Discussion Board Forums Introductions! Hello and a thank you!

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  • #99891
    mbelt
    Participant

    Thank you, Shortcanuck,

    My husband was diagnosed and had his Whipple at London Bridge Hospital in the UK. 🙂  His surgeon was Rob Hutchins, who also works at Guy’s Hospital on the NHS side. We left London at the end of his treatment and moved to Zurich, Switzerland for work.  We feel both blessed and cursed. Blessed that he was eligible for surgery, cursed that it was necessary at all. It’s hard to know how to feel from minute to minute.

    I’m so sorry about your sweet husband. <hug> This disease is horrendous.

     

    #99885
    Shortcanuck
    Participant

    Dear Megan – lurking is acceptable but I’m glad you stuck your nose out to visit😜. You’ve certainly been on a journey. I’m glad you were able to visit and travel, 4 years is a long time with this disease. Feel free to reach out anytime.

    My sweet husband was diagnosed in October 2017. He was also perfectly healthy.  His disease was too far advanced for surgery and he passed 9 months later.  What was strange is that for most of those 9 months he felt very well. He had no problems with chemo and looked remarkably well. He really only started to feel ill in June and he died July 31

    Amy husband was 61

    I wish you courage as you embark on this new journey

    P.S. Are you in London UK. There’s is a very good hospital in London 🇨🇦 So I wasn’t sure

    #99884
    mbelt
    Participant

    I’m embarrassed to say I’ve been a lurker here for almost 4 years, on and off.  Thank you so much to everyone who takes the time to share their experiences and advice. I always felt like I was on the last car of a runaway train and had little to offer, so I hope to be able to contribute more now that we have a better understanding of cholangiocarcinoma.

    I hate typing that word, I really do.

    Anyway, my darling husband was diagnosed with EHCC in January of 2016. He was just shy of his 53nd birthday at the time of diagnosis and was considered fit and healthy enough for a Whipple. His surgery was postponed for 8 weeks as he recovered from acute pancreatitis (ercp induced) and we shopped for a surgeon. We traveled to various centers in the States before choosing a surgeon in London, where we were living at the time. Surgery went well (hard to use that word to describe such a brutal procedure), a few days in ICU, some weeks in the hospital managing complications from the surgery and previous pancreatitis. He had clear margins and one infiltrated lymph node. T3PaN1. Follow-0n treatment included radiotherapy (chemoradiation) and 6 rounds of gem-cis.  He went back to work post-surgery and kept working through treatment with the occasional day off.  Although we had heated discussions about him working through it, I realized that work kept his mind from wandering into dark corners and made him feel purposeful and happy. My job was to help him gain back the 40 lbs he lost from pancreatitis and the Whipple. I gained a fair few pounds along with him, I’m afraid.

    He had scans every three months for longer than usual because we were nervous about “graduating” to every six-month scans, but eventually, they kicked us out of the quarterly scan group. We traveled, we visited our children who live all over, we welcomed grandchildren into our lives. There were a few bumps in the road, healthwise for him, but all manageable with tweaks in medication.

    We had 4 years of clear scans (lung nodule found in January 2020). So, here we are again, not lurking. He had an immediate lung wedge resection completely removing the single nodule. Nothing else showed on the PET scan. We traveled again for consultations to Sloan, London Bridge Hospital and our local hospital for oncology consultation who all concurred that we should not pursue any treatment at this time. We aren’t happy with that proposal and are currently working and researching to find alternatives to doing…nothing. He is currently in excellent health, hiking, running and eating well. As he says “I am the healthiest-looking sick person you know.”

    So, hello everyone. We’re gearing up to battle the beast. Armor on and all that.

    Thanks again,

    Megan

     

     

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