deizeldoo

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  • in reply to: Hi! #95428
    deizeldoo
    Spectator

    Dear Pat (hercules) Thank you for the welcoming message you sent pertaining to my joining this astoundingly helpful discussion group.Also, gratitude for your feelings of empathy towards myself and my late wife. the last few months have been challenging and probably the most severe test of my character and spirit I have ever experienced in my life, and at 63 years old I have seen much and experienced a variety of emotions both depressing and joyful.

    Silent….While my wife’s cancer odyssey took a different track than your husbands,( She got sick in early June, and passed away July 26, 2017), she did display some of the same behaviours…she would stay in bed all day..only arising to use the washroom…or go out and smoke.23 hours a day spent lying down, addicted to watching YouTube.The months leading up to the presentation of the jaundiced condition..her temper with me was short, and unpredictable.it was akin to lighting the fuse on a bomb and watching and waiting for it to explode ,and when the predicted explosion didn’t go off..you felt safe to approach,only to be dealt a verbal assault of anger,blame ,and irrational statements.As caregivers we are at a major disadvantage in a very important area…we are not them, we do not reside in their skin, and try as one does..it is impossible for us to feel their fears and pain, their possible regrets and loneliness.I myself was fortunate in that I am a fairly patient person, however, as the main caregiver you can only do so much and go so far in this journey with your loved one.As human beings..we are all singularly different from one another.My wife displayed certain tendencies, as your husband is displaying different ones.I can remember as recently as early June…she had bought me 2 new shirts in a store we visit frequently…I was in that store just the other day, looking at exactly the spot she stood when she had shown them to me, it seemed like it had taken place in another life.You remember your husband in a happier time before this disease manifested itself, and wonder..what happened here????Your journey is unique..and incredibly confusing, and hopefully may never happen again in your life..but you are handling it as well as I did, and you will learn as you go.You are very strong and care for your husband…that comes thru in your postings..he is very fortunate to have a lifemate such as yourself.I wish your husband well, and I wish you well also…we are like soldiers in a battle….we joined this war not knowing what the outcome would be, but we are brave enough to march right thru to the end with our wounds bleeding and uniforms torn and dirty…but we will make it…because we are surviviors!Take care of yourself.

    in reply to: Hi! #95427
    deizeldoo
    Spectator

    Dear Catherine(middlesister1)

    Thank you so much for the sincere condolences on your part, it is appreciated.Yes…it is a lousy disease, it snuck up on us in the most insidious manner possible…silently, most of the time Cholangiocarcinoma does not present overt symptoms.Usually manifests itself initially with jaundice, as it did with my wife..she was a nurse for 40 years..she knew everything that was going to take place in the hospital and the medical procedures before and during this Hellish life experience.I have read quite a bit about CF, and have registered to volunteer my time and experience to those that need a helping hand and a shoulder to lean on.I am coping the best I can, under the circumstances, however helping others in the same situation I was in from June onward till today is probably one of the best therapies I know of to help alleviate the grief.Thanks for your caring post, Catherine.
    Rod

    in reply to: Hi! #95420
    deizeldoo
    Spectator

    Hi SilentK,

    Just joined the discussion group today and happened upon your postings as the first I read.I am so sorry to hear about your husband’s metastatic cholangiocarcinoma.My wife contracted this form of bile duct cancer in early June of this year,it had spread too far at the time she was diagnosed, and she passed away near the end of July.The feelings you are experiencing are like nothing else you have ever felt,it is both overwhelming and unimaginable at times..I know for myself it was like I was in a dream and almost was wanting to pinch myself to get myself to awaken.I’m not going to get into the medical aspect of the whole ordeal, I’m sure you have heard enough medical jargon to last you a lifetime,even though i know quite a bit in that area,I think it is more important to dwell on the real issue…the human cost and suffering,not only of the patient,but also of the caregiver and their families.
    The role of caregiver is not something we look to do,or even know how to carry out,it is thrust upon us with brutal reality…some of us are not prepared for this role..while for others it is a must…you may be the only other person close enough to the patient to attempt to carry it to fruition.You seem to be doing your best ,you have family , and friends to lean on, and a professional team that is doing their best.One thing I can tell you…don’t be too hard on yourself,take time for yourself,lean on other people if need be.The one attribute I found out about myself at the beginning,during the process,and at the end…was how strong I was…this really tests you.
    SilentK… you are going thru it,you logically and honestly know what the end result will be…and being his wife and love of his life,and life partner you would not want to be anywhere else except where you are by his side,SilentK,from reading your posts…your instinct and courage is second to none..you should be proud of the way you have conducted yourself.After my wife passed away I had very littlke regret as to what I had done as her caregiver..I did the best I could under the circumstances…that is what you are doing…one day in the future you will look back on this and wonder how you ever got thru it…but you will…you are already doing it.Take care and I hope for all the best for you and your husband and your family.

    in reply to: Introduction / Welcome #83909
    deizeldoo
    Spectator

    Hello all, nice to be here in the discussion room.My name is Rod and I am new here….user name is Deizeldoo.I arrived at this site because my wife had Cholangiocarcinoma-Bile Duct cancer.She presented a jaundiced condition in June, was diagnosed with extrahepatic bile duct cancer after ultrasounds, CAT scans, blood tests, eventually had 2 ERCP’s performed with stent insertion.Since this condition does not express any signifigant symptons till it is well advanced, there was nothing they could do for her.She died after a short bout with this cancer, there did not seem to be any signifigant amount of suffering on her part, however, it was uncomfortable for her.After being referred to a liver specialist in another larger city, she died 6 days later on July 26, 2017.Barb would have been 67 this December.The surgeons indicated to me that this is still a very rare sort of liver disease, but it is a growing aspect of liver cancers.I went thru a lot of experiences while going thru this terrifying event, losing ones spouse is incredibly difficult and life changing.Anything I can do or help anyone with as far as dealing with this experience..you have my empathy and sympathy.Please don’t hesitate to reach out if you need to just talk…I have been there..I wish all family members, friends and especially spouses best wishes and support in your time of need.Hope to be getting to know some of you soon.

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