Hi Rod! Welcome to OCF! Thank you for taking the time to detail what you have been thru. It helps us to better help you when we know where you're coming from. Im so glad you have joined our family. We will do our best to help you with info and support.

Everything you described sounds to me like its pretty normal. I was told by my docs its one month of recovery for every week of rads. But... (theres always gotta be a but) it takes 2 years for your body to completely recover after going thru rads/chemo. I know it sounds like a long time but you have been thru the war and it takes time to rebuild your body. Your sense of taste is probably noticeably improved than when you first finished rads. When you are in recovery and plateau, it can be difficult to measure all your improvements since finishing rads. None of us OC patients/survivors can ever get our lives and bodies back into our former (pre-cancer) states. Recovery can be particularly difficult with the ups and downs and setbacks. Im so very sorry you were doing so well and have bottomed out with no noticeable improvements for a while. It can be so disheartening after everything you have been thru to go backwards. To be honest, depression is very prevalent among OC patients/survivors. Even caregivers can become depressed watching their loved one go thru treatments and recovery.

After my first round of OC, I was still not the best at 2 months post rads but I returned to my office job part time. My head was very foggy and I wasnt able to concentrate or remember enough to do my complex office job. I was given easier side jobs to do for at least 6 months before I returned to my regular job on part time hours for about a month to help ease me back into my regular routine. At this point I was still not doing the best with eating. I still needed my feeding tube to sustain myself.

Im not sure if you are aware... your body needs at least 2500 calories and 48-64 oz of water during treatments and at least the first year (even better to do this until 2 years) post rads. After what we go thru fighting both the cancer and trying to heal our bodies we need extra calories to aid in our recovery. I was taking in 5000 -7000 calories daily by drinking giant high protein chocolate peanut butter shakes and I was still fighting to keep weight on even at 6 months post rads.

One thing to understand about oral cancer (OC) is every single patient is different and will experience things in their own unique way. I know that doesnt help make you feel any better about your situation. I just want you to know that what one person experiences the next may have complete opposite results. Overall Ive seen and helped hundreds of patients over the years get thru treatments and recovery. Ive seen many patients go thru exactly what you described. We all tend to get down on ourselves and our situations when we dont make enough progress. Setback can be especially difficult to take mentally as we all secretly wonder if thats as good as we will ever get. Usually most improvements happen within the first 6 month post-rads. But... thats not to say you wont still see many more improvements even after you are 1 year post rads. Some members have reported jumps in their sense of taste even after 2 years post rads. These things can be influenced by all kinds of minor things we dont give a second thought to. Believe it or not, some vitamins can impede your recovery which is why any supplement needs to be ok'd by your doc before taking. The average person doesnt have the in-depth knowledge of how vitamins and minerals work when combined with rads, chemo, anti-nausea meds, etc.

Hang in there, the worst of all this is in your rear-view. We have been where you are and completely understand what you are going thru. Best wishes with continued improvements in your recovery!!! You'll get there, it just takes time.