Rough day....just rambling...

kimber3006
kimber3006 Member Posts: 586
edited June 2014 in Stage III Breast Cancer

I'm officially half way through what is hopefully my last round of chemo I'll ever need - just did #6 of 12 Taxol today.  I should be feeling a little like celebrating, but mostly I'm just really, really tired.  I even came home from treatment and slept for almost 3 hours and still feel wiped out.  Plus my upper arm is swollen. Come on, even before rads?!  I  so do not want to add more doctors/PT into an already packed schedule.  We did a little yard work yesterday and I helped DH with cutting up a a big limb he had pruned.  I was trying to be careful - wore gloves and just did the smaller pieces as the larger parts were requiring too much strain, but I guess it was still too much.  I'm so frustrated with these new limitations!

BTW, lousy new nurse (actually I think she's some kind of a nurses's assistant?) was there again today.  As my nurse was busy with another patient when my benedryl was done and the machine was beeping, she came over to switch it for her.  She's been there for at least 3 weeks, maybe a month now.  I've seen the nurses walk her through the IV thing several times.  It's written in bold black marker which bag to use next when one runs out.  So she disconnects the benedryl and starts my post chemo flush, ignoring the other pre-chemo med, and says "Uh-oh, I think I did this wrong".  Every head in that room snapped around to look at her.  I said, "That is really not something one wants to hear from a medical practitioner!"  Everyone (patients) kind of laughed.  Seriously though, I don't want her near me again.

So I'm trying to keep my arm elevated and hoping I sleep tonight.  A smaller arm and waking from a good night's sleep in the morning would go far toward making tomorrow a better day!  Head down, trudging on.......thanks for listening.....

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  • Kandy
    Kandy Member Posts: 1,461
    edited March 2010

    Sorry you had such a hard day, I hope tomorrow will be better for you. I am in the medical profession and just wanted to let you know that you have the right to ask for the new nurse not have any part of your care from now on. We have had patients to do this and I have done it with my own care. They usually are very quick to accomodate your wishes, hope this helps you

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  • septembersong
    septembersong Member Posts: 287
    edited March 2010

    Well, you have every right to ramble. And every right to have a conversation with your infusion nurse (and if necessary your doctor) about that incompetent nursing assistant. You are absolutely right to not want her near you again. Please make yourself heard on this one!

    It's so hard, when you're in the middle of treatment, to accept these limitations. But as someone who's now seeing the light at the end of the tunnel, I can assure you that you will recover your strength, your sense of self, and your place in the world. You just need to finish this debilitating treatment, recuperate, and recover. It can take some time. But you WILL be yourself again!

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  • weesa
    weesa Member Posts: 707
    edited March 2010

    kimber--you know what? Your life is going to get a whole lot better soon. I am positive... When it happens, pm me and I will say, "Toldya so..." Towards the end of taxotere I was so weak I had trouble holding my head up--it felt like a 50 pound bowling ball, and I could not walk out to the mailbox and back. A wonderful nurse, sensing my discouragement one night when I was hospitalized for a severe nosebleed came in around 3 am and told me, " Weesa,your life is going to get a whole lot better soon." Then she turned around and left the room. She was so definite sounding, that I always remember her quick statement.. And, of course, she was right, it did get a whole lot better...for an awfully long time. So now I am passing her message on to you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Kimber,  Sorry you're not feeling great.  Give into it.  I so know how you feel.  I've been feeling lousy too and I'm done with chemo.  Wish I could tell you it will get better, but I haven't gone long enough out from treatment to tell you that.

    image

    Barb

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  • kimber3006
    kimber3006 Member Posts: 586
    edited March 2010

    Thanks, all!  I will mention it to my RNs whenever I go in for treatment, that I don't want her assistance.  I don't think I'd be able to sleep, otherwise (which I often do once the combination of benedryl and herceptin hit me).  Thankfully I don't get the blues often - the lymphedema thing just really gets me down.  I'm young, active (apparently too active!) and have none of the risk factors associated with LE, other than the total node removal, of course!  I want to be able to pick up my son again without worrying I'm going to pay for it!  I just need to remember that there may be help by next year.  I'm scheduling a consult with a PS (who also happens to do lymph node transfers) for May.  I actually read about her on this site and was thrilled to find out that I live in one of the 4 citites where she practices (though my husband and I were both totally open to travelling to New Orleans, if we had to!).

    Weesa - I keep a journal of positive thoughts.  I started it right after my mx when I was still trying to adjust all of this and it gave me hope in the early days when the tears started every afternoon.  That ended months ago (thank you, God!) but I still look at it when I get the occasional tx blues.  I'm adding your quote.  :)

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2010

    I had one nurse during Chemo who I really, really didn't like. My Onc told me if I got her again just to ask for another one! It is Ok to do that.

    Just hang in there. It is so consuming at this point. As Weesa said - Life will get so so much better for you very soon. Really!

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  • Pure
    Pure Member Posts: 1,796
    edited March 2010

    Hang in there-you can do this!!! Your almost done and in 6 weeks from now this will be over.

    How is your blood work? I got a little anemic and they put me on Iron Pills and I feel better. Also, would they consider lowering the decatron? I swear that stuff is evil. I am officially off it now and I feel so much better.

    Tell your doctor how you feel you never know what they can do for you!

