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Donna Message
Donna Message Member Posts: 21
edited September 2016 in Metastatic breast cancer
It's been a few days and though yesterday Wednesday was in comparison a good day with little pain I thought today would be better but I instead it proved to be a really painful afternoon on both sides of my ribs. I even made plans for the weekend but I realiased I have to be patient. A lot more patient. It's disheartening and sometimes I cry a little because it does hurt . I'd rather lose a leg than have to go thru this. Anyway I look forward to recovery and I hope that it comes real soon. Thanks for reading thanks for sharing. Distressed Donna
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  • Robyn W
    Robyn W Member Posts: 1,932 ✭
    edited March 2015
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    I am so very sorry that you have so much pain.Perhaps on Wednesday,when you felt a little better,you did too much?Pain is a terrible thing,because it controls us not only physically, but mentally .Donna I hope that you feel a little better soon.Try to take it slowly,and please stay connected on here ,even if the only thing that we can do for you is to listen.Sending you a big cyber hug.Robynxox
  • JeanineG
    JeanineG Member Posts: 135 ✭
    edited March 2015
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    Hi Donna

    I don't know the circumstances for your pain - I'm assuming you've had one or both breasts removed. I had bilateral mastectomies in July 2012. It was the most hideously painful experience I've ever been through. The most important thing that I learnt through it all is to be your own advocate and get an adequate pain-management plan in place. My surgeon wasn't really helpful in that regard so I went to see my GP who was wonderful. He put a plan into place and life was much more manageable after that. I also soon realised that even though I felt better, my body needed to heal and the best thing for that was rest, rest, rest!

    Good luck and don't lose faith - the pain does go!

    Xxx
    Jeanine
  • JeanineG
    JeanineG Member Posts: 135 ✭
    edited March 2015
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    Hi Donna

    I don't know the circumstances for your pain - I'm assuming you've had one or both breasts removed. I had bilateral mastectomies in July 2012. It was the most hideously painful experience I've ever been through. The most important thing that I learnt through it all is to be your own advocate and get an adequate pain-management plan in place. My surgeon wasn't really helpful in that regard so I went to see my GP who was wonderful. He put a plan into place and life was much more manageable after that. I also soon realised that even though I felt better, my body needed to heal and the best thing for that was rest, rest, rest!

    Good luck and don't lose faith - the pain does go!

    Xxx
    Jeanine
  • JeanineG
    JeanineG Member Posts: 135 ✭
    edited March 2015
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    Hi Donna

    I don't know the circumstances for your pain - I'm assuming you've had one or both breasts removed. I had bilateral mastectomies in July 2012. It was the most hideously painful experience I've ever been through. The most important thing that I learnt through it all is to be your own advocate and get an adequate pain-management plan in place. My surgeon wasn't really helpful in that regard so I went to see my GP who was wonderful. He put a plan into place and life was much more manageable after that. I also soon realised that even though I felt better, my body needed to heal and the best thing for that was rest, rest, rest!

    Good luck and don't lose faith - the pain does go!

    Xxx
    Jeanine
  • Donna Message
    Donna Message Member Posts: 21
    edited March 2015
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    You know I havent had any breast removed one because back then in 2009 my surgeon at the time who wanted to do a double mastectomy referred me of course to a oncologist and she advised that because it had matasticized (I could never get my mouth around that word) I didn't need to have a mastectomy. So I still have both and I've got to play the waiting game with now. If I listen to my body really listen I'll get through it I thinK. As for the pain management I am not getting any advise at all from radio oncology though fortunately I have a medical oncology appointment this coming monday at RPH so I'll ask my Dr for advise there. I hope she'll be flexible in how I want to or not want to continue taking Tamoxifen. I hate it with a passion because it's changed the landscape of my body. If any body tells me its necessary I continue then they should be willing to swap places with me. My physical and my mental and physiology being are all one; it's not separate as far as i'm concerned. They're all connected and to change one area of me changes everything. Well that's how I'm feeling now the next few months will give me detail as I continue on this journey. Thanks again for your message. It really heartens me when I get feed back from this wonderful group. I am glad you are in a good place and I look forward to when I get there too. I will continue to blog here and look forward to your comments. Take care, Donna

  • adean
    adean Member Posts: 1,036 ✭
    edited March 2015
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    Hi there I also found my radio onco was not the greatest sympathizer, it's like they have seen so many you feel like they think here's another I found if my appointment was late in the day they seemed over it, I found the breast care nurses the ones who actualy listened and got things done for you. As Robyn says pain is like a big weight , it almost puts you in the black hole doesn't it, you have the right to cry , but it does feel better when you have a good weep. And you know what be firm when you go , I know it's hard because all your energy is probably zapped away, hug to you. Regards adean
  • Donna Message
    Donna Message Member Posts: 21
    edited March 2015
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    i managed to get some housework done this morning and taken my pills and supplements as soon as i awake. I feel a lot better but i did feel a few spasms which means hang the broom up and sit down. My cousin popped in and told me not to attempt opening or shutting the front gate, which I did, because he knew it was opened this morning and when he came back well it was shut. I knew it wasnt easy so yeah I have to listen to him there. My cousins a Fifo as is my husband so I'm going to be doing some things myself but and its hitting me now, the realisation that I'm stuck at home. I love being here but I love being out and about seeing my friends, doing things together, window shopping etc etc its going to be hard lying low. But thanks heaps. You take good care of yourself too aye. Kindest Regards, Donna

