I called the RT-Dr and they said Tim really needed to come in today, so he would have 2 days of RT before weekend break. That one day would not be good. I put my 'nurse from hell' hat on and He is going to RT this morning.
He is pretty mad....I am going to try to leave him be and not make eye contact for the next couple of hours.

Way to go, Michele!!!! Tim is probably feeling so lousy right now that he cant understand that by not going he is putting his life in danger. So glad you have convinced him to go! Ask for hydration today too and he will feel better immediately.

Good luck!!!

Awesome!!! Way to put your foot down. It's only four more weeks of sheer torture for the potential "you're cured" and the opportunity to spend the rest of your life together. Was his cancer HPV + ? You say base of tongue, but based on the surgery he had it sounds more like Oral tongue. If it is HPV+ the cancer responds more readily to chemo and rads... so tell him that. Tell him this is temporary but necessary torture. And while I know he only has two more weeks of treatment, the two weeks after are the worst (do not tell him this!!!!) Then things slowly improve.

take care and god bless.

Michele, you've heard from the best, and they're all right. You MUST be as strong or stronger than you've ever been for him now. The last week of radiation is a bleak time, we all know that, but it's absolutely essential to his recovery. In a few months you'll both look back at this with gratitude. I know you have what it takes to help him through this very difficult period. And we're all here for you too.

Courage!

Oh and hydration is a must. I went in three times during rads just for a bag of saline, and it was a lifesaver and gave me an amazing physical lift each time that lasted for a good 3 days.

That's a good idea about printing out any responses that you think might help Tim. I did that a lot when my son was at the worst of his recovery. I didn't push him to read stuff, but I left it by his bed while he was sleeping (he slept a LOT) and I could tell later that he had read the OCF posts and was encouraged. It is difficult for a survivor to have to allow someone else to have control over a situation when you are so used to being in control of your life and it seems like everything is out of control. Maybe you could find things that he can control like asking him what TV program he wants to watch, what does he want to wear to his Tx, does he want the light on or off, etc. Stay strong, Michele - and stay with us. Let us know what's happening.

I can't add much to what everyone else has said. We caregivers totally get where you are. It is SO hard near the end. That is the time I found the forums as well and, like you, this is where I found my strength.
Good job today! Click the days off one at a time. Encourage him as much as he will let you and get mean when you have to. He will thank you later.
Another thing I did was sneak a letter to some of his friends and told them he was giving up and could they please email him. The next couple of days his attitude completely changed as he felt their encouragement and realized that even people outside his immediate family were rooting for him.
Please know that the next few weeks will get even harder. I hate to reiterate this, but it's the simple truth! Getting the extra fluids through the port helps tremendously!! Honestly, we thought once we were done with tx he would start getting better. It got worse for the first few weeks, then improved daily from there.
The burns will probably get much worse. Just keep up the Silvadene. Kevin's neck is soft as baby skin on his neck now!!
One thing our RO did was put Kevin on daily dose of Diflucan. It is was they give us women when we take an antibiotic to help fight a yeast infection. He still got the mouth sores, but it seems not as bad as some others.
Best of luck the next few weeks. Please know you will be in our thoughts and prayers. Several of us watch the posts daily, and actually several times a day, so vent when you need to, we understand.
Blessings,
Kathy

Today went better than I expected...I left Tim to himself to collect his thoughts. RT went fine, he was very quiet...writing me a couple of notes to tell techs some things..(he can't talk & able to swallow very little since RT kicked in 3 weeks ago). We got home, Tim & I both got all things done with his daily routine (trek, lotion, meds, nutrition, power-aid/water, and a big kiss on the forehead (one of the few places I can kiss) & a tap on his foot...then I had to go to work until 6:30. I got home and he was in pretty good spirits...considering. He sleeps in his recliner since his surgery because of trek/swallow....it just works for him. And I sleep on big couch next to him. We are both exhausted tonight and hopefully will have a positive day tomorrow. I sent out our weekly update to our close friends that have asked for updates; and they usually send Tim uplifting texts/emails. Allot of times we get a small text or email saying "sending you a Big Hug!" and it really does help sometimes.
I am hoping the Dr will give him hydration tomorrow. I am picking up a refill for his thrush (Diflucan) along with his other meds.
Thank you...it means allot.

So glad things went better today, Michele - and that Tim was in pretty good spirits. It's great that friends are keeping up with him. Those emails even when it's just a couple of words really do help! You are doing a great caregiver job. I remember how busy I was with my son and his treatment and being retired, I didn't have a job to go to. I hope you are getting enough rest and letting friends or family help you out with things. I remember those kisses on the forehead that I would give my son, too. He seemed to hurt in so many places, I had to ask him first before giving him a hug or a kiss. Take care of You, too!

Sounds like it was a really good day. Thats so encouraging isnt it? Im very happy to see Tim is being compliant and doing what he needs to do. Way to go, you are one heck of a caregiver You should be proud of yourself for doing a great job.

Michele - I stumbled upon your post - and it couldn't have come at a better time for me. I am a caregiver for my dad and he is in a very similar place in treatment - near the end but really struggling to get to the finish line.

I've been struggling as the caregiver too - and probably part of it is bc he is my dad - it is hard being so firm and wear the "nurse from hell" hat to a parent. But I did it about his nutrition on Friday - we didn't really speak for a few hours, but he doubled his intake that day.

I pushed again this morning and got him to another rad session.

Only 4 more to go - and you Michele and all of the folks who responded to your string - have given me the reinforcement I needed to keep pushing.

I also sent an email to his friends asking for increased outreach this week. I know hearing from other people makes a difference.

So thank you all for helping another caregiver! And stay strong Michele!

Alicia