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  • #96896
    bglass
    Moderator

    Hi everyone,

    I am pleased to bring to your attention a new cholangiocarcinoma patient blog:  Because I Can, Sir – authored by Susan Braden,   https://becauseicansir.com/

    For those who attended this year’s Cholangiocarcinoma Foundation annual conference, you will remember Susan’s amazing one-women musical show sharing the same title.

    If there are any other patient or caregiver bloggers out there, it would be great to hear from you.  And again, big thanks to those who share their stories, whether through blogs or postings on this board or other social media.  You may not know or meet all your readers, but we are out there, numerous, and so appreciative to know we are not alone facing a rare cancer.

    Regards, Mary

     

     

    #96573
    teresamaryde
    Participant

    Hi Mary,

    Thank you for compiling and curating this blog collection.  It is so helpful to have them organized in one place.  This helps to show the wealth of knowledge and experience that comes from the Cholangiocarcinoma patient and caregiver experience and I hope that many others will benefit from the information and stories shared by the bloggers.  Steve and I also very much appreciate that you have included his blog in the list.

    It was lovely to meet you at the conference!

    Warm regards,

    Teresa

    #96568
    gavin
    Moderator

    Hi Mary,

    Great stuff, thanks loads for posting them all here! And of course, we have our own blog here on the site too, Cholangio what?

    https://cholangiocarcinoma.org/get-involved/cholangio-what/

    Hugs,

    Gavin

    #96562
    bglass
    Moderator

    Hi Folks,

    There is some excellent blogging going on in Cholangiocarcinoma-land.  I put together a selection of blogs which are listed below.  All are beautifully written — full of grace, optimism and insights, even humor.  Their authors have provided specific and detailed information on cholangiocarcinoma diagnosis and treatments, and take readers on their journeys over a span of time.

    Please note that I am using the (d) tag to indicate blogs by or about a patient who is now deceased, in case that is something sensitive for you.

    In no particular order, here is my list:

    1. http://nowwithouthesitation.blogspot.com – Blog authored by Stephen Ellmann who is a law professor and two-year survivor.

    2. http://thecancerassassin.blogspot.com/  – Blog by Laura York (d) who was a long-time cholangiocarcinoma survivor. She was active in pursuing complementary treatments and her blog provides a lot of information on diet and supplements.

    3. https://caitandthetumortim.wordpress.com  – Cait Telaak (who also blogs for the Foundation) has authored a wide-ranging discussion of her extensive research on cancer treatment plus many insights on coping with an unexpected cancer diagnosis.

    4. http://pattysjourneyoffaith.blogspot.com – Patty Corcoran is a long-term survivor with an amazing journey including having participated in multiple clinical trials.

    5. http://decample.tumblr.com – Mattie D vs. the Evil C – Tales from “Camp Chemo” authored by Matt DeCample, a stand-up comedian, and punctuated with a really fine selection of music videos.  (Thanks, Matt, for posting a link to this discussion on your blog.)

    6. http://www.mypscblog.co.uk – Authored by Michael Hunter (d) who was diagnosed first with primary sclerosing cholangitis then cholangiocarcinoma. Thoughtful observations on pain management and end-of-life care.

    7. http://mooreaboutthis.com – A caretaker blog by the courageous spouse of a cholangiocarcinoma warrior (d). Discusses experience with Keytruda and end-of-life care.

    8. https://concretefaith.org/2013/04/27/learning-the-truth/  – Story of Travis Robert’s (d) journey with Stage IV cholangiocarcinoma, includes video segments.

    9. http://johnfinch.me.uk/index.html –  John Finch does not identify his diagnosis. This blog would not be everyone’s cup of tea – in the section titled “Diary” he gives an unvarnished and detailed account (and by detailed I mean graphic) of his liver resection and recovery in a British hospital. Possibly helpful for anyone curious about what to expect. I found it worth looking at.

    I am so appreciative of the time and thoughtfulness dedicated to these blogs, and the amazing people who are sharing their experiences. There are other cholangiocarcinoma patients and families who have equally great blogs, but I did not include them on this particular list because they focus less specifically on their medical details. That would be a list for another day.

    If you know of other notable blogs, or if you are a cholangiocarcinoma blogger, please post your links.

    Happy reading!

    Regards, Mary

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