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No treatments for me.

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  • CelineFlower
    CelineFlower Member Posts: 145
    edited November 2012
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    Cindy... and you and your family  seem to come threw it shinning purple... :)

    we are not the only survivors

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    I think that after going through so much that I'm never surprised anymore when anything goes wrong. I'm having more pain in my arm every day but luckily it isn't unbearable yet. A few pain pills usually makes it a lot better. I really don't think that I want to chance having another surgery, especially after having a conversation with my best friend this morning about how bad my last surgery was on me. The hospital never does give me any kind of relief because they try only giving me small doses of pain meds. I tell them every time I have a procedure done that they will have to give me large doses of pain meds and that because I've been on pain meds for many years that what would knock an average person out isn't even what I normally take on a daily basis. Hospice was the only one so far who actually gave me enough pain meds to get rid of severe pain. I think that I'm better off to just let the cancer do its thing and wait until I need hospice again because I know that they will take very good care of me when I need them to. I don't like that those are my options but even my pain Dr who I love is never available in the middle of the night when I needed him to be there for me. I'm starting to be able to feel where the tumor in my lymph nodes is. I never was able to feel any of my other tumors like I feel this one. Other than my arm hurting I don't feel sick at all. I do get tired really easily but so far I'm doing ok I think. I think that leaving it alone will give me the easiest way to have my pain under control as it gets worse and spreads more. What a shitty thing to have to consider.Undecided I hope everyone is feeling well today and will continue to do so.

    All my love, cin

  • Bren-2007
    Bren-2007 Member Posts: 842
    edited November 2012
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    Cin,

    Just want you to know you're in my thoughts.  I am so sorry your daughter was very sick.  It must have been so hard for you.

    My friend's pain is barely managed with the morphine now and the vertebra in her back are being taken over by the cancer.  I worry so much she may get a fracture.

    You're so right .. it is a "shitty thing to have to consider."  I don't think if I was in your shoes I would have the surgery either.  The hospital does not seem to manage your pain very well.

    I hope your day is a good one.

    hugs,

    Bren

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited November 2012
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    Cin, thinking of you.  Have you seen an interventional pain specialist recently?  I saw one this week, and she thinks she can help relieve some of the pain be selectively injecting a nerve that seems to be the site of pain.  I am wondering if something like that might be helpful for you.  It can reduce the amount of other meds needed in some cases, and wouldn't necessarily involve the risks associated with more surgery.  I will try to do a little more research on it.

    There is a pretty good site on pain issues by a surgeon who seems to listen to and learn from his patients:

    http://www.cancerlynx.com/mastectomypain.html

    Hoping you all have a restful night.  Sending lovinkindness to you all.

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    BinVa,

    I wish that your friend would try hospice, I hate hearing that she is suffering like she is. I swear to you that they do their best to help people live longer and better and they do not just write people off and help the death process along. It breaks my heart that she isn't comfortable with the idea of hospice. I wish her and you well, and hopefully she'll find a way to get what she needs to enjoy what time she has left. What a terribly painful time she must be having right now. I'll be thinking of her and you.

    Linda,

    I read his paper and I'm so happy to hear that a surgeon is taking this problem seriously...some don't. My pain Dr is an Anesthesiologist and has been treating me for years before I was even diagnosed with bc. Most of my problems before were from my lower back and where my leg was amputated. I've been trying different things for the nerve pain in my leg and the last surgery I had on my leg was to have neromas cut out, they cut the sciatic nerve up about three inches higher to make sure that all the neromas were gone...and it worked. I still have some pain in my leg when it gets cold(I don't have good blood circulation in my stump) or when it's cold outside, sometimes for no reason at all but it is way less often than before. I have refused to let my pain Dr to anything more with shots or different pain procedures because with me if anything can go wrong it always does. I don't want to chance having anything more to deal with than I already have. I do like that people have the chance to try different things with shots and surgeries because they do work well for some. With me I'm kinda stuck with plain old pain meds, but so far their still working and when I need stronger IV meds I'll just go back onto hospice. They are the only ones who can deal with the severe pain that I have had and I trust them not to let me suffer needlessly. Are you still planning on coming to Az?

    All my love, cin

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    I've started to have pain in my leg now, the whole femur feels like its bruised really bad, but I haven't done anything to hurt it in any way. I've had increasing pain in my right arm as well so I have to think that the bc is spreading more now. It wasn't bothering me as much before these past two days. I'm not surprised at all, but I still don't like the thought of it spreading more. I guess I always knew that it would, and I've been kind of watching for any new pain anywhere. I'm still very much at peace with my choices and I have a clear idea in my mind of when I'll agree to go back onto the hospice service. I have changed one thing though...I had decided that I would stay home for as long as I could tolerate the pain and then only go inpatient when I thought that the end was very near (I didn't want my family to have the memory of me dieing at home). But now I want to go inpatient as soon as I start needing IV meds, where I can be cared for by Dr.s and nurses who are there 24/7. I didn't like the home care that I went through before. There was too much time between me having uncontrollable pain and when the Dr ordered the meds...then I had to wait for hours for anything to be delivered. I don't think that is going to happen for a while yet, the pain pills are still working, but I felt the need to tell someone that I was feeling a little worse and I really don't want to tell my family about that this close to the holidays. All this time I've been worried about walking on my crutches with my arm hurting and now I have pain in my only leg. I guess it could be something else and hopefully it'll just go away on its own. I guess I'll just have to wait and see.Undecided

    All my love,

    cin

  • ali68
    ali68 Member Posts: 644
    edited November 2012
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    Cindy, do you need to tell the docs about the new pain? I hate your suffering I wish they could do more for you. Great news on the baby and yes girls are a pain in the bum.



