IBC Survivors in Michigan

Kathysdevoteddaughter
Kathysdevoteddaughter Member Posts: 4
edited June 2014 in IBC (Inflammatory Breast Cancer)
IBC Survivors in Michigan
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  • Kathysdevoteddaughter
    Kathysdevoteddaughter Member Posts: 4
    edited October 2010

    Hello to all.  My mom, Kathy, was diagnosed with breast cancer on 9/30/10 and with advanced IBC on 10/5/10.  The oncologist is very straight forward and very agressive in her treatment, which is good.  But still, my mom is feeling pretty discouraged about her odds and would really like to connect with an IBC survivor or someone who has been living with IBC longer.  She isn't very comfortable with online communication and I don't know that she would join a forum even if I pushed her, so I am putting this request out there for her.  I am wondering if anyone would be willing to share their stories with me so that I can pass them along to her.  Or, if you are comfortable giving out an email address, if anyone would be willing to talk to her via email.  This is all very new and scary for us.  I can't thank you enough in advance for your encouragement and support.

    Thank you again!

    Liz

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  • leisaparis
    leisaparis Member Posts: 587
    edited October 2010

    If you look in this forum under IBC survivors 15 year, you will see a list of wonderful women. I think the first one is a survivor since 1983. Makes things for the rest of us seem doable. I've only been dealing with this for a year, but there are others on here who have been dealing with it a lot longer. I'm sure anyone of us will be able to answer any of your questions. You know Been there, Done that, Doing that kinda thing. You can pm(private message) and of us by clicking on our name, it will take you to our page where you can leave a message. So sorry your mother is going through this. CANCER SUCKS. (((HUGS))) to you and your family. We are very supportive here. Please feel free to come back and ask anything. We talk about it ALL. What is your mothers complete diagnoses? There are topics on here that deal with certain things that may help answer your questions better. No matter what we will help. God Bless and good luck, we are here for you. Leisa

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  • chester2010
    chester2010 Member Posts: 101
    edited October 2010

    Hello Liz:

    (I'm Kathy too).  I'm so sorry to hear your mum has to fight this horrible disease.  My heart goes out to you and her and your family.  When I was diagnosed laslt year I thought I wouldnt live to see another birthday or Thanksgiving.  I didn't want to speak to anyone on the phone as I hated my friends asking me questions.  It was too hard to go over the same questions -- and I didnt know the answers anyway.  I know they were all worried about me and wanted to help but  I needed time to grieve the loss of my good health by myself. Next month I'm turning 70 and, despite dreadful pathology results I'm doing ok and cycle, walk  and play tennis whenever I can.  My little grandchildren are the ones who keep me going. .  The treatments are no picnic, some days are good and some not so good and some days it is very hard to keep positive.  I would be very happy to speak to your mum or e-mail her even though I'm not yet a long-term surivivor -- I plan on being one though.  You are your mum's biggest support and you'll need to be strong too. This Forum does help also IBCsupport.org are great.  Good luck and God bless.  Kathy Toronto

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  • germangal
    germangal Member Posts: 97
    edited October 2010

    Liz, I too wanted to talk with another IBC survivor when I was diagnosed 3 years ago. My oncology nurse contacted the American Cancer Society on my behalf and asked for someone in their Reach to Recovery program who had also had IBC to contact me. Not only did that volunteer contact me, but she agreed to meet with my and my mom, so mom could talk with her about what I was going to go through. That volunteer and I have since become the best of "sisters" , taking trips together, sometimes with hubbies, sometimes without. She is a 5-yr survivor and a great role model for me.

    You can do that for your mom. Call 1-800-ACS-2345, you will get a real person on the phone and tell them you are looking for a Reach to Recovery volunteer in your area who has had IBC. They will do the best to connect your mom up with someone in her age group. Hopefully there is someone close by with whom she can have face-to-face visits, nice long phone chats, etc. 

     If you don't get someone, please send me a private message with mom's phone number and I will gladly call her, since I also am a Reach volunteer but over in New England.

    Karen

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  • Kathysdevoteddaughter
    Kathysdevoteddaughter Member Posts: 4
    edited October 2010

    Ladies I can't thank you enough for your support.  This is all so new to and scary for us - as I am sure that it was for you.  We are incredibly blessed to have some great connections.  Karen, I will check into ACS, thank you.  One of my dearest friends is on the board of directors for our local Komen affiliate and she has put out a call for my mom.  Her connections are working across Michigan and in Wisconsin to try and find a survivor mentor.  If her connections and the acs fall short, I will definately let you know.  Thank you so much again!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2010

    Kathy,

    I've sent you a private message.  Just click on the private message tab above.  You'll find my email there if you should have any questions.

    Terri

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  • chester2010
    chester2010 Member Posts: 101
    edited October 2010

    Hi Terri:

    Sorry but I didnt receive the private message, maybe you could send it again.

    Happy Canadian Thanksgiving to everyone.  Weather and Fall colours are amazing here.. 

    Kathy

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  • Kathysdevoteddaughter
    Kathysdevoteddaughter Member Posts: 4
    edited October 2010

    Terri - I got your private message.  Thank you, I will be sure to pass it along to my mom. 

    With all of the searching that we have been doing to find a survivor mentor, one was right under our noses.  She went to work yesterday and discovered that not only is her co-worker a 2 year IBC survivor, but she is a trained mentor through ACS!  It's funny how the world works sometimes!

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