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Discussion Board Forums Introductions! Hello everyone!

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  • #59570
    mlepp0416
    Participant

    Just want to chime in here and welcome you to the site.

    We did not call in hospice until the very end. To my husband Tom, having ‘hospice’ was quitting and he said he would not quit. After his last 3 1/2 days in the hospital, then sent a pallative care person out and I took her aside and told her that he needed hospice.

    The hospice team was there in about 1/2 hour and the next day two gals came and gave him a bed bath and shaved him. All we had to do was to run to the pharmacy and get the meds they ordered for Tom.

    He was only on hospice 3 days before he passed and after he passed they were there within 1/2 hour or so and took care of all the paperwork and calling the cororner and the funeral home. That made it easy on me and my two daughters did all the phone calls that needed to be done.

    After T’s experience with inpatient hospice, I’m very glad that I kept Tom at home and I made sure he got his morphine when he needed it. He died peacefully, at home, which is where he wanted to be.

    Again, Welcome
    Margaret

    #59569
    karend
    Participant

    Roni,

    I am so sorry for my late reply. I just noticed your posting today.
    I will preface my reply with this: I am speaking from a nursing point of view only. I do not pretend to understand the responsibility that weighs on a physician in practice. That being said, the needs of the patient are what matter the most.

    I completely agree with you on all of your points. The physicians that I have encountered who cared for my mother-in-law, did not know how to treat this cancer. Most importantly, the complicated management of symptoms, i.e. nausea/vomiting, etc. I cannot say that I had much experience with it either until our family was faced with it.

    I feel that it is absolutely necessary to educate the medical community about this cancer. We can’t all be experts on everything, but being that the cases are so rare, if a patient is newly diagnosed the first thing an Oncologist should do is assist the patient/family to consult a major CC treatment center. Of course this is just my opinion…..but I saw first hand how the lack of experience with this cancer can severely impact the quality of life of a patient with CC.
    I am learning that as a advocate for our foundation, educating the physician about our website/support is key! If the physicians know about us, then they can in turn pass this information on to their patients.

    In regards to hospice, I have found that the speed in which a hospice consult is placed really depends on where you are receiving care. I have worked on both East/West coasts, and I have seen very different takes on hospice care. Some places are more progressive than others.

    Hospice is a good thing! Palliative care/Hospice physicians, nurses, social workers, nursing assistants, etc. are skilled at managing pain and other symptoms. They are able to provide a more holistic care plan; one that takes into account the daily life of the person they are treating. My Mother-in-law too was afraid to accept hospice. She thought people would feel that she was giving up hope. The thing about hospice though is that it is not about giving up; it is about hope, joy, LIVING, and loving. Patients and families are given an educated and knowledgeable support system that can help to make life more manageable. Also, there are studies that have proven that patients trend toward living LONGER while on hospice because they are holistically cared for.

    http://www.nhpco.org/i4a/pages/index.cfm?pageid=5746
    http://www.nejm.org/doi/full/10.1056/NEJMoa1000678

    Roni, thank you so much for the wonderful links! I learned a lot while looking through them. I most definitely will be in touch. :)

    -Karen

    All information is this post is purely informational and not intended to be taken as medical advice.

    #59568
    ronidinkes
    Member

    Good Morning Karen,

    I think educating Physician’s on this disease is critical. As many lump in into either pancreatic cancer/ or liver cancer, and it is Bile Duct Cancer.

    This are a few excellent educational tools:

    http://www.msnbc.msn.com/id/39102353/ns/health-cancer/t/top-deadliest-cancers-why-theres-no-cure/

    http://vitals.msnbc.msn.com/_news/2012/04/03/11005353-half-of-cancer-survivors-die-from-other-diseases

    http://vitals.msnbc.msn.com/_news/2012/04/04/11022340-suicide-risk-spikes-in-week-after-cancer-diagnosis-study-finds

    http://www.msnbc.msn.com/id/35610331/ns/health-health_care/t/hospice-palliative-care-aim-ease-suffering/#.T32nm2CLEXw

    I find too often that patient’s wait too long for hospice services, and fear it. My mother recently passed on March 17th and she fought not to have hospice in November 2010. In fact she fired Hospice in the beginning.

    However, when the pain became too much in Mid February we finally brought them in. Patient’s need to learn it is not surrendering but actually those in hospice often can have a better quality of life. Although, all hospice care does differ.

    If I can be of any assistance please let me know.

    Regards,
    Roni Dinkes

    Many do not understand you do not have to go to a facility but you can stay in your own home on your own terms. Physicians need to educate patients with regard to this option.

    http://www.amazon.com/The-Better-End-Surviving-Medical/dp/1421404184/ref=sr_1_1?ie=UTF8&qid=1333634873&sr=8-1

    #59567
    karend
    Participant

    Thank you all for the warm welcome!

    -Karen

    #59566
    marions
    Moderator

    There is no doubt that our Karen will be an enormous asset to all touched by the disease of Cholangiocarcinoma. I know – I have met her. We are very fortunate to have you join our team, dear Karen. Thank you from the bottom of my heart.
    Hugs
    Marion

    #59565
    pamela
    Participant

    Hi Karen,

    Thank you so much for taking on such a difficult job. I really appreciate everything you have done and will do for CC patients and their families. What a generous and caring person you are. All the best to you.

    -Pam

    #59564
    lainy
    Participant

    Hello, Karen and it is so good to meet you! Thank you for stepping forward to Advocate for us as I know it is a challenging and huge job you are taking on. We so appreciate it and look forward to your posts! It takes a special person to do what you have set out to do. Wishing you the best and again many thank you’s.

    #59563
    pcl1029
    Member

    Hi,
    welcome aboard.
    I am just a patient and I have a lot to learn from everybody.
    Whoever is willing to devote time,energy and other means to this disease is
    care about another human being’s well fare and for that I am thankful for your effort.
    God bless.

    #6603
    karend
    Participant

    Hello to everyone on the board! I wanted to take a moment to introduce myself. My name is Karen, and I am the new advocate that attended SSO with Marion. It was absolutely wonderful to meet her, and she taught me so much while I was there.
    A little background about me: My interest in Cholangiocarcinoma stems from the illness of my dear Mother-in-Law. She was diagnosed with this horrible cancer in June of 2010. Sadly, she passed away in early October 2010. We all fought very hard to get her the best care possible.
    My work as an Oncology nurse has in some ways become harder due to her passing. That being said, I felt compelled to make a difference outside of my regular duties at the hospital. I don’t know how good I will be at this, but I will try my best to advocate for you all! I am passionate about cancer care; patients and their families always come first!
    In regards to the Society of Surgical Oncology meeting, I am actively working at typing up the poster presentations for you all. I will post the information sometime early this week.
    I wish you all well, and look forward to getting to know everyone.

    Thank you!
    Karen

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