I already have major nerve damage on my left arm due to multiple reconstructive surgeries from a car wreck (not my fault).   2 bones and one nerve were removed from my wrist and I have 30% of normal use of my hand.   NO ONE is going to tell me they are going to use that arm for anything.   BTW,by the way,  I do not have lymphema ... yet.   

    Stand up, speak out, do NOT let them bully you.  I also printed out some stickers - return address labels you can get at Staples or office supply store.   I stick them on any and all forms, and on the front of my "folder".   Besides the LE risk, I have multiple allergies, even to the scrub soap.  Another sticker lists them.    You can  call me a BI**H or whatever, but you WILL NOT use that arm...

  • Jo_Ann_K
    Jo_Ann_K Member Posts: 26
    edited April 2009

    Lefty,

    You are absolutely right to do that. When I started my career in nursing (1000 years ago..haha), we always made signs not to take BP or blood draws from affected limbs. Today, if you're not your own advocate, no one else is.

    Regards,

    Jo Ann

  • binney4
    binney4 Member Posts: 1,466
    edited April 2009

    Hee-hee, Nancy! I love the sticker idea! Laughing Plaster everything!

    I gotta do that...Cool
    Binney

  • illinoislady
    illinoislady Member Posts: 38,258
    edited April 2009

    Binney---bless your heart and soul.  Lots of materials and things to read which we all need.  I admit it...with only three nodes gone I am probably not as apprehensive about lymphedema as others --  though that in no way frees me of the responsibility of using just as much caution and care.  Glad to see resources to look into and I very much think you & others are right on---plaster it everywhere --  no one gets the chance to say they 'didn't know'. 

    I'll be back after work.  Tired today....I think the chemo destroyed my immunities to all the Spring allergens.  Started on Clariten but I'm still rocky for 3 days of nose blowing, clearing throat constantly and itchy moist eyes.  I waited to make sure and sure enough.  Later then.

    Jackie

  • illinoislady
    illinoislady Member Posts: 38,258
    edited April 2009

    Forgot to say hi to you Aussie Sheila. That is quite  a story about the Dr. bawling YOU the PATIENT out.  I'm amazed !!!!!   And the rantings about the lymphedema.....I don't usually say it that way but I'm thinking.....what bee crawled up his you know where.  I have a real problem with ADULTS throwing near tantrums which is what this  sounded like....now hope I didn't read that all wrong. 

    I'm off for the night.  I need my pj's and my recliner.  Bushed from the allergens of the day.  Talk to ya'll in the morning.

    Hugs,

    Jackie

  • Maire67
    Maire67 Member Posts: 418
    edited July 2010

    Aussie Sheila...I had  a nightmare with the oncall doc and after 12 sticks I called my gp from my hospital bed....suddenly I had an anestesiologist from labor and delivery..he got it on the first try.

    My suggestion for blood draws is to get them to use a pediatric needle...and also to request a peds nurse if you can find one.   Binney knows best on this lymphedema stuff.  

    My last procedure the nurse tried three different times even with a hospital issued pink bracelet on my arm....I like the sock...and the magic marker...and maybe put I-800-Lawyer on your arm.(a commercial here in the Northeast) 

    Jackie...allergies are hitting here too....rain today was a blessing.

    Rainenez...welcome...

    Smiles to all.Maire