Welcome to OCF, Micki! You're in the right place for info and support to help your partner get thru everything they're dealing with and have coming up.
Feeding tubes are an necessary evil for many of us oral cancer (OC) patients/survivors. I completely understand your partners frustrations with feeding tube issues. Unfortunately, many who have a feeding tube feel they're left on their own after they get their tube. The first suggestion I have is to ask your partners doctors if they are able to have a visiting nurse check in with them a few times a week to help with getting comfortable with the tube. The visiting nurse option usually isnt automatically offered unless the patient asks. It requires a doctors prescription which shouldnt be a problem since your partner has recently had surgery and probably is facing additional treatments. Ive used visiting nurses in the past and found them to be very helpful with tips and tricks the average feeding tube user never learns about. Ive used a feeding tube myself for the majority of the past 12+ years and am positive I can answer most of your partners questions about using the tube. Even though your partner does not care for having a feeding tube, it would be easier if they can think of it as a temporary tool to get them thru some rough time until they're recovered enough to eat normally again. One tip thats important is to keep swallowing even if its uncomfortable and/or difficult as the muscles used for swallowing can quickly forget how to function when they arent used frequently. Even taking small sips of water, or a couple bites of jello, pudding, yogurt or other soft easy to swallow food is a big help to keep those muscles working properly.
Ive found wearing a stretchy tank top that fits snuggly a great option to holding the tube in place. Some patients have wrapped an ace bandage around their abdomen to keep the tube in place, some will use a piece of paper tape which usually works better than regular very sticky medical tape. Ive also used the wide pregnancy bands found at most hospital pharmacies. They're adjustable and will keep the tube in one place without being uncomfortable. Plus, the adjustable velcro closure works well fitting patients who usually will lose weight no matter what they do to keep it on. Thats another topic that is very, VERY important!!! Weight loss is a sure sign the patient is not taking in enough on a daily basis and needs to increase their intake to at least 2500 calories and 48-64 oz of water every single day. If they lose weight while taking in 2500 calories they should increase their daily intake to 3000 or even 3500 or more. I know it sounds like a ridiculously high amount of calories to take in but these numbers are the bare minimums every single OC patient needs every single day for at least the first year... especially those facing radiation treatments. OC cancer burns up calories at an extremely high rate due to fighting the cancer while also trying to rebuild itself at the same time.
Below is a link for easy to eat foods that are less spicy, less acidic, have a smoother texture and easier to swallow for most OC patients. Best thing to do is try going to restaurants that have buffets to give the patient many options to try a wide variety of foods they think might work for their current situation. One food that surprised me was canned sliced peaches with the juice they are very easy to slice into smaller pieces and slide right down without needing alot of chewing or maneuvering in the mouth to eat them.
Hopefully all the tips your partner will find helpful. Best wishes to you both!!!
OCFs List of Easy to Eat Foods
