Out of options

LindaK.
LindaK. Member Posts: 506 Member

This has been a hard week.  I brought my husband into the ED last Thursday because of vomiting, thinking he had another obstruction.  CT scan that night showed lymph node tumor pressing on duodenum not allowing anything to pass from stomach so it was an obstruction, but from the outside of gi tract.  Nasty NG tube needed to decompress belly.  Monday afternoon his onc gave us 'the talk' about aggressive tumors still growing even after Vectibix treatment the previous week.  There is no more chemo that will help him.  He has weeks to months left, which makes me cry every time I say it or type it.  They successfully placed a stent in his bile duct while hospitalized earlier this month and yesterday successfully placed a stent in his duodenum and removed the ng tube so he can get some nutrition.  I've read.average life expectancy after successful stent is 3 months.  Dr told us weeks because at that time we weren't sure if stent culd be placed at all or if he would have to have a g tube put in.

So, today he is on clear liquids as we attempt to get his affairs in order.  They had upped his dilauded pump and now he's pretty gooned.  Waiting fir them to turn it off for a while or reduce it so we can make some decisions.  Pain and palliative care group here is excellent.  They are having the home hospice people come talk to us sometime soon.  It's all happening so fast, much faster than we thought.

I am taking a FMLA leave from work which will hopefully let me spend all my time with him and protects my job which I will need when this nightmare ends.  My best friend drove 12 hours to stay with me and get my house in order for his release possibly in a few days.  We also have many famiky members and friends offering to do anything.  I don't even know what I need. But I do have some Ativan and xanex for myself which is helping me sleep.  We need to get him tolerating food and pain under control orally before we can take him home.

I know so many of you kind folks have been through this and I admire you all.  Right now we are both scared of the unknown.  My biggest heartache lies with our two grandsons who adore him and have been lucky enough to spend lots of time with him throughout their childhood.

Keep us in your prayers as we go through this most difficult time, thanks

Linda

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Linda

    I am so very sorry to hear this news.

    While I have been the cancer patient myself, I was also the caregiver to my sister who died last year from cancer, so I understand exactly where you are in this journey.

    It sounds as if you have lots of support and are getting the right agencies to help with home care.

    My prayers for you all, that your dear husband can be made comfortable both physically and emotionally and that you take care of yourself as well.

    Hugs,

    Marie who loves kitties

     

  • Phil64
    Phil64 Member Posts: 838
    You are in my prayers. Keep

    You are in my prayers. Keep the faith. And remember that it's not all about our time on this earth. There is a plan even when we can't understand it. Just as sure as there is a sun even though some days we don't see it.

    Love, light, hugs to you and your husband.

    Philip

  • annalexandria
    annalexandria Member Posts: 2,571
    I'm so sorry, Linda.

    I've been thinking of you guys, and wondering how things were. It breaks my heart to read that you and your husband are at this stage of the journey.

    Like Marie, my sister also died from cancer, and spent the end of her life in hospice.  They really do a wonderful job in what is just a terrible situation for all involved.  I hope that they are able to support you and help you through this.  And I'm glad you have others around who will help as well.  It's just so hard.

    Please take care of yourself too, as best you can.  I've often said that I think this whole experience is harder on the caregivers at times than it is on us patients.

    Many hugs, AA

  • Nana b
    Nana b Member Posts: 3,030

    I'm so sorry, Linda.

    I've been thinking of you guys, and wondering how things were. It breaks my heart to read that you and your husband are at this stage of the journey.

    Like Marie, my sister also died from cancer, and spent the end of her life in hospice.  They really do a wonderful job in what is just a terrible situation for all involved.  I hope that they are able to support you and help you through this.  And I'm glad you have others around who will help as well.  It's just so hard.

    Please take care of yourself too, as best you can.  I've often said that I think this whole experience is harder on the caregivers at times than it is on us patients.

    Many hugs, AA

    So sorry for the news that

    So sorry for the news that you had to share.  Cancer is just so awful, I am also getting to the end of the treatments availalbe so i have gone off of cemo since June  I get a scan next Friday, hoepfully they will say no chnage or for the better but I am in the process of enrolling in the Gerson Therapy.  The end on chemo is so hard to imagine.  I think I would rather go, with some of myself intact.  

     

    Hang in there, stay strong, it's all we can do, other than pray for less pain and peace.  A miracle would be nice.. .

  • Cathleen Mary
    Cathleen Mary Member Posts: 827
    Nana b said:

    So sorry for the news that

    So sorry for the news that you had to share.  Cancer is just so awful, I am also getting to the end of the treatments availalbe so i have gone off of cemo since June  I get a scan next Friday, hoepfully they will say no chnage or for the better but I am in the process of enrolling in the Gerson Therapy.  The end on chemo is so hard to imagine.  I think I would rather go, with some of myself intact.  

