shellina

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 44 total)
  • Author
    Posts
  • in reply to: TO MY CHOLANGIO CARCINOMA FAMILY #94746
    shellina
    Member

    Lainy,

    Although I do not post much since AL passed, I still read posts daily. I was sad to read that you will be cutting back. I understand how you feel though. I thought since you always had a kind word or poem, that I would tell you how we all feel about you in a poem.

    Saying goodbye
    Is the hardest thing to do
    We never thought we would
    Especially to you

    You always listened
    And knew what to say
    Knew when to give a hug
    When we were having a bad day

    Noone will ever take your place
    We can always promise you this
    It’s hard to find someone like you
    So know you’ll always be missed

    God bless you Lainy.

    Best wishes,
    Shellina (AKA Shelley)

    in reply to: Dana Intro #92371
    shellina
    Member

    It sounds to me like he could be very close. His bilirubin must be very high since they were not successful in inserting a sent. The fluid is likely ascites. The confusion is likely caused by a high ammonia level which is due to his liver function. My husband passed two years ago. He also chose no treatment. Your dad is very brave to do this without pain meds. I hope you can get hospice in to help. Not only will they help him, they can help you too. Good luck and God bless you and your father.

    in reply to: New Member #90397
    shellina
    Member

    John Prine? Now that’s good music! I like your attitude and I like your taste in music. :-)

    in reply to: Mark Volland #87901
    shellina
    Member

    Kris, I would also like to send my heartfelt condolences. Mark was such a fighter and it truly seemed as though he had nine lives. GOD must have needed another angel. I’ll be down here in So Cal raising a nice glass of milk stout in Mark’s honor next weekend. My thoughts and prayers are with you during this difficult time.

    Shelley

    in reply to: Mommy #84041
    shellina
    Member

    I get signs through music. When I miss Al the most, or I am upset about something, one of Al’s songs will come on the radio and remind me that everything is alright. It’s amazing. :-)

    in reply to: Feeling down #85846
    shellina
    Member

    What???? This So Cal girl says “Go Buckeyes!”

    in reply to: First holidays without Frank. #86018
    shellina
    Member

    Nancy, I also lost my husband seven months ago. The holidays were really hard. Harder than I imagined they would be. I know it will get easier. This year I made sure to hang a beautiful ornament on my tree with a picture of Al. We also had a tradition of eating lobster tail and king crab legs every New Years Day. Well you know what, I went to the store today and got myself a lobster tail and a couple of legs and I loved it. I talked to him while I was eating. :-) I hope we all find peace and comfort in this new year. I wish peace and comfort to all who are fighting this disease. Peace and comfort to all of the caregivers. Peace and comfort to all of us who have lost our loved ones. We have to keep fighting the good fight and make sure everybody knows about cholangiocarcinoma. It’s the only way we will one day find a cure.

    in reply to: My husband Al #82710
    shellina
    Member

    Today would have been our anniversary. Wait, I guess I should say, it is our anniversary. I still miss him so much. However, I am so grateful he is no longer suffering. I still read this forum everyday. I feel so bad to see so many new people diagnosed. Especially the young. I pray everyday for a cure for this awful cancer. God bless you all.

    in reply to: New member of the club #77696
    shellina
    Member

    Duke, I always LOVE to read your posts. They are always so upbeat and funny. Might be that you’re from the buckeye state. My lovely father was a buckeye from Marion, OH. He had the same attitude as you. Keep smiling and keep making others smile. It’s what we all need.

    in reply to: progression questions #82459
    shellina
    Member

    My husband has been on hospice for over 14 months. You cannot assume it will be a year or six months. But, I will tell you they are a Godsend. I have thought many times it was getting close. He keeps hanging on. Our hospice nurse tells us everybody is different and be thankful for every day.

    in reply to: My dad has Cholangiocarcinoma #81671
    shellina
    Member

    My husband is not doing treatment (no chemo, surgery, etc). He is not diabetic. However, his blood sugar is very low now. The last time he was hospitalized his glucose was down as low as 40. The doctors told us glucose levels are usually low in CC patients because of the metabolism issues CC patients face.

    in reply to: How Were You Diagnosed? #82040
    shellina
    Member

    Meant to say he is progressing

    in reply to: How Were You Diagnosed? #82039
    shellina
    Member

    My husband started with intense itching. His quack of a doctor told him to drink more water and prescribed a lotion which was $75.00 and not covered by insurance. I sent him back to his doctor and told him to tell the doctor to do blood work. The labs came back and the alkaline phosphatase was through the roof. We spent a couple of months going for various diagnostic tests (CT scan, ultrasound, etc). Finally they thought it was a stone and he needed gall bladder surgery. When we met with the surgeon he told us he couldn’t help and that he needed to see a GI for an ERCP. Before we got into see the GI, he ended up in ER with jaundice, pain and confusion. He spent 2 weeks in 2 different hospitals. He almost died. He doesn’t remember much of those 2 weeks. They put in a stent and he has an external biliary drain. I would say the drain saved his life. They tried to do brush biopsies but none came back positive. The oncologist told us this is common and he has all of the symptoms of cholangiocarcinoma. We had a few more trips to the ER due to pain. He was not a surgical candidate. He watched his dad die from pancreatic cancer and chose to not do any treatment. He has been at home followed by hospice for 14 months now. He has good days and bad days. But, because of hospice, he really doesn’t have pain. He is now progreesing and has some fluid in his lungs and not much of an appetite. But, I don’t think he regrets his decision to chose no treatment. They told him in late 2012 that he probably had 3-6 months. To date, he has lasted 17 months since diagnosis.

    in reply to: our good news are not exactly medical… #81792
    shellina
    Member

    Congrats! It is so nice to hear from you again and what wonderful news.

    in reply to: Incision infection #81413
    shellina
    Member

    Julie, my husband has issues with tape also. As Kris mentioned, ask for Sure Prep. It really helps. In addition, we only use MicroPore tape. Ever since we made these changes, we have no more skin breakdown. For those who have external biliary drains, Sure Prep also helps protect the skin around the tube where bile can came out and irritate the skin.

Viewing 15 posts - 1 through 15 (of 44 total)