Shout out to Carol "Camul"

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1surfermom
1surfermom Member Posts: 396 Member

Hi Carol

Just wondering how you are doing. Post when you get a chance. Love Surf

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  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    Thinking and praying.  Please

    Thinking and praying.  Please let us know.  ((((hugs)))))

  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    Thinking and praying.  Please

    Thinking and praying.  Please let us know.  ((((hugs)))))

    Thinking about you as well, Carol ..

    do post an update when possible.

    Strength and Courage I wish and pray for you always.

    Vicki Sam

     

     

     

  • aisling8
    aisling8 Member Posts: 1,627 Member
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    VickiSam said:

    Thinking about you as well, Carol ..

    do post an update when possible.

    Strength and Courage I wish and pray for you always.

    Vicki Sam

     

     

     

    And me, too

    Hopefully you're traveling or busy with visitors. 

    xoxo

    Victoria

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    aisling8 said:

    And me, too

    Hopefully you're traveling or busy with visitors. 

    xoxo

    Victoria

    Ditto

    Let us hear from you, Carole.

    Suzanne

  • camul
    camul Member Posts: 2,537
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    I guess it has been a while.

    I tried a couple of times to post but it said I was not allowed? It looks like it is wotking again. I have been off the Femara for about 6 weeks aand muscles are hurting less. Bone pain is still not good. I am on 75mg of the Fentanyl and they want to in rease to 100. She said I may sleep more, which I dont like, I already feel like I sleep more than I am up. Back and legs are awful most of the time. Finally looks like coumaden le els are balancing again. First time this week, since starting the Fenara over 3 months ago. Have been at the new cancer center sin e Dec. Got my first bill. United Health Care has not paid anything! Called them, they said becuz it is not in network. I called UHC before going a to see if I needed to fill out gap forms to go out of network, but where they approve it as an i network provider and was told no. As a secondary insurance it was not necessary. Now they said that I have to. Bcuz they are out of net work, I have to pay first 1500. after Meddicare pays and then they will pay 10% of 60% of the balance. I laughed. I have not had one rwp give me the corect answer and have hadd to aappeal everything. They have been as frustrating as the cancer. The Huntsman center sId they will work with me. I have scans scheduled for mid April, but may have to put them on hold until this is straightened out. I stary Aromason totomorrow. I put it off a week bcuz I am still so sore from the Femara. I fell like I am living in a state of limbo. To sore to function, yet not ready to agree to hospice. The first 36 hours of the new patch I function better then the pain in my ribs back and legs kick in. Victoria, I wish I felt good enough to travel or want company. If someone wanted to go on a trip the day I change the patch I would be ready, but by the next evening I would only want to sleep! This is a.miserable ride and the pain specualist says enjoy this time, as this is as good as it will get! I am 10 hours away from a new patch, or it may be sooner.:)) Thanks for caring, you all mean so much to me. It is really hard sometimes bcuz people who have not experienced this, have no idea. The dr told me last week to have patience with those who dont understand and make dumb comments. I have hair and look healthy so people willexpect more than I can give or do. He said when you have little or no hair, people can tell something is wrong and it is almost easier. I wish I had good news for everyone. Hugs and thanks for caring. Love Carol

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    camul said:

    I guess it has been a while.

    I tried a couple of times to post but it said I was not allowed? It looks like it is wotking again. I have been off the Femara for about 6 weeks aand muscles are hurting less. Bone pain is still not good. I am on 75mg of the Fentanyl and they want to in rease to 100. She said I may sleep more, which I dont like, I already feel like I sleep more than I am up. Back and legs are awful most of the time. Finally looks like coumaden le els are balancing again. First time this week, since starting the Fenara over 3 months ago. Have been at the new cancer center sin e Dec. Got my first bill. United Health Care has not paid anything! Called them, they said becuz it is not in network. I called UHC before going a to see if I needed to fill out gap forms to go out of network, but where they approve it as an i network provider and was told no. As a secondary insurance it was not necessary. Now they said that I have to. Bcuz they are out of net work, I have to pay first 1500. after Meddicare pays and then they will pay 10% of 60% of the balance. I laughed. I have not had one rwp give me the corect answer and have hadd to aappeal everything. They have been as frustrating as the cancer. The Huntsman center sId they will work with me. I have scans scheduled for mid April, but may have to put them on hold until this is straightened out. I stary Aromason totomorrow. I put it off a week bcuz I am still so sore from the Femara. I fell like I am living in a state of limbo. To sore to function, yet not ready to agree to hospice. The first 36 hours of the new patch I function better then the pain in my ribs back and legs kick in. Victoria, I wish I felt good enough to travel or want company. If someone wanted to go on a trip the day I change the patch I would be ready, but by the next evening I would only want to sleep! This is a.miserable ride and the pain specualist says enjoy this time, as this is as good as it will get! I am 10 hours away from a new patch, or it may be sooner.:)) Thanks for caring, you all mean so much to me. It is really hard sometimes bcuz people who have not experienced this, have no idea. The dr told me last week to have patience with those who dont understand and make dumb comments. I have hair and look healthy so people willexpect more than I can give or do. He said when you have little or no hair, people can tell something is wrong and it is almost easier. I wish I had good news for everyone. Hugs and thanks for caring. Love Carol

    Carol, you are really and

    Carol, you are really and truly amazing and have given so much here.  Your posts are honest reporting of a terrible disease and I know you have suffered so much, but your spirit through it all shines so brightly.  The financial stuff always stresses the crud out of me.  It usually works out, but it is just one more thing.   I wish I could fly through cyberspace and help somehow.  I love you, sweet and brave one!  Keep fighting and pm me anytime. 

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