Introduction

Discussion Board Forums Introductions! Introduction

Viewing 15 posts - 1 through 15 (of 81 total)
  • Author
    Posts
  • #81903
    mbachini
    Moderator

    Dear Olga,
    I am so sorry for your loss of Norbert. I will be praying for strength, comfort and peace for you and your family. I will also keep your sis in law in my prayers…..hugs and prayers to you.
    Melinda

    #81902
    gavin
    Moderator

    Dear Olga,

    I am so very sorry indeed to hear of the passing of your dearest Norbert. Please accept my sincere condolences. I so wish that there were words that I could say that would help right now with the pain that you feel. Please know that we are all here for you and my thoughts are with you and your family right now.

    Hugs,

    Gavin

    #81901
    lainy
    Member

    Dear Olga, I am so very sorry that Norbert could not make the trip he was looking forward to. You both fought a valiant battle with grace and dignity and he was a wonderful man to have a Sister-in-law write such beautiful words about him. Olga you are a Super Woman giving of yourself where ever it is needed! Please keep us updated on Angeles and know that we are with you in spirit as you take this unwanted journey, yet again. The following is from Norbert to you:

    If I should be the first to go,
    And leave you alone, my Dear,
    Let not your heart be lonely,
    Nor in your eyes a tear.
    Grieve not for me, my Darling,
    I’ll not be far away,
    With petals of love and tenderness,
    I’ll pave for you the way.
    To join me in our sanctuary,
    And ne’er again we’ll part.
    Grieve not for me, my Darling,
    I live within your heart.
    Take joy again in living,
    As you did in years gone by;
    God knows what of he’s doing,
    And not be questioned why.
    Grieve not for me, my Darling,
    My life with you on earth
    Each moment filled with happiness,
    And love so few be worth.
    I’ll be waiting for you Sweetheart
    Where skys are ever blue,
    With eager heart and open arms
    Patiently, for you.
    Grieve not for me, my Darling,
    May faith and my love keep.
    Your soul filled with contentment
    Eternally, I sleep.

    #81900
    darla
    Participant

    Dear Olga,

    I am so sorry to hear that Norbert has passed away. Your sister’s post on Facebook was a lovely tribute to him. I am sure he was loved and will be missed by many.

    I know that nothing can ease your pain and sadness at this time, but try to take some comfort in knowing that at least for him he is no longer suffering or in pain. He will always be with you in your heart and memories of better times.

    Your support and dedication to your brother and sister-in-law is to be commended. You are a very loving and caring person to be able to do this even as you grieve your loss.

    Take care and know that we are all here for you.

    Love & Hugs,
    Darla

    #81899
    sadwife
    Member

    I have to thank everyone here on this site from the bottom of my heart, because if it weren’t for the words of support and prayers as well as all of the family support, I don’t know how I would have gotten through it.
    Update on Norbert:
    No words can describe the immense grief, sadness and loneliness that I feel in having to tell people that Norbert passed away on Sept 26. I set up a fund in memory of Norbert to support my sister-in-law for her ongoing battle against this horrific cancer. I will continue to fund raise for her until she passes. And then I will turn my efforts to the Cholangiocarcinoma Foundation.

    I’d like to share what was written by my sister on my facebook page the day before I buried him:

    Tomorrow morning, after 21 years of marriage, and having raised 3 boys, a stepson and a stepdaughter, my sister Olga will lay her beloved husband, Norbert Wierszewski, to rest. He was struck quickly and devastatingly with a cancer that took over his body with a merciless force, but which did not, could not, take over his spirit. In his final months I watched as his family and loved ones rallied around him continuously, determined to slow the fleeting days by infusing them with loving memories. It didn’t work; the time flew by, and he was gone so quick.
    I learned something that I didn’t know a few months ago… it’s at these times that we brace ourselves for loss, by filling our hearts with gratitude for the days we have left to share. And I’m grateful for that.
    We’ll miss you Norbert. Rest in peace, and thanks for the memories.

    I go on with the support of a wonderful family, mine and his, both. I move forward by doing everything I can for my brother and his wife.

    Update on Angeles:
    She went to 3 facilities here in Michigan and flew out to MD Anderson this week. All 4 places gave her the exact same treatment options, systemic chemo, gem/Cis. She flew back yesterday and went directly from the airport to the hospital. She was in pain and nauseated with vomiting. After a scan confirmed that the tumor has enlarged and may be invading the stent, they admitted her for the weekend. I told my brother to take a week off of work so that I can take them on a week trip wherever they want before starting chemo. I will take to my grave the regret that I was never able to take my beloved Norbert on the trip that he wanted to take. I don’t want my brother having the same regrets.

    Olga

    #81898
    lainy
    Member

    Dearest Olga, you did just wonderful with Angeles, I doubt anyone could have done it better. I especially love how you tried to gently push them into a 2nd opinion. You know how we love those other opinions.
    Glad to hear Norbert is status quo and I believe he wanted to go to the Lake so bad he will make it through. We did the same thing. Crossing everything I own for you to have a peaceful time at the Lake. Good work on all counts.

