I am hopeful I can get my husband to read some of your posts and realize HE IS NOT ALONE... He has 14 radiation treatments down, 18 to go, won't eat or drink anything, has IV fluids every other day, sleeps pretty constantly and is scheduled to see about having a G Tube placed next week. Claims he isn't in any pain currently, just depresed about the phlegm and overall ickyness of EVERYTHING. He says his fatigue is unimaginable. Gags/spits constantly and can't swallow anything including liquid meds.

I remember exactly where he is at. At 3 weeks left of radiation I crashed. Phlegm made sleeping longer that 15 minutes impossible and fatigue was consuming. Luckily I had a PEG and my husband "fed" me and pushed my meds through the PEG. I also did not have pain. Just get through it. It is almost over, about two weeks after it is over it turned around for me. I left on a trip 20 days after treatment ended and felt better each day. I am now 8 months after treatment and I feel great.

Welcome to the board, Shannon. I hope you get Jim to take a look. It really does help seeing how others have gotten on with life after those brutal treatments.

Shannon,

I'm three months out and feeling a great deal better. I remember those radiation days very well. Lots of sleep and laying in bed which is ok from here on out. Keep the nutrition and hydration up even when he hates it. It will give him the strength he will need to finish.

No pain is good....Have Jim read and post here if he wants. It's the only place I found where people understood what I was up against.

Kelly

I am just about 2 1/2 yrs since the 1st surgery and I am just now getting my energy back and feel great. As for the phlem, I just spent 2 hrs in a new type MRI and they did it 7 times. The phlem was so bad I had to swallow and not one pic came out. I understand about eating, but it's something that has to be to survive. Get you nan on here to read what others go thru and maybe he will realize he ain't alone.

Shannon,

It is imperative that you MAKE him, if necessary, consume 3000 cals and 48ozs of water each and every day EVEN if he is getting the IV's.

Speaking from painful experience here, if he thinks it's bad now he will make it far far worse by not keeping up with my recommendation above.

He will go thru a few stages including the thick stuff which will give way to a dry mouth condition but tell him this is all just part of the Tx.

Hi Shannon

Welcome to OCF. If your husband doesnt want to get online, you can always print these out for him. He is at the middle point where he is starting to see the effects of treatment.

You have been given some very good advice from David about drinking and nutrition. Thats what will make the difference in his capability to bounce back. He really must drink a few swallows daily or it will be so much worse down the road. Another very important thing most doctors dont tell people is to stretch their mouth open as wide as possible several times per day.

He must get nourishment daily somehow, this is one reason he feels so bad. If he isnt taking anything in, he will end up malnourished and dehydrated which will put him in the hospitil. He will feel much better once he increases his intake.

Musinex will help with the phlem. Meds can go down the PEG tube just make sure you rinse it before and after giving meds. Hope he gets the peg tube very soon.

Best of luck with everything.

Christine, I was taking mucinex and the Drs told me to stop it for some reason. I hope her husband can take it as you are right a rain in what you say. Listen to Christine and the others. We have all been where he is and survived with some types of nourishments.

Hey Shannon,

Good advice above and there is a light at the end of the tunnel for Jim. I was able to stay on my feet, doing lectures and odd tasks up until the half way point, then I climbed into this lazy boy chair and didn't move except to go in to the clinic and the dentist.

The pain I had was SWALLOWING and a horrible mouth. Onery as they come, I started to hit the pain meds hard just before umm "meals". Not even water would go in without morphine. Only once needed IV fluids that I recall. Using a vaporizer seemed to help keep the airways clear. Tell Jim "Just say YES to da drugs" if he will feel more comfortable.

By mid summer I was DRAGGING myself around the Cascades with a chainsaw helping an old friend clear downed trees. Complete with suspenders and bailing wire, cuz I didn't own pants that I could keep up, not even the ones from high school!

Almost 3 years since DX now and things still improve. Not back to normal, but getting close. People walk up to me on the street to say "Whoa, I heard you died! But here you are, and look pretty good too."

Eating better and gaining weight, finally thinking about scrounging up cash to hide in the mountians for a while this summer... However, the endurance and strength haven't quite returned, yet.

Now if it would help, I could put on a cheer leader outfit, dance around and cheer: Go Jim! Go Jim! Go Jim! ... But I think if YOU did that, it would be a much better visual for him. [{;-)

Hi Shannon and welcome to OCF. I hope your husband considers checking out the posts here. I know when I realized I wasn't alone it changed everything for me... I felt so much better. I have not had radiation but I know from reading here it is so important that gets calories and water.

