Hi Folks: I ended treatment on 3/21. It's been 10 days of a recovery that has proven to be worse than anything I endured in treatment. I can't talk because of all the mucus in my mouth (which dribbles out) and I have a salivary gland that non-stop secretes thick, sticky stuff. And I am beyond fatigued. What do people remember from their recovery. My doc says expect a 2-4 week recovery, that I will suddenly turn a corner and feel better fast, but that this initial period will feel like no change, no healing is happening. The burns on my neck are healing well and the nausea from my last chemo is gone. But when will my throat at least clean up? One nurse said many throat radiation patients will report of coughing up a hairball like mass of dead cells and that this often brings on rapid healing. It'd be great to hear other people's experiences. I feel quite hopeless and frustrated. Patience is hard when I want to return to my life so badly but feel so feeble and so compromised. -Michelle

Michelle, sorry to hear you are having a difficult time. Unfortunately, radiation keeps working after your treatments have finished. It is not unusual for you to still feel pretty lousy for the first 2 or 3 weeks after treatments. Your doc telling you a 2-4 week recovery is way off target. Most patients begin to feel better 2 - 3 weeks from finishing radiation. But this is only when they begin to first start to feel better. Full recovery can take up to 2 years. You should expect to face one month of recovery for every week you had rads.

Keep up the good nutrition with minimum of 2500 calories and 48 oz water. This will help your recovery. Try to get extra protein to aid your healing.

Best wishes with your recovery!

Michelle Ann,
I felt really bad for 10 days post radiation/chemo (get me to the hospital bad at times). I felt less desperate for the next week, then a lot better. I am 5 weeks out now. I found everyone's "better" is different. My definition of "better" is far from perfect. I still have some pain, take little for it, I am uncomfortable with a lot with stiffness, collection of fluids in my neck, occasional troublesome mouth sores, and lots of muscle aches. I don't have the thick saliva issues you have, and that would be hard to take. I did have it with my surgeries I remember. The skin on my neck is not burned anymore, but itches at times, hurts at others, and looks dark and blotchy. I ignore lots of all of this, or just treat it--like putting cream on my neck, soda rinse in my mouth, and then ignore it if I can, because I want my life back, too. Most of it is not significant in terms of serious illness.

I get enough rest, drink a lot of water, eat the best diet I can, practice excellent dental hygiene, and try to keep a sense of humor. I talk to my friends locally. Oh, yes, I try to get exercise every day (not for the first 2 weeks though, except some of the swallowing and neck dissection exercises). That exercise has improved all the muscle aches I was having.

So that's me. We are all different. This is not putting anyone down who had more trouble. I know I am not going to be the same as I was. I know my recovery is far from complete, but I can function and can even have fun with friends and family. It might take you longer, but you will feel better.

Best,
Anne

I had a bad 6 weeks following radiation which finished 7th July 2010. 5th September my wife and I took the car down through France to Spain and back for a 4 week trip staying with friends in various places and some hotels in between. Had to stay out of sun and needed a nap most days but what a feeling of freedom. Swimming was good (had no problems from PEG - other than a few curious glances) did lots of walking and its was a hugely restorative experience. We are all different so you must take what ever from everyone here but the unpleasantness of those first few weeks is a distant memory for me now. We waited until 5th Sept because I wanted to be completely off thepain-killing narcotics for at least a week before leaving to go anywhere. That coincided with me managing to start eating soft food again rather than being very dependant upon the PEG. By the end of our trip, I was no longer using any food supplements. Hope that rough timetable helps with your expectations. Even started to enjoy wine again in the last few weeks although only partaking in moderation. Good luck, try not to dwell on the bad stuff, there's always good stuff to fill your mind with.

Oh Michelle, I can tell by your post that you're in the midst of the worst of it now. I was certainly there too- those first 2 weeks after treatment were the worst! I think it was even magnified by not having to go to treatment - the focus was just on getting better and that in no way was happening quickily enough for me! Look at your progress in weeks not days - that really helped me. I asked (only half jokingly!) to be put into a medically induced coma that first week because I was so miserable - it seemed like a really good idea - let my body heal without having to consciously endure the slow process.
Have faith - you will get better than this! This time, one week from today, i hope you can find yourself amazed by what's better and that just continues for you - one week at a time!
Hang in there!

I appreciate hearing your experiences. I wish you all the best, too. I wish all of us good and continued healing. This cancer stuff... I never knew how hard it was... mentally and physically. Not talking (I have five year old twins) is the hardest. But we go on, don't we. Thanks again. Best healing wishes to you. -Michelle

Thanks, Jennifer. You are an inspiration. You and everybody. These two weeks since treatment ended have been the worst of my life. I feel so feeble and helpless and the coma you mentioned, I wanted the same thing. (Want the same thing!) I hear my kids downstairs and it's both a blessing and a curse. I mean I LOVE hearing them laugh and talk about their day, but I get so sad to be upstairs, tired beyond belief, with a nasty mouth and throat. But you are right, it will get better. I stare into my open closet and imagine myself wearing my clothes again. And I did some online shopping. True American! But it felt good. Something else besides mucus and PEGs and phlegm. And this week is better than last. Thank you and to you I also send good thoughts for continued good health. -Michelle

Michelle - you're in the thick of it, no question. It's going to get better, guaranteed. I think you're already doing better than I was the first few weeks after RT. I could barely get out of bed. And I don't have kids, let alone twins!

Thinking of you.
David2

Thanks. I appreciate the thoughts. I am hoping week three of recovery (starts tomorrow) brings a little positive change. People here seem to thinks so and my docs do, too. I just want to talk and for my mouth to stop making gunk. That would be a start. And if the gunk stopped, I would start to try drinking liquids and maybe soft foods. My mouth only hurts when the gunk comes. Be well. -Michelle

Three weeks was the turning point for me but progress was very slow (as in almost difficult to measure) in the first 4-6 weeks.
3-4 weeks the gunk should stop - rather suddenly in fact. Takes a lot of patience to get through the end of Tx. Hang in there - it'll get better