Question for patients

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  • #48105
    maria
    Spectator

    For me, life is not getting through every day, it

    #48104
    kathyb
    Member

    Jtoro – sounds like you are doing the right thing with asking for guidance. You know your kids and situation better than anyone. Do your kids know what type of cancer you have?

    Margaret and Lisa – I agree with your thoughts about sharing diagnosis and prognosis. In the future, if my kids ever have to face something like this with their spouse, kids, friends or themselves, they will know first hand that the odds can be beat. Whatever happens, I have already beaten the odds.

    #48103
    lisa
    Spectator

    I agree with those other comments. This is what has gotten me through the past 3 1/2 years:
    God, prayer, church friends and family
    Focusing on the positive and choosing the positive every day.
    Allowing myself some times of feeling bad, then choosing life once again.
    Don’t think I’m dying of cancer, I am living with cancer.
    If in pain, don’t wait and let the pain get worse, take something for it right away so you can function.

    My kids (18, 22, 24) have known all along the diagnosis and prognosis. I keep them updated on every CT scan. My 18 year old daughter has choosen to fight cancer by being the Captain of a Relay for Life team.
    This gives her a concrete sense of doing something positive in the fight for a cure.

    #48102
    jtoro
    Member

    Thank to all of for your responses and encouragement.
    This week was a good week.
    Margaret- I have talked with the counselor each week about
    the kids. I am still doing all the mom
    things- making breakfast, lunches, attend all of their sports
    events. My counselor has survived cancer twice and counsels
    people specifically with cancer, so she has lots of insight.
    She feeels that there is nothing to tell the kids at this time, except that
    I have cancer and go for treatment. I have lost my hair and eat
    less, so they see that each day. She feels that since things are stable,
    there is nothing new to tell. If and when things change then
    I will need to tell them more. She feels by telling them, it serves no
    purpose, except to worry about me each minute.
    I agree and want them to live each day of their lives. We
    spend lots of time together and are very close. I pray each
    day and ask for guidance in all of this.
    Also my mom comes three days a week to help out with
    meals and just spend time with all of us. This has been
    great for all of us.
    Thank you for your support.

    #48101
    cathy_a
    Spectator

    I have cholangiocarcinoma and I prefer to respond with a positive attitude daily. Every morning when I wake up in my bed and my feet touch the floor, I know it is going to be a great day! Think positive… dont think about what you are going to miss, but think about that very minute you are living.

    This disease has given me so much (besides the obvious)… I never knew how much I am loved by friends, I am so blessed. I dont work 80 hours a week anymore, I stare at the moon at night and play in the snow during the day. I have been eating healthy & exercising daily and loving it. I will continue to fight every minute of every day and I will not let cancer win. And this is how I get through my days!! I wish you luck and please come back to this site often, it is the best thing I have found since I was diagnosed with cholangiocarcinoma.

    #48100
    mlepp0416
    Spectator

    Jtoro – I can somewhat relate but from the other side. My husband Tom has CC and was diagnosed three years ago (next month). Today he returned home from an inpatient stay in the ICU for high blood sugars. He wanted me to help him shower and while I was drying him off, applying lotion to his dry skin and helping him get dressed, he said “I’m not afraid of dying, but I’m afraid for you, for our kids and our grandkids. Little Tommy will grow up not knowing or remembering me, and it just makes me feel sad. I worry about you and how my not being here anymore will affect you.”

    I can tell you that I almost lost it in that moment as he hugged me close.

    From my perspective, (and I’m speaking from my heart here) maybe you need to start letting your children know more of the facts regarding your condition so that they can start preparing themselves. I am almost 60 years old and have know the facts since Tom’s diagnosis. Imagine how upset I would be if he’d kept the facts away from me and suddenly died. I would be very angry and upset. At ages 18 and 15, your children will be OK and would not be angry with knowing the truth. I believe that they would be angry that the truth was kept from them. They have the right to know as it WILL affect them down the road. You may want to discuss this with your counselor. If they were 3 and 8 years old, I would feel differently. Most children at age 15 and 18 are pretty self reliant…

    Just my opinoin.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    #48099
    nur1954
    Spectator

    Jtoro – Since it was my son who suffered with “CC,” I can only give you my thoughts as someone looking in…..please allow yourself to have down times. I think that is absolutely normal for anyone involved with this cancer. Learn some meditation and seek some counseling and speak with your doctor about giving you some anxiety medication, so you have it if you need it. There is nothing wrong with falling apart when you need to. Getting that out of your system can be somewhat healing. My son had several bouts of depression and sadness that only was relieved when he spoke with a “cancer” psychiatrist and he sometimes needed Atavan to relieve his anxiety. I’m not sure what we would have done without that extra help. Go easy on yourself. – Nancy

    #48098
    slittle1127
    Member

    Dear Jtoro – Our hearts go out to you, You are so young and this cancer is such a roller coaster ride of ups and downs. It is easy to worry about the future, but each day becomes more precious when you are unsure how many there are. We each respond so differently in this situation, but as you said God is becoming more important and that will bring comfort. My prayers are with you and your family. Please come here often to express whatever you are going through. Many of us have been there. Blessings, Susan

    #48097
    lainy
    Spectator

    JTORO, when you get up in the morning look in the mirror and repeat to yourself, “I will only focus on the good today”. Keep repeating it and you will be surprised how you will soon believe it. Your children sound just wonderful and maybe, just maybe by you holding back so much you are making it harder for yourself. Kids are so resilient and perhaps they need to be a real part of what you are going through. You are really using up important good energy that your body needs to keep. Teddy and I found that the more we talked about it, it never stayed couped up in our minds. I also realize people are different, just giving you some suggestions on what worked for us. And while our children are all older, the Grandkids knew everything (ages 14 – 22) and were very supportive. Good luck with everything and please keep us posted.

    #48096
    kathyb
    Member

    I was diagnosed July 09 so I have had almost a year longer than you to adjust to the cancer journey I thought I was immune to. Like you, I was always very healthy. It’s hard. Very hard. As a Christian I am not afraid of dying, but I can get very sad about the things I will probably miss. I use to go into the pit of despair, and sometimes stayed there for a day or two. Now it’s more like I only spend a few hours at a time feeling sorry for myself and not very often. God has helped me so much through all of this and hopefully I’m becoming a better person. I sure pray more than I use to. When my mind is bombarded with negative thoughts I have some verses I say to myself, even when I don’t feel like it.

    “Trust in the Lord will all thine heart; and lean not unto thine
    own understanding…” Proverbs 3:5

    “For I know the plans I have for you declares the Lord, plans to
    prosper you and not to harm you. Plans to give you hope and
    a future.” Jeremiah 29:11

    Promise me you will always remember: You are braver than you
    believe, stronger than you seem and smarter than you think.
    (Christopher Robin to Pooh)
    BY THE POWER OF GOD

    Stable is GREAT news!

    Kathy

    #4787
    jtoro
    Member

    I was diagnosed with CC in May 2010 and have been on gemzar/xeloda since then. When diagnosed the cancer had spread to my liver,
    1 spot in back, peritinium, and 3 spots in lungs. I am 49 and always very healthy
    before this. The cancer has not spread since May, but remains stable. I h

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