    Speak soon



    Xx

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    Ali,

    I'm supposed to see a new onco soon, not for treatment but for someone to say exactly what my prognosis is at this time for the hospice Dr.s. I'm still doing ok with my pain meds but I can't help but be concerned with having pain that's getting worse. I just want to make sure that when I'm ready for hospice again that they have all the information on my bc to make them ok with me being on hospice again. Last time they wanted me to keep having more tests and I don't want to so hopefully an onco will be able to tell them what they need to know without me having to go through anything else. I can't wait to meet my grand daughter!!Laughing

    cin

  • ali68
    ali68 Member Posts: 644
    edited November 2012
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    Your so bloody brave and wise Cindy, my biggest fear is recurrence as the docs say I have a very high chance.

    I think I will hit the bottle and eat chocolate if and when it happens.



  • pallir
    pallir Member Posts: 227
    edited November 2012
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    Thank you for your sweet pm, Cin. It is so precious to me, especially as I read just a few of your entries about what is going on with you.  I am humbled and blessed by your gift of grace to me. I am praying for you, my new friend and sister; that today you may have less pain, that you may experience more peace and rest, and that you may be surprised by joy. Your kindness has reminded me of God's faithfulness to me.  Today you have been God's hands through which He has shown His love for me, and I am so grateful.

    You are precious . . .  

    Angie

  • 1Athena1
    1Athena1 Member Posts: 672
    edited November 2012
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    Cin,

    I am really glad you are letting us know about the pain. There is a thread or place on the Stage IV forum where you can go to a secure web site and enter your personal contact information so that if no one hears from you we have a way to find out or connect with a family member/friend that you designate. If that is something you are comfortable doing, it would be a good way to ensure that you are always reachable.

    If you do go inpatient I hope you have easy access to a laptop with Internet!

    Sorry to hear about the pain. It is what it is, as they say, but you are such a valuable, loving person. We will be rooting for your comfort.

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    Athena,

    I sent you a pm with contact info just in case you get worried.Wink

    Ali,

    You'll be just fine no matter what happens, I really believe that. But, chocolate never hurts.

    Angie,

    I'll be here for you as much as I can. I think you'll find a lot of very good caring people here. I know I did.

    I saw my pain Dr and he changed my meds. I start them in about a week so I'll have to deal with it for a few more days. I just need to keep busy till then.

    All my love,

    cin

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited November 2012
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    Cin, I am so sorry to hear you are having more pain, glad your pain doc is helpful. My prayers are with you.



    I am going for some kind of costobrachial nerve injection this afternoon. I got curious about the anatomy of ALND and all the nerves. My BS had told me a year ago that she was able to preserve the nerve that is often cut, so she did not expect me to have lots of problems. But it seems that it isn't just cutting that nerve that causes problems, also tugging on it and stretching it during surgery can damage it as well and set it up for chronic pain misfirings. So the pain doc is going to look at it with ultrasound to see if there is a specific site that might be targeted for the injection, and if not, I think she will just inject it at its highest point to try to get some relief for me. Now, this is NOT the worst pain in the world, nothing like the bone pain, but it is just one more nagging take-the-joy-out-of-living type of pain that I am hoping can be lessened.



    I spent some time researching about all the types of pain that breast cancer patients have, and even I was amazed at how much is out there, and how little is done about it, and how little we are told about it before surgery, chemo, rads, other drugs.



    Sending up a prayer for all of you that you may be filled with lovingkindness, free of fear, and free of pain.

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    Linda,

    I hope that everything goes well and it works for you. The last thing you need now is another pain, especially if it can be avoided. Let us know how it goes...now I'm curious if I had that nerve cut?Surprised It could explain a lot if I did.

    All my love,

    cin

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    My meds were changed a few days ago so I'm still going through the transition and it really sucks! I hope that the new pain meds work better that the other ones, I was on them for years so my body is really used to them. I forgot about my onco appointment so now I have to try to remember to reschedule on Monday and I have to get the prognosis from the surgeon that did my lung biopsy to have everything ready for the hospice Dr.s. My brain just isn't being user friendly lately. I did have a great Thanksgiving, even with the pain and withdrawals. I would give anything to be healthy again.

    cin

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    I've been back in the hospital because I'm having so much pain and my lungs are starting to give out. I don't have any interest in eating anymore and I only drink enough water to take my pills. I feel like shit but I didn't want anyone to think that I was dead or something...I just feel like a walking corps. the Dr.s called hospice again and a social worker is trying to speed up the process to get be back onto their service but it seems like it's taking forever. I'll have Rick check in from now on because this was the only time in a few days that I could even type.

