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!

You could also consider a nasal tube for a few weeks. Simple non surgical, no pain "insertion" where they feed the tube up his nose into his stomach and then x ray to make sure it's in proper place. I used one PT for 2 weeks and pulled it out at home myself. Made a HUGE DIFFERENCE to my recovery.

Just an update- Tim is improving now every day! Yesterday he even ate some mashed potatoes with gravy, and a small bite of chicken. We just returned from the oncologist and he does not need to see him for 12 weeks. What a fighter this guy is!! He is currently at 170 lbs from his start of 184 lbs at the end of August. He is still taking extra strength Tylenol every 6 hours for "discomfort" but the nausea is subsiding each day, and taste is starting to change slowly. Sweets (especially chocolate) seems to be the strongest right now.
So..... THANK YOU ALL again for helping us through this, and your continuing support as we keep marching on in this journey!

Way to go Tim! Eating human food will make hugh difference both mentally and physically. At that time, I ate a lot of cream of wheat and soggy cereal and milk. His chewing muscles have taken a beating from inactivity ad rads. Have him keep stretching his mouth wide as he can, many times a day. He will need to do this for the next year or so.

He's doing great and things will slowly improve but do watch out for some bad days mixed in here and there. They are very normal and are not to be considered a setback. Watch out for the chicken as that, especially the white meat. Try moist meats like ham steaks and do use gravy on everything. Calories and water are just as important now as they were during Tx.

I know its hard after treatment in that you KNOW you are done with it but physically you really arent't - hopefully he will heal quickly after the horrible two week period. He did very well up to now so it sounds like he will - hugs.

This is the beginning of the 3rd week post chemo and radiation. Tim is making small improvements every day now. He has increased his protein drink intake, and is almost up to the minimum amount of calories that he needs. His throat has improved to the point that he can swallow fairly normally when drinking. AWESOME!! He is not taking ANY pain meds (except a Celebrex for arthritis).
He has tried to eat a few things but the taste is just not worth it. I have encouraged him to keep trying something everyday because you never know what might make the taste buds respond.
He is very tired and is growing impatient with that.
I am encouraged to see more good days than bad now, and he is taking more steps forward than steps backward.

Great news with the recovery progress! Its a long drawn out time full of frustrations. Recovery can take months. The good days will soon outnumber the bad ones and the fatigue will slowly fade away. In 3 more weeks, he will be so much better than he is right now.

Keep up the great job on swallowing and drinking!!! Milkshakes and smoothies work very well during this phase.

Keep up the good work!!!

Way to go Tim. You just passes the bottom and finally things will start to improve. Over the next month, things will improve a lot. I found that salt was the first taste to recover. I found myself wanted to taste anything so I ate a lot of salty stuff. For the next 2 months you are still in the Thrush zone so watch for that. Ask your doc's if rubbing his neck and throat is ok. I still have my wife rub mine and I find it help a lot.

Hi Everyone! I thought I should share some EXCELLENT news! Tim's taste buds are recovering every day! Right before Christmas he decided to sample all of the wonderful foods at a party and FINALLY he discovered remarkable improvement! For the past week he has been trying many foods and actually enjoying them! His weight loss stabilized at about 3 weeks post treatment for a total of only 15 lbs. With no feeding tube!
He is now having just some dry mouth, and hoarseness. The back of his neck is totally hairless (he has let the rest grow to cover the 4 inches of hair loss)and it is only apparent when the wind blows. LOL!! He will have a PET/CT in the next few weeks, and we are hopeful that it will be good news!

Oh, I am so jealous of Tim's taste recovering. I only finished radiation last Friday, so my taste is still gone and I've got a mouth full of mucositis and rope saliva to go with it, but the throat feels okay and I can swallow.

But, what I would give right now to be able to taste the foods Tim just enjoyed.

I just read your thread for the first time and I agree Tim did great throughout it all. That's a real tribute to his strength and determination. It could have been so much worse.

I'm trying to get the hair on the back of my neck to growing again too.

take care,
Tony