Update on my dear husband
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I am so sad to read this Nancy. I hope that you still have some quality time with Doug, and many more memories can be made. I am thinking and praying for you all. Hearing about the confusion makes me think of Dad – as long as he has moments when he was still with us (rather then in his “other” world), he knew who we were. That was one thing that was always clear in his mind. I hope the new medications help him, and I hope that you get some rest… it’s so important.
All my love, prayers and positive thoughts…
Jen
Hi Peony and Nancy. I just want to say that from the time Teddy had his first Whipple he kept telling me to be strong. About 4 hours before he passed last December, he called my daughter over to him, took her hand and he said, “I love you so much, Robin”. Then he turned to me and his last words to me were, “Be strong”. I would have rather heard “I love you” but he knew I knew that and wanted to stress to me that being strong was the most important thing to him. And being strong got me through everything. Oh, I have my little moments but they are short and I try to concentrate on all the good things we had, did and enjoyed. You girls are doing just fine and you know you are not alone here.
Dear Nancy,
To make the choice of continuing treatment or choosing palliative care has to be one of the most difficult decisions we face. I know Dan and I have discussed stopping chemo several times because it has been very rough for him.
I believe you and I started this journey together and our husbands situations were very similar (stage IV inoperable) so we have probably experienced the same roller coaster ride. I want you to know that I’m with you in spirit and feeling your heartbreak. I’m sending hugs, and strength and prayers your way.
Stay strong Nancy. And as Lainy so beautifully put it keep telling Doug you’ll be OK.
I think that is what they worry about the most – our incredible men.Dear Nancy,
I so wish that there was something that I could say that would help right now. But please know that I am thinking of you and Doug right now. You are doing everything that you possibly can right now for Doug. Please try to stay strong and remember that we are all here for you. Thinking of you both.
Hugs,
Gavin
Dearest Nancy and Doug. I can’t help but have my own tears for you. I remember it all so vividly. The only advise I can offer you is to use this time as if you were newlyweds, making loving and lasting memories. Teddy used to tell everyone we were on our honeymoon and that is what I hang on to even now.
Nancy, overflowing with love but heart breaking is really describing the feeling.
This is when you have to be your strongest to get Doug through his journey, I say that to you as I know you can do it. If you ever want to talk please don’t hesitate to e mail me for my phone number. I am sending a ton of love and hugs to you both, and when the time comes that you and Doug are discussing things please remember 2 things. Keep telling Doug that you are going to be OK and also tell him he is not going to be alone, I know one crazy Sicilian that will be waiting to meet him. As you know none of us know when, I’m just saying!Hello everyone, Again thank-you for your much needed support and prayers. Doug’s scan did not show any visible change to the tumours in the liver but showed many new bone mets. There was no signs of blockage but the doctor said it does not always show up on a CT, so did not necessarily rule it out. We have been able to keep the nausea under control and he is eating and enjoying food much more now. His general health is declining though. He is now suffering from hepatic encephalopathy and is very restless and confused. He does know everyone though and I can still get him to laugh. Neither of us have had much sleep the last few days because he is more restless at night. We have been giving him lactulose which is giving him the runs but not helping with the encephalopathy. The doctor has given him a new prescription which we hope will help. They didn’t have it in our small town but the drug store is getting it in today.
I went to the oncologist appointment by myself on Tuesday because Doug was not up to going. My daughter Tamia stayed with her dad. We discussed thoroughly all the options and it came down to a decision of treating Doug aggressively or with palliative care. We have chosen palliative care. Doug’s liver is in end stage and has extensive cirrhosis. I can not see putting him through chemo at this time. We are looking into whether it would be beneficial to do more radiation on some of the bone mets.
We had a good run at this disease and where able to kick it to the curb for awhile and enjoy quality time. We’re hanging in there and taking one day at a time. My heart is overflowing with love and breaking at the same time. Somehow we will make it through. NancyNancy and Doug: Our thoughts and prayers are with you both. I’m hoping that this is just a little bump in the road and they figure it out fast. My Tom has certainly had his bumps along the way and each time I prepare for the end and his docs are able to quickly figure out what the problem is. If there is no blockage, then for some reason his body is not getting rid of the bile, hence he is turning yellow. My tom has the external drain bag because they could not get a stent internalized past the tumor.
Go with God and KEEP KICKIN’ THAT cancer Doug!
HUGS
Margaret and Tom (The pair of Timex Watches. We take a lickin and keep on tickin)
Nancy, I was so sorry to read about the rapid onset of jaundice and pain. CC is so variable that it is difficult to even begin to guess what is wrong. I wish you would have received the results right away so that you would know in what direction you and your husband would be going. Bony mets are painful at times and not at others. I have mets to both hips but the left hip does not hurt at all while the other still hurts after treatment and surgery. I will be praying for you both during your visit tomorrow to the doctor. There is so much to be thankful for at times when you have been able to share positive family times together for extended periods. I pray you have more of those times.
Love, CharleaHi Nancy,
I just read this right now, and want you to know I am thinking about you and your family. I am with everyone else when I say that I hope it’s nothing more then a blockage, and he feels better soon. Will be praying for you tomorrow when you get the results…Jen
Hi Nancy,
Really glad to hear that the nausea and the jaundice have subsided and I hope that the pain killers work for Doug’s back and legs. I went through quite a few of these hot seat meetings with my dad and can so relate to how you are feeling right now. Sending tons of positive thoughts your way for Tuesday.
Best wishes to you and Doug,
Gavin
Nancy….the good news is for the nausea and quick onset of jaundice has subsided. Our JeffG had significant problems with bone mets and I am including the link to one of his numerous postings with the hope that it may be of help to you.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1694
Know that we are joining you and Doug in the hot seat and that tons of good wishes are coming your way.
MarionNancy, you are so right in calling the session Tuesday the hot seat. I know what you mean in saying you love Doug so much. It is like an over whelming love that cannot be described. I feel it to this very day and it seems to get stronger all the time. You’re very lucky to know this kind of love and I can tell you honestly that it is this kind of love that will get you through anything. Anxiously waiting for Tuesday right with you!
Thank you all for your prayers, kind words and support. Doug got his CT scan yesterday of abdomen and skeletal. He also had a chest xray. We go back on Tuesday to sit in the hot seat and get the results.
Doug has yet to have a stent inserted. Miraculously so far, even though the cancer is extensive throughout his liver, he has had no blockage. They are checking for one now.
Doug, thankfully, hasn’t gotten sick since Thursday and the yellowing seems to have subsided. The pain in his back and legs have increased though, making it very difficult for him to get around. He started back on pain killers yesterday after being “pain killer free” for 2 months. He had radiation last fall on the worst section of bone mets in his spine. It is possible we may be looking at radiating further areas to relieve the pain.
He continues to be so stoic and brave. I love him so. Nancy
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