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LindaK.
Posts: 490
Joined: Apr 2013

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

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

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's picture
Phil64
Posts: 835
Joined: Apr 2012

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's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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's picture
Nana b
Posts: 3045
Joined: May 2009

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
Posts: 827
Joined: May 2011

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's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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's picture
Yolllmbs
Posts: 361
Joined: May 2014

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
Posts: 2215
Joined: Oct 2011

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's picture
Easyflip
Posts: 588
Joined: May 2013

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's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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
Posts: 1188
Joined: Apr 2012

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

 

BEST REGARDS

 

DANKER

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

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

LindaK.
Posts: 490
Joined: Apr 2013

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

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

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.  

here4lfe
Posts: 306
Joined: Jan 2010

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

 

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