    All my love to everyone,

    cin

  • blackcat2012
    blackcat2012 Member Posts: 116
    edited November 2012
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    (((Big CyberHugs Cindy)))

  • ali68
    ali68 Member Posts: 644
    edited November 2012
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    Cindy, this makes me cross and sad you shouldn't be in pain. You have had enough pain for twenty people. I hope you get sorted very quickly and your doing your fab blog soon.



    Keep going my dear friend



    Alison xx

  • moderators
    moderators Posts: 8,287
    edited November 2012
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    Cindy-Rose, thank you for checking in. We're all thinking of you, and sending you warm, comforting wishes.

    • Your Mods

  • CelineFlower
    CelineFlower Member Posts: 145
    edited November 2012
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    Oh Cindy Rose...

    I will send you purple bubbles...filled with my love

    You are beautiful... and strong

    I am so touched by your journey and have learned much from you..

    Please remember you are not alone

  • blinthedesert
    blinthedesert Member Posts: 37
    edited November 2012
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    Thinking of you Cindy-Rose - sending you wishes for relief and peace.

  • leggo
    leggo Member Posts: 379
    edited November 2012
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    I'm so sorry Cin. Thinking of you and sending all my love.

  • 1Athena1
    1Athena1 Member Posts: 672
    edited November 2012
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    I'm so sorry, ((((Cindy-Rose)))). I do hope they can get the pain under control soon.

  • Cindy-Rose
    Cindy-Rose Member Posts: 77
    edited November 2012
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    Thank you so much everyone!!! I had the admission nurse just leave my house and after looking at me she called her Dr and they had me admitted into hospice within ten minutes after she left my house. She'll be coming back in a few minutes for me to sign the papers and hopefully I'll be inpatient very soon to get the pain under control, then maybe come home on IV meds. The have been so nice to me and said that I should have been in hospice all along. I really will try to keep everyone updated but I feel so bad that it will probably be Rick from now on unless I get feeling better soon. I hope that you all are doing well and I wanted you to know that I'm finally getting the treatment that I've needed for so long.

    All my love to everyone,

    cin

  • itsjustme10
    itsjustme10 Member Posts: 64
    edited November 2012
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    Hi Cindy-Rose..I just wanted to tell you that the grace and dignity you are showing throughout this whole situation is incredible.  (((hugs)))

  • proudmom_wife
    proudmom_wife Member Posts: 176
    edited November 2012
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    Hi Cindy-Rose,

    I saw this thread and just started reading it.  I do not know what to write to express how your writing, your honesty and grace has touched my heart.  You are in my thoughts and prayers.  Thank you for being you.  I hope you can feel the love of these cyber {{HUGS}}.

    Patti

  • odie16
    odie16 Member Posts: 1,415
    edited November 2012
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    I just wanted you to know how much your words and strength have meant.... May you be free from pain and well cared for by hospice..... Sending prayers, love and light.

  • sarahsmom
    sarahsmom Member Posts: 276
    edited November 2012
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    Hope you are resting easy tonight, dear friend. Glad all of these lovely ladies are keeping you company with flower showers and wonderful words of support :-) Sending lots of hugs, love and peaceful thoughts your way!

  • ElaineForCindyRose
    ElaineForCindyRose Member Posts: 76
    edited November 2012
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    greetings ladies,

    a few of you know me, i'm Cindy's sister -and when she needs someone to take over her blogs, I step up and make sure you all are aware of how she's doing, relay messages back to you after i read her your posts, and try to help any way i can. i live on the east coast, so the time's a little different than cindy's, but should you want to get in touch with me you're very welcome to pm me & i'll share contact info and do what i can to help you out.  i haven't read much of this thread -so i have some catching up to do ... what i have read is that there's a lot of pain you're suffering with ~I really hate that. it makes me sad that there are so many kind, loving, supportive & giving people who must suffer for no real reason that makes any sense. 

    1. well, i'm gonna go for tonight. i'll be back tomorrow -i've 3 massages lined up for some regular wonderful clients from a chiropractor's office about 30mins from home. then i'll have time to catch up on this thread, talk with cindy again & get you all up to date. 
    2. right now, she' hanging in there, in pain (i wonder, does that go without saying now?) but eagerly awaiting the hospital bed being delivered to the house 
    3. i don't know what i pushed to get the numbers coming up like this LOL    
    4. i'm falling asleep typing so i'm outta here folks!  nitey nite

    may you rest well 

  • 1Athena1
    1Athena1 Member Posts: 672
    edited November 2012
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    Elaine,

    Welcome and thank you so much for posting. Please tell Cindy-Rose how much we hope the best for her. I will look forward to your posts.