  • Pink66
    Pink66 Dragonfly Posts: 366
    edited March 2015
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    Sorry that your mets are giving you grief at the moment..  It is so damn hard to just keep on moving when there is such a consistent and level of pain going on..  If you mind your Medical Team are not enough relief to be getting around comfortably..  Perhaps speak with your GP or BCN (if you have one) about referring you for specialised pain management assessment and treatment..    Getting that sorted out and reduced will make a huge difference..

    I do understand also the issues with Tamoxifen and with Hormone + (I did them for 7 years)  they usually place you on one of them as even though the cancer grows indepentendly of the horemones.. It eats them for breakfast and grows more quickly because of them.. So hence the tablets to murder our innocent little hormones!!!.. Post menopausal ones can be fun too.. I am currently on Femara.. 

    I hope you get some relief soon and get to do some of those things that you love doing..  It is amazing when you get little wins just how great you can feel.

    Also, if you are interested in the Advanced Group, I am a facilitator for it and would be happy to add you in.. Just let me know..

    cheers, Sharon (aka Pink66)

  • Pink66
    Pink66 Dragonfly Posts: 366
    edited March 2015
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    Sorry that your mets are giving you grief at the moment..  It is so damn hard to just keep on moving when there is such a consistent and level of pain going on..  If you mind your Medical Team are not enough relief to be getting around comfortably..  Perhaps speak with your GP or BCN (if you have one) about referring you for specialised pain management assessment and treatment..    Getting that sorted out and reduced will make a huge difference..

    I do understand also the issues with Tamoxifen and with Hormone + (I did them for 7 years)  they usually place you on one of them as even though the cancer grows indepentendly of the horemones.. It eats them for breakfast and grows more quickly because of them.. So hence the tablets to murder our innocent little hormones!!!.. Post menopausal ones can be fun too.. I am currently on Femara.. 

    I hope you get some relief soon and get to do some of those things that you love doing..  It is amazing when you get little wins just how great you can feel.

    Also, if you are interested in the Advanced Group, I am a facilitator for it and would be happy to add you in.. Just let me know..

    cheers, Sharon (aka Pink66)

  • Julie Bache
    Julie Bache Member Posts: 111
    edited March 2015
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    Hi Donna.

    I have been living with bone mets for 7 years now. Had some ups and downs with pain, most severe because of a femur fracture for which I have had 7 lperations! pain is well under control now and I take very few painkillers. However, I have three weekly injections of xgeva ( denosamub?) and previously 4 weekly zometa intravenously. These are both types of bone strentheners and I believe help with the pain as an added benefit. Perhaps you could ask your oncologist about these? I was on tamoxifen for 5 years and then femara, both hormone suppressors. since they stopped working I am now on xeloda. All of these drugs play havoc with your body in some way! I try not to let it fet me down and focus on making the most of every day. It does get better!! Though the rollercoaster keeps on rolling!

    Hopefully you can get that pain managed soon so that you can get back to enjoying each day.

    Hugs to you, Julie. xx 

  • JeanineG
    JeanineG Member Posts: 135 ✭
    edited March 2015
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    I'm so pleased to see that you have had responses from ladies going through the same experience as yourself. I hope this makes you feel less alone, and helps you realise that there are solutions to your pain and now you can go and ask for them.

    Thinking of you and wishing you only good health and freedom from pain. Remember that if you do too much, it won't matter how many pain-relievers you have, you will be in pain. Rest!

    Sending more hugs,
    Jeanine xxx
  • JeanineG
    JeanineG Member Posts: 135 ✭
    edited March 2015
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    I'm so pleased to see that you have had responses from ladies going through the same experience as yourself. I hope this makes you feel less alone, and helps you realise that there are solutions to your pain and now you can go and ask for them.

    Thinking of you and wishing you only good health and freedom from pain. Remember that if you do too much, it won't matter how many pain-relievers you have, you will be in pain. Rest!

    Sending more hugs,
    Jeanine xxx
  • adean
    adean Member Posts: 1,036 ✭
    edited March 2015
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    Just you don't love the way everyone makes you feel less alone love and hugs to every lady that responds to a blog, where would we be without you.xxxadean
  • Lisajane72
    Lisajane72 Member Posts: 21 ✭
    edited March 2015
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    Hi There - how do I join the advanced site? I was diagnosed with breast cancer 5 weeks ago, had a lumpectomy and it went to my lymph nodes. I found out yesterday it is in my ribs and spine so am now secondary. It's been a whirlwind 5 weeks.  I love this site but I find it a bit tricky to navigate....Thanks & regards. lisa

  • denisep
    denisep Member Posts: 14
    edited March 2015
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    Hi again, I forgot to ask my new chemo is caelyx, has anyone had this, big thanks again, Denise xxx

     

     

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