Feeling so alone

citygirl1107
citygirl1107 Member Posts: 4
in Liver Cancer #1

Hello everyone,  This is my first post since joining recently.  I never knew anyone with cancer and

had no idea how scarey it is until this past July when my husband was diagnosed with neuroendocrine cancer.  It's a rare form of cancer that is treated experimentally.  It took a while for the doctors to decide on a form of

"treatment".  It's mainly a way to control his symptoms which, thank God, does not include pain so far.  I had no idea how freightening it is to hear the words Cancer and Terminal and We just don't know enough about it to treat it.  It was discovered it spread to his liver and is stage 4.

I honestly thought that once I told my family we'd have a lot of support.  His family is there, but they live far from us, different parts of the country.  My family on the other hand live very close to us.  Pretty much what it came down to is nobody even asked how we were handling things.  Well, it's been so hard on my daughters and me.  We have each other to talk to but when we're all going through the same pain you just wish that there would be someone to pick up the phone and ask if there was anything they could do.  And all we need is for someone to show that they care, or come by and just talk about anything, even to get your mind off of things.  Has anyone found themselves in that position?  I find myself getting angry and hurt on top of having to deal with the roller coaster of emotions from just having to deal with the cancer.  One day we spent 13 hours out of the house and most of the time we were at the hospital going for his tests and consultations and treatments. 2 hours was spent traveling to and from the hospital.  I wished that when I got home someone would have called and told us to not loose heart.  I feel like I'm feeling sorry for myself (and my husband and kids) but what do I do with all this emotion?  Take a walk?  Meditate?  Nothing seems to be working.  Thank you for listening. And I pray you all have a good week.

 

 

 

 

 

 

 

 

 

 

Comments

  • SDickerson
    SDickerson Member Posts: 44
    #2
    Cancer is a scary thing and

    Cancer is a scary thing and people just don't know what to say or do. We never really understand something until we experience it ourself.

     

    Continue to pray as God has all the answers..

     

    Praying for you and your family,

    Shannon

  • suzanne-yes
    suzanne-yes Member Posts: 24
    #3
    You Are Not Alone!

    Even though it may feel that way.  Sometimes people need to be reminded that as their world goes on as normal  - that yours has come to a standstill...and that you can use some help.  I found that early in my diagnosis people were ready to take the kids to school, bring by a meal, and go to treatment with me. As time passed and cancer lingered, it became more of a routine of treatment and living.  We haven't needed as much help.  Try to find a support group near you and help from those who have been where you are now. 

    If someone asks how they can help, let them know specifics  - mowing the yard, grabbing a few groceries, bring over a meal.  Sometimes others are scared or complacent.  Good luck....I will be thinking of you.

    Suzanne

  • citygirl1107
    citygirl1107 Member Posts: 4
    #4
    SDickerson said:

    Cancer is a scary thing and

    Cancer is a scary thing and people just don't know what to say or do. We never really understand something until we experience it ourself.

     

    Continue to pray as God has all the answers..

     

    Praying for you and your family,

    Shannon

    Hello Shannon, Thank you for

    Hello Shannon, Thank you for getting back to me.  You're right, people really don't know what to say or how to act in a time like this.  I guess I need to give people grace wheather or not they understand.  Keeping my eyes on God and knowing He's going to be there to see us through is the  more important thing.  Thank you for being there.  God bless you.

    Angela

  • citygirl1107
    citygirl1107 Member Posts: 4
    #5
    suzanne-yes said:

    You Are Not Alone!

    Even though it may feel that way.  Sometimes people need to be reminded that as their world goes on as normal  - that yours has come to a standstill...and that you can use some help.  I found that early in my diagnosis people were ready to take the kids to school, bring by a meal, and go to treatment with me. As time passed and cancer lingered, it became more of a routine of treatment and living.  We haven't needed as much help.  Try to find a support group near you and help from those who have been where you are now. 

    If someone asks how they can help, let them know specifics  - mowing the yard, grabbing a few groceries, bring over a meal.  Sometimes others are scared or complacent.  Good luck....I will be thinking of you.

    Suzanne

    Hello Suzanne, Thanks for

    Hello Suzanne, Thanks for your words of encouragement.  I'm glad you had people for you through the hard times.  Not long after I wrote in my brother called and offered to help in any way he could.  That made me feel that God is meeting my need.  And blessing me with your kind words also.  I hope you're doing well and I'll keep you in my prayers.  God bless you and Marry Christmas.

     

    Merry Cristmas to all who wrote to me and all of you who are in CSN!

    Angela

  • northa914
    northa914 Member Posts: 100
    #6
    Hi citygirl1107

    I'm so sorry to hear about your husband's diagnosis, and that you don't seem to have support around you.  I too was diagnosed with stage IV neuroendocrine carcinound tumor (pNET since it's of panceratic origin, the same thing that Steve Jobs had).  To make along story short, I was initially diagnosed with stage IV cholangiocarcinoma in June 2010, and rediagnosed with stage IV pNET in January 2013.  I was and am so thankful that my friends and family have always been there for me.  It's so important that all of you have people around you that care.  Not only do you need to have confidence in your husband's medical team, you need to know that you have a cheering section there for your husband, you, and your children.  My diagnosis brought us all closer, and I've truly been blessed to have them in my life.  Something about this site: you'll find a lot of supportive people here, another family of sorts.  Is your husband seeing a apecialist for neuroendocrine cancer?  I live in Southern California, and see Dr. Edward Wolin at Cedars Sinai in West Los Angeles.  If you look on the carcinoid.org site, you can access a list of specialsts by state.  Dr. Wolin is into clinical trials as well.  Unfortunately for me, I'm ineligible for most of them since I've had so many different types of chemo.  Though it was for a diseasae other than pNET, I'm still excluded.

    Please let me know how you're doing.  If there's any help I can give, I'm more than happy to do my best.  If you'd like my email address, please send me a private message via this site.  Take care, and keep your chin up!

    Andrea 

     

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