How fast it all changed.

[Earstou]

I've been following along, too, and have been thinking and praying for all of you. Hoping your dh gains strength and is able to get treatment.
We, too are on a similar journey with cancer. We've been on this wild roller coaster for about a year now. I often have no words.
One of the first things we did was to take photos of the entire family, photos of the two of us and photos of each child with their dad.
Originally he wasn't given much time, so we thought those might be the last ones, but we've been blessed with more time (chemo), and we've taken lots more photos since then!

While dh was in the hospital, he had a nursing student, who, in her beautiful Jamaican accent, told me I had been given a gift. She explained that most of us don't know when our loved ones will die, and therefore can't say good bye to them. She said I knew the time was coming, so now everyone could say goodbye and make the most of our time left!

 

[Mokat76]

It is good news that he’s feeling a bit better and cranky enough to kick you out of his room. Funny how the little things are huge, eh? I truly pray he continues to gain strength so your family gains good time.

Now go get that cough seen to. I know you’ve overlooked it because of all this. Now that he’s safely cared for, please take care of you. You’re important, too.

 

[rodeo65]

Earstou, I'm sorry you and your family are also dealing with this dreadful disease! And so happy you've been given more time than originally anticipated. I hope for a similar outcome. I know DH's cancer is not curable, but I so hope the kids will get to have months or maybe even a year with him if he's able to gain the strength to withstand chemo.

I just spoke to the nurse and he's still asleep. She said he had a good night and got up to the bathroom twice. Which is also good - any time he's able to get up I'm happy because he's mostly only in bed. She said he had a good night. No breakfast yet because he hasn't been awake but when he is they'll offer him hot breakfast, cold breakfast etc. Knowing he's being well cared for is so comforting. Like I did yesterday morning, I can now get a few things done before going to see him. When he was in the hospital, he'd be texting me at 7am wanting to know when I was coming. Now he's getting rest and not so upset.

I did have the cough looked at twice in the first week as I was afraid to take it in to him - that's when he was in the hospital the first time. Once in the ER and follow up with my doctor. Both said viral and would just take time. I'm coughing a lot less than then - it's just annoying to him. He's always been hyper sensitive to noise.

 

[leebee]

Rodeo65, the fact that your husband can eat is good news! As digestive system cancers progress, the tumors grow and can block the system, making it impossible for the patient to eat at all; there is no place for the food/liquid to go. I think this is a positive sign; he's eating, and it seems he's getting some strength back! Don't be hurt that he's irritable with you or if he asks you to leave sometimes. My friend (who passed away from pancreatic cancer 30 years ago) said one of the hardest parts of having a terminal diagnosis is having to look at your loved ones and knowing that you are the reason for the hurt you see in their eyes and hearts. She said sometimes she had to ask her mom to leave because she couldn't look at the sadness and fear any longer, especially as she was trying to keep those same feelings away herself. I feel very privileged that my friend asked me to support her in the last months of her life, and shared her thoughts and feelings with me.

Still thinking out you all every day, holding you in my heart, sending you hugs and comfort.

 

[Pembo]

I started reading your thread this morning. Rodeo65, sending your strength as you try to get through one day, one hour, one minute at a time.

 

[JenniferYoung44]

Been following along and praying. Haven’t had much advice to give, but being a doctor I’d say ask yours about a short course of steroids. Sounds like viral induced reactive airway. Basically a temporary stint of asthma brought on by the irritation and inflammation of a virus. Steroids usually knock it out. Time will too, but the steroids will be faster.

 

[Snowflakey]

I am the kind that try to always think positive and look at the good in everything. Rodeo what you have said is all goodness. Take these small victories and celebrate them. Prayers DH continues to eat, gain strength and have loving memories with you and the kids.

.....you continue to impress me with your grace and strength. Simply amazing you are.

 

[Lori74]

thinking of you and your family. every day is a gift, we have to remind ourselves that. we are all with you!

 

[TavieP]

Rodeo65, I've been quietly reading and following your journey with increasing heartbreak since you first posted. I have no words of wisdom to share but all the love and hope in the world pouring your way, you and your kids are so strong and so is your dear husband. I'm so sorry you're all going through this. I'm glad the hospice has been helping him feel better, that's such good news. I hope he continues to gain strength and comfort there.

My best friend of 20 years passed away last August after a 9-month battle with inflammatory breast cancer, and as she was unmarried and childless and her siblings and mother live across the country, me and our close friends group became her primary caregivers, taking turns staying overnight at her place until she had to move to the wonderful hospice place with such caring, gentle people who helped her through her final weeks. I will always be grateful to them. It was the hardest year of my life watching her suffer so horribly, and I have so many regrets about not being able to get her better pain management when she needed it, when she was still at home. I bought her an electric recliner, too late, she moved to hospice before she could use it. I have so many small regrets but I know overall we all did the best we could at the time to help her and she loved us and knew we were trying our best.

I am so so glad that your husband's pain is now being controlled and I wish nothing but comfort and strength to all of you, from a stranger on the internet. We don't ever know for sure what the future holds. Togetherness now is what matters.