     

    Hang in there, stay strong, it's all we can do, other than pray for less pain and peace.  A miracle would be nice.. .

    Oh, Linda, I am so sorry that

    Oh, Linda, I am so sorry that you and your husband are in this difficult place. I pray that you will have more time with him than you now imagine and that the time will be filled with peace and comfort.

    Please be gentle with yourself.  

    Hugs,

    CM

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    hi linda

    i'm so sorry...iworry about this myself as well as i've exhausted many of the mainstream medicines we rely on.  scary is the absolute feeling alright....sraight to the bone. 

    i wanted to give you some info on fmla.....

    usually good for 26 weeks ofvprotected job protection. this is on a rolling calendar dchedule so get with hr.  be careful once gone for year its gone. at that point company could reassign you to another job position if they need to or want to.

    so while you want to all the time with him, things could go longer than predicted and you could be out of time......so just be careful and prudent.  hopefully your co will work with you.

    also keep in mind that fmlam is NOT paid time off thiugh you may use vacation or sick to help.

    wish i could help more...

    nice to see you wish circumstances were bétter but thinking of you both.

    craig

  • Yolllmbs
    Yolllmbs Member Posts: 360
    Sundanceh said:

    hi linda

    i'm so sorry...iworry about this myself as well as i've exhausted many of the mainstream medicines we rely on.  scary is the absolute feeling alright....sraight to the bone. 

    i wanted to give you some info on fmla.....

    usually good for 26 weeks ofvprotected job protection. this is on a rolling calendar dchedule so get with hr.  be careful once gone for year its gone. at that point company could reassign you to another job position if they need to or want to.

    so while you want to all the time with him, things could go longer than predicted and you could be out of time......so just be careful and prudent.  hopefully your co will work with you.

    also keep in mind that fmlam is NOT paid time off thiugh you may use vacation or sick to help.

    wish i could help more...

    nice to see you wish circumstances were bétter but thinking of you both.

    craig

    Linda

    I am so sorry. Many many cyber hugs and prayers. i, too have taken care of loved ones through the hospice program. They are awesome. Somehow, they know before us what we need. Try to depend on your support group to do the things they can so you can spend more time with your honey. Prayers and good thoughts for your family. 

    Yolanda

  • janderson1964
    janderson1964 Member Posts: 2,215
    I sm so sorry to hear this

    I sm so sorry to hear this Linda. My heart aches for you and your whole family and I pray that you will all find some peace.

  • Easyflip
    Easyflip Member Posts: 588
    I'm so sorry

    It sounds like he had a great life and he's leaving a little bit of himself in everyone that he's touched, especially those two grandsons . Take care

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Linda

    Linda,

    Indeed you are at a difficult part of this journey.  Wonderful that you are taking time off work.  Time is the most precious thing right now and spending this time with your husband will mean so much to both of you. 

    So good that you have support.

    Sending you prayers for peace for both of you and no pain for your dear husband.

    Aloha,

    Kathleen

  • danker
    danker Member Posts: 1,276
    sorry

    I'M SO SORRY THE END SEEMS SO NEAR.  WHEN IT COMES THEIR TROUBLES WILL BE OVER. 

     

    BEST REGARDS

     

    DANKER

  • LivinginNH
    LivinginNH Member Posts: 1,456
     
    Hi Linda,
    How are you doing

     

    Hi Linda,

    How are you doing dear?  Is your hubby back at home yet?  I hope that they've been able to get his pain under control.  :(   Please feel free to send me a PM if you need anything...

    Thinking of you,

    Cynthia

  • Helen321
    Helen321 Member Posts: 1,434 Member
    So sorry Linda, you guys were

    So sorry Linda, you guys were diagnosed after me.  There is just no rhyme or reason to any of this.  You are in my prayers.  

  • LindaK.
    LindaK. Member Posts: 506 Member

     
    Hi Linda,
    How are you doing

     

    Hi Linda,

    How are you doing dear?  Is your hubby back at home yet?  I hope that they've been able to get his pain under control.  :(   Please feel free to send me a PM if you need anything...

    Thinking of you,

    Cynthia

    Home hospice

    Hoping to get home later today, so overwhelming and so much to deal with.  I feel very helpless. And scared.  And wish I was stronger.  Everyone keeps asking me what I need and I have no idea.  I just want him to be comfortable.  Thanks for the kind words.

    Linda

  • here4lfe
    here4lfe Member Posts: 306 Member
    Sorry to hear

    You are at this stage. The doctors can give you a time but it's a guess. Hospice does a good job, and you are getting your affairs in order. You are doing a great job doing everything you can for your husband. He is relying on you now to make good decisions for him. Stay strong and know that you are his angel.

    Best,

    Mark