Can I ask how to reintroduce food. I'm a bit at a loss here.

Simon has lost now 25 kg and simply refuses to eat. Gagging having been the trigger for not eating which then led to getting sick.

Also he developed two mouth ulcers and the mouth wash is burning.

Consider getting a Nasal Tube and by pass the mouth for a few weeks. It was a game changer for me post Tx. It's a non surgical 10 minute in office procedure and he can pull it out when he's finshed with it, at least my doc gave me the OK to do it.

What is he gagging on, Ensure/Boost or solid food? At a post treatment workshop that I attended, some people started with apple sauce, rice pudding etc but got most of their daily food intake from Ensure/Boost. That was some four or five weeks post treatment. Have you tried rinsing with flat club soda? Our hospital recommends that for mouth sores, too. It worked really well for John. You might want to look for the low sodium club soda at the supermarket.

Hello,
Not eating is not good but what is worse is not drinking liquid and keeping swallowing working. Dehydration comes on very fast and can send him to the ER in a blink. Keeping the throat and swallowing working is critical too; otherwise there is chance he might be on tube long term.

I know you do the best you can but keep trying.

As to gagging, get some anti nausea meds.

Ask at the treatment center for a speech pathologist. A barium swallow test should be done to ensure there isnt any physical problems preventing proper swallowing.

Thank you for your suggestions.

The gagging started in week four of treatment. Simon said that when anything touches his tongue he can't handle it and the gagging reflex kicks in. He says swallowing is fine.
He has anti nausea meds but the oncologist said that it isn't related to nausea as it is his tongue otherwise he's fine.

He manages to drink 3 glasses of ensure and maybe 3 glasses of water. Definitely not enough but I can't make him do more. Sometimes he tolerates wheet bix but that's it.

He gurgles with soda water to get rid of excess mucous which seems to help. The mouthwash , Curasept he's on, stings and he doesn't tolerate it.

His energy levels are very low. Tired and exhausted all the time.

Since rads was just finished 9 days ago, its understandable that he would still feel pretty lousy. It will be a couple more weeks (longer if he doesnt increase his intake) before he begins to feel better. The fatigue can hang around for months.

Its his choice if he wants to get better or continue to feel horrible. The first 3 weeks after finishing rads are the worst ones as the radiation is still working. This is where he runs the highest risk of ending up hospitalized for malnutrition and/or dehydration. Im sure his throat is feeling very painful so I give him alot of credit to still be swallowing 6 glasses of anything.

I hate to say it but you might have to be blunt with him so he understands. Its up to him how quickly he recovers, increase his intake and bounce back quicker or continue doing only 3 glasses of ensure and it will be much longer.

Being a caregiver of a difficult patient must be a very frustrating job. You are holding up very well! Much better than I think I could have done.

Best wishes!

Heike - Just a note about the mouthwash. . . . My son went back and forth between two different mouthwashes - Magic Mouthwash and something else that was sold over the counter at the drugstore. When the first mouthwash wasn't working, the second one did. And then when the second one didn't work anymore, he went back to the first one which worked again. So It might be a good idea to check with the doctor about trying a different mouthwash. It helps to numb the mouth for a few minutes so that swallowing can be less painful. For my son, the two weeks after treatment ended were absolutely the worst with not wanting to drink or eat and being so very tired, sleeping a lot, to the point where I would often check to see if he was still breathing. But slowly, after the two week mark, he began to improve and each little improvement was celebrated because I could then see the light at the end of the tunnel. I had to record all his intake of food and water and when he argued about not wanting to drink, I would point to the chart on the refrigerator so he could see for himself that he hadn't had the daily quota of liquids. It's so hard to see someone you love suffering so, and sometimes you have to try different things before something works. It does get better so just hang in there.

Using a Waterpik on the lowest setting with the tongue scraper attachment, warm water and a bit of the mouthwash in it works very well too for getting rid of the mucous.

Gloria what is a waterpik?