I'd like to introduce myself, after finally stumbling upon this informative forum. I am Donna, the caregiver, and often the most outspoken half of us. My husband of 49 years has been fighting oral cancer since 2011. Twice now, we've been given the "all clear", and twice it's returned. He's just had his second hemiglossectomy, and we're both pretty frightened at this point. Since he's newly post-op, our current struggles involve getting some nutrition down him. He was stubborn and insisted the NG tube be removed after just 9 days, but getting down (and keeping down) meds and nutrition is a major effort. He's only been a few days without the tube, but even drinking a little soup is almost too difficult and I'm hoping he will consider re-insertion at our appointment next week. Ideally, doctor will insist upon it. Speech is another problem, but we both feel like it's too early to give that much thought. After all these years together, we pretty much know what the other is thinking, so words are not always necessary. I look forward to learning new ways to cope, through this forum.

Well, GmaPajama - you have found the best place to be for lots of good information and support from people who have been where you are. My son did not have any kind of tube but there were times during his recovery I wish he had. I'm sure others will be along that can give you some good suggestions. It took a while for my son to get from the clear chicken broth to even manage a noodle or two with it. And not being able to talk was very frustrating but we did manage to develop a sort of sign language i.e. thumbs up or down for good or bad, and I would ask him questions with yes or no answers or give him numbered choices so he could just hold up 1 or 2 or 3 fingers. If he uses an iPad he can type his comments or questions. Come here often, there is always someone to listen, and care and help.

Welcome to OCF. Our site is a great place for info and support. As you know, being a caregiver is a tough job! We are here for you too so feel free to vent.

Best thing to do is focus on his intake. Having a stubborn patient can really make this a challenge. But one way or another he must take in enough to rebuild his body or he will feel absolutely horrible. Every single day he should be taking in a minimum of 2500 calories and 48-64 oz of water. This is especially challenging when Im sure his throat hurts like heck making swallowing difficult. Im very surprised the doctor removed his tube so soon.

I just posted this for another new patient...

Here is a list of foods that work best for those patients who are relearning how to eat. One of my first foods after finishing rads was canned peaches, the thick syrup helps them to slide right down. I hope this list helps to get your husband back to eating properly. Im sure your husband must still be swollen and sore from his surgery so maybe some of these foods will be easier for him to eat.

List of Easy to Eat Foods

Thank you SO much, Anne-Marie and Christine. With your replies here, I feel a little less alone. It's nice to realize I will get input from both the cancer patients and the caregivers. One will help me cope, and one will help me understand. Wonderful combination!

I too was surprised doctor went along with removal of the NG tube. But I think he knew hubby would remove it himself if he had to. It was almost surreal as hubby is one of the world's quietest people. Never makes a fuss about anything - but that tube was going, one way or the other.

He does have an Ipad, but we'd not thought of it for communication. Great idea, and one that will be put to immediate use. Thanks!

Canned peaches! Of course they're slippery! I can't believe I hadn't thought of that. And I did print out the list of easy to eat foods. Lots of good ideas there. Thank you!

He was actually doing a little better by dinnertime last night. I'd made one of his favorite soups and pureed a cupful. He got more than half of it down, and was able to follow that up with an entire ensure. Slowly, of course, but he can take as long as he needs.

Meds are another story. Though I crush them into a powder and mix with a couple tablespoons of ensure, they are awfully hard to get down. I think I'll try pressing the powder into the sides of a slippery peach chunk. Yes, this world of support is going to be SO helpful!

Thanks again!

Donna, there is even an ipad Ap that will speak whatever you type. I have a friend who uses that everyday since one of her bouts of oral cancer left her unable to speak. Im not sure what its called but it should come up if you do a search for it online.

The IPad App is called Speakit It. It is free to download.
Tammy

Thanks, We did download the Speakit App, and it looks like it will be a big help. IF he'll use it ... mostly he just wants to be understood, and I'm trying so hard to do that. In any event, it's a great idea and I thank you both for mentioning it.

Back to the slippery peaches. What a mess - LOL! They wouldn't go down, even in tiny chunks. I ended up chasing them all over the kitchen and we had ourselves a good laugh. But I did puree the rest of the can, and that definitely covers the taste of the meds. So it all worked out in the end. Plus, the laughing did us both a world of good.

I've been reading through the other parts of this forum, and am amazed at how many people have gone through the very same things as us. Feeling less isolated is good for me ... and I intend to learn more and more here.

Welcome to the forums!

I am also a caregiver to my husband, there is a ton of information posted on the forums here, and when in doubt ask, the people here are great about answering any question or pointing you in the right direction.

Also we were using an app for communication but my husband's speech therapist recommended being careful with that, as you can use it to much and not work the muscles and weaken them in the process(from a rehabilitation stand point).

~Trinity

Donna - I can relate to your husband just wanting to be understood. My son got so frustrated and upset with me for not hearing/understanding what he was saying. When I saw him waving his arms round ands his mouth barely above a whisper and trying so hard to make me understand, it was almost funny but I was very careful not to even smile or snicker - so I told him I had a hearing problem and he would need to be patient with me because I was really trying hard to understand him. At the time I didn't have a hearing problem but I would have said anything to help him feel more in control of some small thing when so much of his life seemed out of his control. Everyone is different, of course, and I'm sure you will come up with ideas of your own when you see how he reacts to each situation. Anytime you can find humor in a situation helps a lot as you found out yourself. Good for you for being such a great caregiver!

Sorry I am late getting to your posts and questions, my husband was in hospital for 16 days in October with aspiration pneumonia and that means a whole new routine for me.

You can put your husband's meds in some apple sauce. I make my own. I vary the choice of apples, and I also mix the apples with pears. You peel the apples/pears, put the pieces in about two inches of salted water in the pot, bring it to boil. At that point, remove the lid and let it boil for about thirty minutes on lower heat. Then you pur�e the fruit. I make a whole week's supply each time as apple sauce keeps well in the fridge. I just think that if eating is difficult, I would like my husband to have something that is tasty.

It is a tough job being a caregiver. I'm glad you are on the forum. Here we find people who will understand what a tough fight it is for us.

Thanks Gloria - I am of a generation that much prefers to make everything from scratch. I usually do my stuff in big batches, as the various seasons come and go. Never thought to just cook up a few apples for hubby's meds though. I'll add some cooked pears, for variety. He gets everything in a thin puree, but his taste buds are still sharp - so I try to prepare things he's always liked. I do have to admit pureed lasagne didn't quite measure up.

As for the speech ... I'm sure we'll be working on it for a long time to come. After the 1st hemiglossectomy, it was several months before anyone but me could sort out what he was saying. He does practice a lot, and I have to be careful to be sure I get it. It would be so easy to just nod my head, but he needs to be understood - so I ask him to repeat till I understand.

Thanks again for all the information. This is already a place I look forward to checking every day.

In case it helps anyone, - Re the Speak It for reading typed text, if you have an iPhone or iPad, there is already a built-in feature that allows this. I have it on my iPhone 6s, but it was also on my iPhone 5. You just have to go to settings and the complete directions are here:
http://www.imore.com/how-use-speak-selection-visual-accessibility-your-iphone-and-ipa
For Android phones, could be they have the same feature?

Welcome Gma. This is the best place to come for support. I have been away for awhile, but coming back to support my fellow survivors.