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How do I know when I can get off my feeding tube?

Head & Neck Cancer | Last Active: Jun 11 7:51am | Replies (26)

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@hrhwilliam

Hello @jg99t9 Seven months post seems excessive but each case is different. And you are correct in that many foods now are difficult to eat primarily due to lack of saliva. As for myself I started a list of what I can and cannot eat and built up from there. I ate a lot of low sugar custard pie for example. No bread unless nibbled with a lot of butter. No rice, white meat chicken, celery, etc.
There have been many discussions in the head and neck group about dry mouth. The search box above can take you to several.
The pain of swallowing can take a few years to go away completely but does seem to get milder over time. About fifty muscles are involved with a simple swallow and many of them have likely been radiated. Not to mention the nerve damage which likely you are aware of in the neck, shoulders and arms. But when you can eat enough to sustain weight and nutrients without a feeding tube, out it comes.
I know this isn’t what you thought you would be thinking about in life at this stage but tough times never last, only tough people do.

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Replies to "Hello @jg99t9 Seven months post seems excessive but each case is different. And you are correct..."

Thanks, William. I guess everyone is different. I suppose I still have it for insurance. Sometimes I feel a little better and then the next day I feel worse. It's also tough with all the constant mucus build up that I can't seem to get rid of. I'm gonna pick a day and try to not use my feeding tube and hopefully my appetite will force me to eat more. If that works than I will gradually keep it up.
Thanks again,
Al