 

[Pea-n-Me]

Rodeo65, I've been quietly reading and following your journey with increasing heartbreak since you first posted. I have no words of wisdom to share but all the love and hope in the world pouring your way, you and your kids are so strong and so is your dear husband. I'm so sorry you're all going through this. I'm glad the hospice has been helping him feel better, that's such good news. I hope he continues to gain strength and comfort there.

My best friend of 20 years passed away last August after a 9-month battle with inflammatory breast cancer, and as she was unmarried and childless and her siblings and mother live across the country, me and our close friends group became her primary caregivers, taking turns staying overnight at her place until she had to move to the wonderful hospice place with such caring, gentle people who helped her through her final weeks. I will always be grateful to them. It was the hardest year of my life watching her suffer so horribly, and I have so many regrets about not being able to get her better pain management when she needed it, when she was still at home. I bought her an electric recliner, too late, she moved to hospice before she could use it. I have so many small regrets but I know overall we all did the best we could at the time to help her and she loved us and knew we were trying our best.

I am so so glad that your husband's pain is now being controlled and I wish nothing but comfort and strength to all of you, from a stranger on the internet. We don't ever know for sure what the future holds. Togetherness now is what matters.

Thank you for being there for your friend.

 

[HeatherC]

Rodeo..please know that you are in many people thoughts and prayers including mine. There are no words, just please know I am thinking of and praying for all of you.

 

[Owlpost23]

Since I'm a cook by trade,I'd just like to say to make sure whatever he eats is something he loves.He deserves to be spoiled in some small way.Hugs.

 

[AnnaFloridaLover]

Thanks for the update Rodeo. I'm the world's worst patient when I've been in the hospital. I'm not proud of it however I can somewhat (in the smallest way) understand how hard it is for your husband to be there. Continued hugs to you and your family.

 

[manning]

hang in there and search out clinical trials. Advances are being made and a treatment may be in a trial that hasn't been made available to everyone yet. Looks like you have nothing to lose searching.

 

[manning]

Rodeo65, I've been quietly reading and following your journey with increasing heartbreak since you first posted. I have no words of wisdom to share but all the love and hope in the world pouring your way, you and your kids are so strong and so is your dear husband. I'm so sorry you're all going through this. I'm glad the hospice has been helping him feel better, that's such good news. I hope he continues to gain strength and comfort there.

My best friend of 20 years passed away last August after a 9-month battle with inflammatory breast cancer, and as she was unmarried and childless and her siblings and mother live across the country, me and our close friends group became her primary caregivers, taking turns staying overnight at her place until she had to move to the wonderful hospice place with such caring, gentle people who helped her through her final weeks. I will always be grateful to them. It was the hardest year of my life watching her suffer so horribly, and I have so many regrets about not being able to get her better pain management when she needed it, when she was still at home. I bought her an electric recliner, too late, she moved to hospice before she could use it. I have so many small regrets but I know overall we all did the best we could at the time to help her and she loved us and knew we were trying our best.

I am so so glad that your husband's pain is now being controlled and I wish nothing but comfort and strength to all of you, from a stranger on the internet. We don't ever know for sure what the future holds. Togetherness now is what matters.

Don't have regrets! You did everything you knew what to do.

 

[Someluck]

Rodeo-I will offer my positive thoughts and good wishes for you, your husband and children to find comfort and peace together during such a difficult situation. I have been reading along with admiration for your strength and sorrow the heavy burden you all carry. Peace be with you.

 

[Grom]

Following along with you, Rodeo. ...

I wish you, DH, and your family all the time in the world. We are all crying, hoping, and loving right along with you.

 

[anniemae]

Just checking in Rodeo to see how today went. hope all is well today.

 

[focusondisney]

Following along with you, Rodeo. Our family is dealing with the same right now, stage 4 pancreatic adenocarcinoma. Like an earlier poster, the Whipple was performed successfully by a world-renowned surgeon and now in treatment by a cutting edge oncologist (who we selected based on his numerous clinical trials). Unfortunately, spots were found on the liver during a recent PET scan, and the team has told us their clinical trials aren’t an option now because of the current urgency to get chemo. So we have just started the “kitchen sink” approach of 12 cycles of Folfirinox... if this part is survivable, we would consider additional chemo regimens in the future but understand that it’s just buying time unless there’s an imminent immunotherapy breakthrough.

I wish you, DH, and your family all the time in the world. We are all crying, hoping, and loving right along with you.

I am sorry you are dealing with this also. Wishing your family peace, strength & the gift of time too.

 

[antmaril]

Following along with you, Rodeo. Our family is dealing with the same right now, stage 4 pancreatic adenocarcinoma. Like an earlier poster, the Whipple was performed successfully by a world-renowned surgeon and now in treatment by a cutting edge oncologist (who we selected based on his numerous clinical trials). Unfortunately, spots were found on the liver during a recent PET scan, and the team has told us their clinical trials aren’t an option now because of the current urgency to get chemo. So we have just started the “kitchen sink” approach of 12 cycles of Folfirinox... if this part is survivable, we would consider additional chemo regimens in the future but understand that it’s just buying time unless there’s an imminent immunotherapy breakthrough.

I wish you, DH, and your family all the time in the world. We are all crying, hoping, and loving right along with you.

I, too, am very sorry your family is dealing with this. Pancreatic cancer is a beast.