Hey everybody haven't been on for a long time. Just taking each day as it comes. Well now I'm getting scared...one of the tumors in Ron's neck that you can't see is growing and making it hard for him to talk now...it's gotten bigger and I'm now afraid that maybe it may grow enough to hit that f'n carotid artery...it would be quick but I'm not ready...I told him I want to have him go for a CT scan...he won't. He says he's holding out for Christmas...he was crying...then again he's been hitting the Jack Daniels my daughter bought him for his birthday Tuesday I told him lay off that Jack. I'm afraid...what will happen, what will I do, I so know that the lungs weren't going to get him I knew the tumors on his neck will win this f'n battle we have fought I know the damn oncologist knows nothing bout Oral Cancer he said the lungs will get him before the ones on his neck...I disagree. I want a CT scan but Ron won't do it he said he's done. I'm not! I can see the tumor on his neck the left side the one under his chin has slowed down but not inside, I wish that it would be his lungs, with the one on his neck...it can happen in a flash I've read that here so it's not like he's you know in hospice cuz he's able to move around but I feel it will be bam it's done but I will be at work...or sleeping...I'm scared. What do I do now? Make him go to a nursing home to be watched 24/7? What do I do?

Im so sorry, Sue!!!! How I wish he was more considerate, but he seems to be very stubborn. The only think I can suggest is to have a calm discussion with him (when he isnt drinking). Explain to him how afraid you are of his future and how you would love for him to get a CT. Tell him its for your peace of mind, so you wont worry so much.

(((HUGS))))

I feel your terror. I don't know. What will a CT change? . Do you really want to know how things have progressed ? Sometimes I think ignorance is bliss. It's this awful fear of the unknown and impending loss. If it does erode an artery it will be quick and there won't be anything to do except hold his hand. In the meantime you have him at home where you can be together. These are precious times.
Here in NZ Hospice also supports the patient and family at home. Maybe you should contact hospice and they can support the two of you. Both with advice and practical help. Maybe just talking to them about your fears will give you enough reassurance to cope.
I hope this helps Sue.
Tammy.

I don't think the corotid issue is the same here. My tumor grew around the corotid (and the scar tissue is still there) I now have an increased chance that the corotid will blow (about 2%)this hangs over my head forever. I just live with it. This is from the direct blast of radiation the corotid took. The radiation makes the artery wall stiffen.

The tumor will not close off the corotid, it will grow around it. I don't know what a CT will tell you here. I don't think this will be an issue for you to worry about.

Oh Sue. What a situation. I don't know what to advise for the best, but if it were me I'd be pushing again for the CT at a sober moment. I need to know what I'm dealing with. Linda x

Sorry sorry sorry. Have you considered Hospice? They are wonderful and are equiped in all ways to help both of you.

I'm so sorry about all this truth be told, losing him quickly would be a blessing rather than having him struggling to breath and slowly suffocating to death. I would push for them to do something rather than just a ct hugs and love to you.

Oh my goodness, Sue! It sure sounds like you need somebody there to help you and Ron through this. Maybe Hospice would be able to offer you some other ideas in caring for Ron - even if he refuses to cooperate, it wouldn't be such a heavy burden on your shoulders to have someone else there. I've always heard such good things about Hospice. And it would help relieve some of the stress you've had to deal with.

Jim's hospice team helped me prepare for similar event, I didnt need to use and I hope you don't either. 911 was informed that they may be called to offer assistance POLST in place so they knew not to resussitate and there was a calling tree of people who could come quickly to help. I or kids just needed to make one call. Put dark colored sheets on bed. Have plenty of dark towels ready, etc. I used red ice cream pail for when he was sick.n I can't imagine being able to do this but the main thing they said to do was stay calm and be there for him, and that it would happen quickly. I so wish you didn't have to go through this! Treasure every minute!

So sorry to hear of Ron's condition. Agree that hospice could be of great assistance to you both. It doesn't matter that he is mobile and as his condition worsens they should be able to help with finding care for when you ae not home as well as helping you know what to expect as things progress.

I agree with Tamvonk that having a CT wouldn't change anything. I, personally, believe strongly in patient's rights including their right to say "enough is enough". Sometimes we want to hold on to our loved ones so much we put our wants ahead of theirs even though they are the ones who bodies are being ravaged by disease and treatments. As for Ron's drinking, it is likely his way of coping with knowledge that his condition is terminal and emotional (and perhaps physical) pain. Obviously he is isn't comfortable talking about his feelings, but "crying and hoping to "hold out until Christmas" shows that he thinking about the end. At this point why try to remove the only coping mechanism he has?

The job of being a caregiver is so hard - the job of letting go even harder. I hope that you will be able to use the time you have to show Ron your love and support and that you will use friends and this forum to help you deal with your fears, anger, frustration.