    #81897
    darla
    Participant

    Olga,

    I’m glad you two are getting away for a few days. Hoping for a calm and peaceful time for you with no issues. Enjoy your time together. You are dealing with so much right now that I think one moment at a time is in order. Savor those moments.

    Thinking of you both and wishing you all the best.

    Love & Hugs,
    Darla

    #81896
    sadwife
    Member

    Update on Angeles:
    Well, its been a week since I went to the meeting with my brother and sister in law. I was shaking inside through the entire meeting and it took everything in me to keep my composure and not fall apart. She has intrahepatic CC with the 7 cm x 7 cm tumor located in her liver making her ineligible for anything except systemic chemo. She has mets to the head of the pancreas and spots on the lungs. Unlike Norbert, they didn’t ask about a time frame. I think they were afraid of asking even though the doctors said enough that reading between the lines should have given them answers that they didn’t want to hear. She ended up getting an infection from blood transfusions when she was in the hospital and had a stent placed because of blockage. She can’t start chemo until she’s done with the antibiotics which is not until Sept 22. I advised her to get other opinions and gave her the numbers to Barnes Jewish Hospital, Sloan Kettering, MD Anderson and UCLA. All of which I have heard about here in this wonderful forum. If anyone has any other suggestions, I will gladly pass along. Last I heard was that they were waiting for an appt at MD Anderson. Hoping that they get an appt soon.

    Update on Norbert:
    When it was determined that Norbert needed to go home on a hospice program, I was torn. After the first stroke, Norbert didn’t want to be home. He’s never been a homebody. He wanted to be at a home that we are renting for a wrecking job that we recently landed. The home is on the lake and very peaceful. At home, I have much support including my next door neighbor who is a hospice doc, who when he found out about Norbert’s diagnosis was coming over every day to check up on him. I spoke to the kids about it and after asking Norbert directly, he said he wanted to go to the lake house. Since we’ve been there we’ve had just as many rough days as we have good days. I can’t go to my yoga anymore and that’s taking a toll on my back. I just downloaded an audio version of my yoga and just started doing it at home while Norbert sleeps. Since we were hoping to have his nausea under control we decided to do a long weekend road trip to Northern Michigan, which is beautiful this time of year. We’re in the rented RV now and he’s doing well so far. Hoping to make it to the UP without issues.
    One Day at a Time…….One Moment at a Time.
    Olga

    #81895
    lainy
    Member

    Olga, I just sent the list. Let me know if you do not receive it.

    #81894
    dukenukem
    Member

    Olga
    I’m glad that what was in my mind made it to the paper. Sometimes it takes a wrong turn.

    Here is a link (copy and paste into your browser) to something (Questions to Ask your Doctor) from the American Cancer Society that might help your brother and Angeles. You’ve been down this road but it might help them focus a little and give the meeting some structure.

    http://www.cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf

    I’d also have them ask what the onc’s experience (and that of the entire staff) is with treating cholangiocarcinoma. And as you’ve read over and over, have them get a second opinion, especially if the onc’s answers seem a little light.

    They may hear “everyone is different” “won’t know for sure until we do more tests”. Make sure they keep after the onc to get better answers as treatment progresses.

    Try to persuade them to actively participate in these Boards. Use the Search function. Get familiar with all the different Boards. There’s a wealth of information here waiting to be used.

    Duke

    #81893
    sadwife
    Member

    Thanks, Lainy
    I believe I received similar info from hospice already, but please feel free to send it to my personal email: yogi1164@gmail.com
    Thanks again,
    Olga

    #81892
    lainy
    Member

    Olga, you are one very strong and loving woman! To go to the meeting for Angeles while caring for Norbert is beyond words, and it is true that another setoff ears should always go to Doctor meetings.
    Olga, this may be touchy as I don’t know how far Norbert is on his journey, only what you say on here but I do have a list of 10 signs to watch for when the end of the journey is near. If you want the list, send me an email and I will send them to you. lainysardina@gmail.com. Stay strong, you are truly very special.

    #81891
    sadwife
    Member

    Thanks Duke,
    That helps clarify. I believe what I did was the patient registry. I definitely want to look into doing the other one. Right now, I’ve been spending much of the time while Norbert sleeps, reviewing the posts to look for information that I read here before on Dr’s and facilities that could possibly help Angeles. Her meeting with the Dr’s is Friday and they have asked me to attend. I know they are both feeling like deer in the headlights right now, so I advised them to have family members in the meeting that will be thinking more clearly than they are now.
    Thanks for all the encouraging words.
    They are greatly appreciated.
    One Day at a Time, is quickly becoming One Moment at a Time.
    Olga

    #81890
    cazgirl71
    Member

    Duke,

    My husband graduated from SUNY Oswego in 1972, where winter was always a challenge, and growing up in Liverpool, Heids was his favorite.

    I am currently working with the Mayo Clinic research group and our sons are participating in the genetic study group. Results will be shared with us, as research progresses.

    Our family mantra is “advocate to eradicate”.
    Cazgirl71

    #81889
    marions
    Moderator

    Duke…ditto on Lainy’s comments. You address issues with sensibility, caring, and insight.
    Hugs,
    Marion

Viewing 15 posts - 1 through 15 (of 81 total)
  • You must be logged in to reply to this topic.
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation