Welcome to OCF, Susan! Im sorry to hear what you've already been thru! Im very glad you're here, Im sure we can help you with info and support!!! There arent many of us 3 timers around.
The best thing you can do to improve your swallowing is to work with a SLP. Ive seen many friends have substantial improvements in their ability to eat, swallow and in their enunciation with a professionals help. First you will need to get tested to make sure you are able to swallow safely. Once your current assessment has been done the professional will know if you can improve upon your current level or if you risk aspiration pneumonia by trying. Unfortunately, quite a few OC patients are not able to swallow anything after going thru OC treatments and recovery. The swallowing muscles can quickly forget how to function together when they are not used on a daily basis. This is why we always advise everyone who is doing rads to keep swallowing every single day, even if its just tiny sips of water. Those tiny sips can make a huge difference in if a patient will ever be able to eat and drink close to normally once they have made a complete recovery. Radiation (brachy too) can do so much damage to the areas around where the tumor is that a patients ability to regain their swallowing function is pretty much on a case by case basis. Ive had friends who could barely eat anything besides yogurt, applesauce and pudding but after months of working with a SLP and doing everything they were told including swallowing exercises they've made significant progress. They might not ever be able to eat anything they want but they've improved enough to eat many more things than when they first started.
Your current medical team should be able to tell you what other things are available to help you at that facility like a PT or SLP or even a counselor to talk to. Many of us benefit from being able to talk to someone about what we are going thru. Many also take anxiety meds, caregivers do too. Patients who have partial glossectomies should begin PT as soon as possible to help them learn how to manuever their new tongue. If you havent talked to a PT, SLP or speech therapist you may want to check into this after you get your current situation taken care of.
If you are not content with your current doctors, you may benefit from going for a second or even third opinion before more treatments. Id also advise if at all possible for you to seek out a comprehensive cancer center (CCC) as they are the most familiar with complex cases such as yours with having recurrences. Time is of the essence if there's still cancer left as recurrences can move very quickly.
Best wishes with everything!!!
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