Denise...I wish he would try some sort of pain relief but he has refused. He took some hydrocodone briefly during treatment. It's just crazy that his throat has never been that painful 3-4 out of 10. He is fortunate.

Another question: is it important for him to try to swallow..is it like a use it or lose it scenario?

I asked what has changed as he had me worried last night but he said he must have been delusional. I'm going to buy a white board today and write the day, date, etc. like at the hospital as he is very confused about things and asks the weirdest stuff so maybe i can help him a bit with small amounts of info.

I told him we are going outside today and he liked that idea. I have to work on the psychological stuff by getting him moving and get him into the sun a bit for some Vit D. he literally lays in a totally black room year round. I have yard work that I need to do while it's in the 50s anyway. I also told him if he gets stir crazy, we will take the hour drive round trip to a medical supply to buy more feeding tube syringes.

He's not fighting me so much these days. Already got at least 8 oz of water in via feeding tube. He's still rarely going to the bathroom...maybe once a day.

Yes, swallow can be a use-it or lose-it thing, but even just swallowing a sip of water or making the swallowing motion can be enough practice for the duration. And there's therapy for after, to help regain it ... though of course, the less you've lost, the better it helps. The important thing is nutrition and hydration and feeling okay. Swallow is secondary to that, even though it's really important. Swallowing can be worked on, but not till you get better, which is why I put the nutrition and hydration first. Others might rank it differently, depending on how much work they had to do to regain it, so definitely take other viewpoints on this if they come in.

thanks Kristen, I just wondered from the "experts"...those who have BTDT! I'm not pushing him to swallow but offering once a day. Some days he tries, some days he doesn't want to.

He opened the blinds today and is letting sunshine in! He didn't do that when he was healthy.

I've gotten 20+ oz of water in him and we have done half of the boxes of formula. I wanted more syringes but you have to get a prescription to buy them from the only Hammer Medical Supplies within an hour of me. I requested a prescription from the nutritionist. Filling a couple of tubes over and over is getting old since we do this 4 times a day.

His mind is still confused but he looks better and is sleeping so much less.

For swallowing I made a huge effort to swallow throughout treatment, because a friend’s mom who had radiation to her throat 9 years ago never did get back to swallowing, and she’s been on a feeding tube for 9 years now. I had about a 1 week period where I ate only through the feeding tube because swallowing was too painful, but even then I still kept sipping water. I finished chemo radiation almost 3 mos ago now. Swallowing is very effortful, and I can only manage very soft foods, or soft foods with lots of gravies, but I’m happy to be able to eat real food. From my experience I would encourage trying to keep swallowing.

You should discuss swallowing with your husbands doctors. He may need a barium swallow test to ensure he is able to swallow correctly (you may too embishop). The swallowing muscles can very quickly forget how to function together when they are not used frequently. Most docs say to swallow several times per day, even if its sips of water here and there thru out the day, or to try doing a few dry swallows. Once patients lose their ability to swallow it can take them years and some major work with a SLP to regain their ability to safely swallow. You definitely do NOT want to push anyone to swallow who is not physically able to do it. That can and does cause aspiration pneumonia which is fairly common for OC patients.

Connie, often hospital pharmacies will carry feeding tube accessories like the 60cc syringes as well as all kinds of other helpful items. You may have to ask for them or check on the Oley Foundations patient exchange website to see if anyone is giving any away. As a feeding tube patient, every month he should be given at least 4 of the 60cc syringes right along with drain sponges, paper tape and feeding bags for use with the feeding pump or gravity method of doing feedings. These items are medically necessary but he will need a prescription from the doc to get them.

he is swallowing ginger ale to take his meds and it seems to go pretty well. He has finally resigned to using the feeding tube which is great.

I called and am getting 15 syringes so that I will have a supply. Never dreamed feeding tube syringes required a prescription. The good news on that is they will be covered by insurance.

The cancer center is offering a home visit and free counseling. I will have to run it by him as he usually balks at stuff like that.

He's in a different place now where I can deal with him, he's not happy about the feeding tube but I tell him when I'm coming back to help him so he can get used to the idea.

I did take him out to Walmart and he used the scooter thank goodness. I was concerned about him walking through the store. We got him some more jeans and some grooming things so he's wanting to take more care of himself. These are good signs.

I bought a white board like they use at the hospital. Not sure he will be happy about it but i"m writing the day of the week and the date on it as well as how much water he's taken in and formula plus his weight. It's helpful for me but also he is completely unaware of the days of the week and it will be good for him to know. He's coming out of this so much faster now that he is allowing nutrition.

Positive steps!

2 steps forward 1 back.

He was too queasy to do the last 2 boxes last night. I let it go. A counselor friend who knows him told me that if he doesn't want to get well, let him get sick again and end up in the ER. So I went in this morning and he was fighting doing his feeding so I said, I am not going to keep doing all this for you, you need to step up to the plate. Oh my, he has a voice today as he got quite loud with me. I told him to stop acting like a child. He finished radiation 2 weeks ago and those 2 weeks would have been the worst of your life. So he says, if I do all this (feeding and water), you are telling me I will get well enough to do it myself? after protesting how sick he is and just can't. I said well, this isn't the path I would take but you are too deep in now and yes, you have to do this. I did fill the syringes and he did them more quickly this time. The counselor said this is how he operates as she has counseled him, he's controlling you by making this a difficult process. She is right. I'm such a nice person and I was making it too easy on him. Yes, he was pretty sick but that's because he refused to do the feeding tube for over a week. That's not my fault. It's like he had a death wish in some ways. I told him that I will be gone this afternoon and tomorrow and will not be available to help with those feedings so he's going to have to take this on himself.

Hope no one thinks I'm harsh but I had to do some tough love or this could go on for months and months with an invalid who has chosen to be an invalid at this point. I know he must be feeling better as this is the old self when it comes to being sick...the worst anyone has ever been sick. Remember his pain never was beyond a 3-4 for him...he was fortunate. It was at a 2 last week. He refuses to use any pain meds and fights using the nausea meds.

He wants to know how to get rid of the sore throat....I told him time but not sure if there is another way.