Welcome to OCF! The white on your tongue could be thrush. See your physician, it needs prescription medication to cure.

You are just starting your recovery phase. Weight gain will take a long time to happen. Every single day until at the very least you hit the one year post rads anniversary you will need to focus on your daily intake. Every single day you should be taking in at least 2500 calories and 48-64 oz of water. Even taking in 3000- 4000 calories daily is not too much. Your body has been thru the war and has burned up an incredible amount of fuel. This will continue for many months. AS complete recovery can take every bit of 2 full years after finishing rads.

By the time I finished rads, I had lost 65 pounds. During my recovery I began drinking gigantic chocolate peanut butter milkshakes. Some days I would drink 2 or 3 shakes plus attempting to eat and using the feeding tube. One day I sat down and calculated the calories per shake. I was shocked to see they had anywhere from 1200-2500 calories each. That meant some days I was taking in over 7000 calories and still I did not gain an ounce. This continued for several years. I finally began to put a few pounds back on about 5 years post rads. But to this day (Im almost 7 years post rads now) I struggle with my daily intake and maintaining my weight.

As far as pain goes, keep it under control. Its nothing to be ashamed of if you need to take pain meds. I understand not wanting to use them but its not one bit helpful to the patient if they are in pain. That just causes undue stress. Yes, the patch should have been stepped down. Your doc should have overseen this! Fentanyl is the strongest pain medicine available, it needs to be handled with care following directions exactly. There is 12.5, 25, 50 and 100mg patches. It takes about 24 hours to adjust from the patch being put on or taken off.

Do NOT rush to get rid of the feeding tube. Recovery is full of ups and downs with a few major setbacks here and there. So much better to have it and avoid malnutrition and dehydration! Those are not fun, it makes you feel so bad you think you may be dying. If you can go for 2 months without using the tube then its time to be rid of it. Until then, its a tool to help get you thru this phase.

Hang in there! Recovery is a long road. In a few weeks you will be doing so much better