I've had 4 partial glossectomies and after my 3rd I hardly ate or drank anything. It just hurt too much and I was mad. When I went to the doc for my follow up he said, you either drink at least 6 cans of Ensure a day and a lot of water or I will keep you in the hospital. As soon as I started to "eat" I felt much better and started to heal much fatser. I know my story is on a lesser scale but I think the fundamentals are the same. Our bodies need nutrition and water. Does your husband have a PEG?

If your husband isn't up to getting on the computer at least you are here. The caregivers need as much support as the patients.

Shannon

sorry you had to join our little club, but welcome. I concur with all the advice given you. Even if your husband is too stubborn to join OCF or log on, you can and should use this to vent all your worries and frustrations as a caregiver because this site has the world's BEST caregivers along with the feistiest patients. Actually my personal opinion is that the reason so many of our posters are female caregivers rather than the male patients is twofold: First the classic male desire to "do it on my own" (shown in the aversion to "asking directions ")
Second, if he logs on here whining and moaning about how "no one can imagine the fatigue", he would shortly find out that his troubles are anything but unique. In fact, he would find out that many people had it worse without feeling so sorry for himself. We are sympathetic but posting regularly on OCF is the only known cure for "self-pity" parties.
The good news is there is reason for HOPE. We all did it, and you guys can too
Charm

welcome shannon.

i cannot get my hubby on this site either. although i know how great it would be for him.

i relay all the info i see here to him, so its all good. plus this gives me a chance to rage and vent and "cry" without him seeing it. i can post my worries and concerns here knowing he will not see them. and what follows is great advice and alot of support. caregivers need this site as well as patients.

this site will help u keep informed. that is key to caregiving.

come back often, and keep us posted on his treatment.

UncleVern must be a tough old dude. Get your hubby to read his post above.

Moving at his-own pace, and weighing in at 188 pounds. 'THEWPAH NERD' blows by like a blinding... wisp of gas. Fully charged with NERDIA-LITE coffee, the days' goal is to bottle 5 cubic feet more of the coffee based artificial enthusiasm...

More stubborn than tough is more like it... My RO was pushing HARD for me to keep the metabolism as high as was possible. Some of the stunts were a bit stupid, like getting stranded in the cascades sinking my van in the mud and ice the day after having the port put in my chest. He was thrilled at the idea that I had to pack gear up to the shelter to survive the night, others quite appalled.

The coffee based nutrient drink, special blend of high density liquid food, cream of wheat, eggs and MORPHINE was the trick. Now let�s get realistic about this� The morphine WILL slam the brakes on the metabolism and there was a price to pay in the form of a stalled digestive tract once the patches were not enough and I started in on them �little blue pills�.

Knowing what was to come, I shoved my weight up to near 230 pounds before TX, ended that adventure a little above 150 pounds and spent the week after the final TX floating in the tub and wondering if I had actually made it.

Everyone has a different experience, different environment and different ways of dealing with the challenges. Mine was to slap it in the face with humor and refusing to recognize some stupid cell�s right to change my life, maybe just delay it a bit.

The stunts and chaos that I caused in the clinics, hospitals and area stores got me the attention of security, law enforcement and more than one staff psychologist. All these, a desperate effort to find the humor, keep my attitude positive and educate insensitive and over sensitive people.

Please have a look at the other stuff that I wrote here and print anything for him that you think will trigger a smile, laugh or an energizing stunt at the local �Wally�. There is nothing more gratifying to me than making someone�s day a little brighter.

VC

Uncle Vern.. you sound a lot like this old guy. I never listened to the Drs either and tossed the morphine plus a few more. Sure My mouth still feels like the team with the steel spikes playing a game of soccer or football in it. But the rest of me feels like about 17 or 18. I take muscle milk an hour bnefore I work out and it seems to help a lot. Wish it would add some of my 220 lbs back too. I cleaned a couple of inches of snow out of my driveway this morning and then put ice maekter on it. Cleaned my daughters car off I am selling for her and then cleaned the garage and washed clothes. LOL Mabe I am just hyper. Tell your hubby to read Vern'st and maybe even mine. We want to live and act like we do. There are way more than us on here like Charm, Christine and alot more. We are all toughies here and tell him to join us.