Well, as so many of you have warned, Tim is experiencing his first real "down" days. His last of 3 cisplatin was last Tuesday, and the final radiation was on last Wednesday. He had done so well with eating and drinking Ensure that he had only lost 10 lbs. But now he is fighting to drink 3 or 4 Ensure a day and is losing weight. (He only weighs 170 after stating at 185) I am experiencing all of the negative and stubborn attitude/responses that I have read so much about in this forum. The realization that the worst days are now upon us has me quite stressed, depressed, and frustrated to say the least. I have called in my "reinforcements" who are trying their best to keep us above water.
I am sharing this because it seems to help to put my thoughts down in words, and perhaps get an internet "hug" by means of some supportive suggests or comments.
Anyway.... the house is getting very clean and organized, and many art projects are being completed. LOL

It doesn't sound that bad, but rather good, if he is still drinking 3-4 ensure's, only lost 10lbs, but doctors do get concerned when 5% of your weight is lost unintentionally, so ask about that, and there are ways to increase calories, fat, protein to these drinks, make your own, and everyone's own pain is the worst pain, but it does get better. In another week or two the rope mucus should start subsiding, and he will start to feel better, less nausea, vomiting. After that, I felt best at three months, then 7 months with eating, some taste, with something different improving at each phase, and some may take even longer like dry mouth, which may never fully recover, but may be good enough, and may take some a year or two for some ailments, including energy, blood chemistry, etc to resolve, and other co-factors may be involved, making everyone different. Basically it takes time. It's not a sprint, but rather a marathon, so both pace yourself, and your expectations. Radiation keeps working just as long as your treatment lasted, so keep doing what was done during treatment, and beyond, since it does not end once treatment ended. The main thing is to be cancer free, and most everything will follow. If you have any question in recovery, of course ask your doctor(s) first, but asked here, and you may tell us something new, different.

Good luck.

Hi,

My goodness! He sounds like he's doing GREAT! Finished treatment lost ONLY 15 pounds and is only now getting a little moody? I started at #230 and ended up at #170 after 6 weeks and needed a PEG tube!

Hell! You guys are doing just fine. Look, the month or so after treatment ends is brutal. It's actually a bit worse than the treatment itself.

Keep things in check. Keep track of calorie intake, hydration and pain management and he sounds life he'll get through this just fine.

Positive thoughts and prayers,

"T"

Thank you "T"!! the encouragement is so very helpful!!
Pain management- he is only taking regular strength Tylenol and I have to push him to do that. He says "It only hurts when I swallow so I don't need anything for pain". I think they will rewrite dictionaries and have a picture of my Tim for STUBBORN!

AND Thank you Paul! I think we breezed through the first 6 weeks so very well that I am frightened by the change! Slow and steady wins the race so we will continue on!!

Count your blessings for sure. Just the use of Tylenol is incredible and shows determination. At this stage I was using 20 mg Oxycodone every 3 hours. Others will testify to much stronger meds than mine. Also I could not drink Ensure at this point. Water and a milkshake every 2 days was it by mouth. So tell Tim good job and stay patient through some tough days. Keep hydration up.

Switch from the Ensure to the Boost VHC, same small cans but with more to much more calories. This is a critical time to make sure he gets tons of calories and water each and every day.

+1 on the VHC.

While I would encourage your husband in his plan to tough this out (I credit that attitude and pursuit in part with how well I did) but stronger pain meds were a GAME CHANGER. I got on them later than suggested and took myself off of them earlier than suggested but can't imagine not having had them at all. They allowed me to rest when it was time to rest and fight when it was time to fight.

Carol, it sounds like Tim is a warrior! He should be immensely proud of himself for pushing through, but stubborn can be taken a bit too far (my parents would concur, I refused PKs for a long time until my weight loss leading up to surgery got too much).

Skim milk powder (look in the powdered milk isle of any grocery store)can be added to Ensure or whatever he drinks (even water) to boost the protein levels.

Good luck!

Thanks to all of you for sharing your wisdom!
Tina- He is a warrior! He had them take a picture of him with his "Alien Fighting Helmet" so he could post it on his Facebook page. His determination and sense of humor is awesome! It has remained almost constant until now but he is still fighting back!!
We only "found" each other 3 1/2 years ago (even though we went to high school together in the 70's), and we are both determined to defeat these invaders!!!

Sounds like me - I made my dad take a photo in ICU with all the tubes, but my thumb up!