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  • somanywomen
    somanywomen Member Posts: 872
    edited March 2010

    Kimber, You know how we have always been told to trust our gut, well now it's more important than ever...You had that gut feeling just like I did when this happened to me.....I finished rads in Jan..Usually the same two techs were there, but one day a new tech showed up and they were training her, she seemed a little clumsy... I thought "I hope she does not treat me!"..Sure enough, the next day, my regular tech was leaving for lunch, leaving new tech to treat me, when I objected and questioned her experience, they assured me that she had been doing rads for years and knew what she were doing....Well, I knew how my rads and the alignment of the machine because of previous ones...The first zap was not done right!..Then the next was not done right! so I yelled to get me out of there! that she did not know my treatment, I almost jumped off the rad bed, not realizing it was about 4' off the ground....I was livid, and when she and my regular tech (he had heard me yell) came in the room, I demanded to see my rad doc....My doc, her assitant, and one of my regular techs took me to a back room where they tried to assure me for about 30 minutes that no harm was done!!..She (the new tech) was never allowed around me again...I had asked my rad doc to notate this incident in my med records she said she would, and have tried to get copies for the last 2 months (she says she will mail them fo me) I won't give up until I have copy of what she did vs what she should have done.....I guess what my point is, is that sometimes we have to stick to our gut, trouble is I trusted my gut and was totally assured be the other techs that the incompetent tech was competent and this still happened, just like you, you had that gut feeling it seems even before she messed up your IV......We are so vulnerable trying to fight this bc, I wish I had more confidence in the medical profession...I learn more on this website than from any of my docs!!

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  • janincanada
    janincanada Member Posts: 258
    edited March 2010

    Hang in there Kimber.  It does get better.  I remember the same frustrations with the limitations and energy level.  I found that I was very drowsy during treatment and usually slept through the process.  Then I would go home and have a nap.  If I tried to push through the day I was fatigues for a couple of days after....so I napped.  I neve had an experience like yours with chemo, but |I agree with the advice that you have been given.  Be your own advocate and do what you need to do to be as stressfree as possible.

    I still hate having to wear gloves and be careful gardening.  I've never done that before.

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  • Octobergirl
    Octobergirl Member Posts: 334
    edited March 2010

    Thinking of you and sending support. We've been there and know that fatigue is unlike any other. Weesa's right...it gets a whole lot better.  Chemo was the hardest part of all my treatment.

    Be kind to yourself.

    Molly

    ps Chemo and rads mistakes are unacceptable under any circumstances to me.  Such serious treatment requires serious focus and expert skills.  I was unnerved by the busyness and chatter in the infusion room and by having a different nurse everytime.  So glad it is over...you will be too.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2010

    (((HUGS))) I am so sorry you had a bad day and that you had to deal with an incompetent nurse.  Like the others have said, you have the right to ask for another nurse. Your body is going through a lot, listen to your body and if you need to rest, rest.  It will get better.

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  • geewhiz
    geewhiz Member Posts: 1,439
    edited March 2010

    Someone around here has the Churchill quote "When you are going through hell...keep going". I love that. I am reading some books -(which is really pointless since I cannot remember the titles nor much of what I read with my new chemobrain) - but one thing I remember is that survivors are not the ones who stay quiet and take everything with a smile on their face and take it all stocially. Survivors say "This situation sucks...but its temporary" Survivors question their doctors and change doctors that dont particpate in the process, they change techs and demand proper care. Survivors network with other like minded thinkers, eat right and excercise. Sounds to me like you are doing everything exactly right :)   

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  • Estepp
    Estepp Member Posts: 6,416
    edited March 2010

    Sweet Kimber and all ladies reading this that are not posting.. but understand Kimbers Feelings...

    It will pass. BUT.. it will take time. I wish someone would have told me this, back in my time of all this.

    It will take time to heal the inside of you! YOU ARE gonna kick CANCER to the CURB soon... and go on with your life.. NO MORE CANCER!! WAHOOOOOOOOOOOO....

    But....there will be the "hangover". Give yourself time to be mad... mourn your loss... and be sad...this is NORMAL! All you feel is OK and NORMAL!

    I never talked to, nor saw a councilor... but I can tell you sweet sweet sisters that from having many dear friends here.. and seeing the good,bad and ugly... we are all normal in feeling the way we do...

    Find just 1 dear friend( for me it is DH) and let that person hear your cry. They need to be tough.

    Or... talk to you doctor. You might need more.

    I just wanted you to know, that you are SO LOVED and SO NORMAL in all you feel. You are not alone...

    Gods Love to you!

    Laura

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  • kimber3006
    kimber3006 Member Posts: 586
    edited March 2010

    Thank you all so much for the wonderful support and encouragement!

    Geewhiz - I think we've been reading the same books.  ;)

    I think I got spoiled by those first few weeks of Taxol when it was soooo much easier than AC.  Now I don't begin to come out of the fog until Thursday.  The neuropathy is kicking in, too - harder to walk, harder to type and dropping things right and left (maybe I should switch to plastic glasses until this part is over - lol!).  I am still able to work out on my elliptical (and I would assume my bike), though, so that's good.  My onc gave me antibiotics on Tuesday for my arm.  It's still warm and pink, but the swelling is going down - woohoo!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2010

    Oh Kimber.......I feel for you.  I am still suffering with neuropathy issues, but when it was at it's worst I dropped everything and found it very difficult to keep up my regular walking. I won't go into what I'm dealing with, but neuropathy from chemo isn't fun!!!  The treatment is cumulative and the fatigue is so frustrating, especially when you're used to taking care of everything and having so much energy.  Listen to your body, it will get better..........

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