Hi all. I know it's been awhile so I wanted to check in. Although I haven't had the energy to post, reading these threads continues to help me immensely. I am about 5-6 weeks out from Rads now and am so much better overall. Am off narcotics, mucositis has healed, speech has normalized, and ropey mucus has converted to dry mouth (although I suspect it could be worse; I do have some saliva). I have to say, the ropey mucus was almost the death of me. Worst.side.effect.ever. But it's gone now so am thankful. I never got a PEG and lost about 15 pounds during the worst phase, but pushed myself very hard to drink Boost VHC to mitigate the weight loss and now am no longer losing. I am having a very hard time converting back to real food though. As many have said, I have some taste, but everything tastes odd and unsatisfying. Does this get better? I sure hope so. I also seem to still get nausea and stomach cramps when I eat and don't know if this is left over Rads effect or ? Did anyone else experience this? I'm so grateful to be better; it was a rough road! However this lingering need for shakes is getting to me as I thought I'd be eating by now. I think I just needed to vent but any thoughts are much appreciated

Glad to hear you are progressing so well with your recovery! Keep up the good work!!!

The recovery phase can be full of ups and downs with a few good set backs thrown in for good measure. Being only 5 - 6 weeks posts rads, you still have a loonnngggg way to go with your recovery. Your sense of taste can take every bit of 2 full years until it is the best it will become. Most patients are doing much better with taste at about 4 months post rads with slight and gradual improvements straight to about the 2 year mark. One day something will taste great and 2 days later after the first bite it tastes horrible or it tastes like cardboard right from the first bite. This will be the norm for your for a few months.

Here is a list of foods that have a softer texture and should be easier to manage when relearning how to eat. If something doesnt taste right today, wait a few weeks and try it again. You really will get there, it just takes time. We are all impatient with the recovery process, it seems to take forever.

Easy to Eat Foods List

Best wishes!!!

Your recovery can and usually does take every bit of 2 years and at 5-6 weeks out you are really doing fine. I know the frustration of wanting things to get back to noprmal but this is not like recovering from a bad cold. Your body was taken to the brink. You were given a very high dose of radiation and if that wasn't enough, you they threw in 3 large bags of poisoned so sit back and enjoy the recovery. Do continue to pump in those calories. I consumed appx 3000 cals a day for at least my first year and I didn't gain a pound. Do continue to try old favorites because one day they may taste the same as you remember.

Have the doctors checked for any infection in the GI? Is it a certain type food you get cramps from? Constipation? Just some ideas, but maybe see your oncologists, and or GI doctor. Taste will come back, not 100%, but good enough, and takes time.

Good luck

Thanks all! It's unclear. Not really eating much food bc of taste; just Boost VHC. Was just Wondering if maybe it was somehow Rads or chemo related, but I think prob not. Have addressed the constipation issue and am off narcotics but could def still be a factor. Anyway I'm really hoping it will just pass -- seeing Rad Onc tomorrow so will see if any insight. And I know I sound so impatient with recovery. I am really working on gratitude and patience; this is just such a longer road than I truly anticipated. Some days are harder than others. I'm actually very thankful to have small kids; they keep me from fully falling apart. I'm amazed that more people doing this do not! Thanks again!

Laurie,

The thing to keep in mind is that what you are experiencing is NORMAL. You will have some very bad days ahead, heck some may be as bad as your worse days. Unfortunately that's NORMAL to our recovery. These bad days will be mixed in with good days and eventually for the majority the bad days go away and are replaced with our new normal. Your new normal will not be like your old normal and no one can predict what your new normal will be but do make every new day count as a great one.

Toddlers are a blessing. Their visits have made the journey bearable.

As discussed offline I recommend a few adventures with food. We had family dinner night last night. I pushed aside the bland soft chicken slop the wife had prepared for me and had a go at the tacos everyone else was eating. TACOS!!! Sour cream, crunchy shells! Who would have thought? I would not have had the saliva to do that two weeks ago. Maybe try a few buffet style places? Where you can try a range of different things. Medicate the nausea and keep eating, especially proteins. If your iron drops too much you'll get muscle cramps, your doctor might want to give you a blood test for that.

Every recovery is slightly different, so your mileage may vary. Its much slower than I expected but I was thinking just yesterday that a month ago I was eating boiled rice and milk. Cheer up my friend, you are doing great and have come such a long way. We're not done yet, but brighter days arent far away.

Hurray for tacos! Or for anything that wakes up the taste buds. It does help to try different things. And if you find something you like, don't buy too much of it because the next day you might not like it. Each day can bring unexpected surprises, mostly good ones. Re the constipation, my son experienced it like many do but in his case, it was related to meds. Also so many of us get depressed and anxious and need help in the form of meds or face-to-face counseling. I did and I was only the caregiver! It passes. And the moments and days do get better.