Hi, I'm replying to my own post, here. When I said earlier that if he wanted me to dole out his meds he needed to do some things I am asking of him I did not mean I would deny him his medicine. I would just ask that he take that responsibility over for himself.

On a side note...he is being a little more cooperative today. Probably because I told him how angry and frustrated I was this morning (yet again.) But this time I told him I didn't know if I could be the caregiver if he wouldn't cooperate and particpate in his own recovery since it's obviously not working for him or me. We'll see what happens...he did let me give him 6oz water and a high calorie can of 'gunk' in his feeding tube. And he did go for a walk with me this afternoon.

He did start an anti-depressant last week. The effects of those can be so subtle, though, depending on the person. Hopefully, it will help in another week or two. But if he isn't taking nourishment, water and moving he'll be really sick by then. Again, thanks for listening.

Kendall

Kendall
you did not come across as a "Kathy Bates" especially if one reads more than just that line you mentioned above.

M

Kendall,

My heart goes out to you and to your husband, it truly does. Facing cancer, and the harshness of treatment, has got to be one of the most difficult tests of a person, not only for the patient, but also for family and friends. I'm so glad you've not only reached for help here, but that you're going to that support group.

I wish I could give you a hug.

- Margaret

Kendall-Hang in there. As a fellow caregiver I can tell you that my husband was a real PIA in the beginning. He is about 9 months post radiation and is doing better. He is on a trial drug now and seems to be really better mentally now. The only medication besides the trial drug he takes is a Fentanyl patch for pain. He was a real nudge when it came to nutrition at first but now he is really on top of it. He mixes a can of the Jevity 1.5 and a can of VHC and takes it thru the PEG several times a day. Things still don't taste right and he doesn't have teeth on the bottom so this is the best way for him. He uses the pump and is quite used to it now.

Sometimes tough love is the only thing you can try. I'm hoping that you will get some insight from your support group. There are also many of us here that understand. Stay strong!

Sue

One thing to mention - the carnation vhc has 560 calories in a tiny 8 oz can ... easy to get down so in 5 cans a day he would be getting some good calories. You mentioned he does not like vanilla - my brother said he mixed in chocolate syrup with the vanilla ones and they were great. ... you may want to try this! nice part too is the VHC your medical may well cover it for you, which helps the pocketbook.

i sure hope things perk up for ya. it is so hard when you love em to pieces, want them to get better and they just won't do what is needed. you may need another nurse or aide type person to come in like once a week to lay down the law with him so you ar enot having to be the bad guy ...maybe he would listen better? not sure if this is possible but thought i would mention it in case.

hang in there hon.

After my surgery I had a very hard time being on a liquid diet and lost a lot of weight. I tried them all, boost, ensure, carnation...ect...ect...What helped me was I started mixing them with vitamin D milk...they went down and tasted better. I was able to consume more and in return I started to feel better. Shortly after, I started to crave soup...I was only able to eat broth...then I slowly added diced tofu. Since then I'm back on solids gained my weight back and I'm ready for the radiation part.
But, I did not start to feel better until I was hitting the 2000 to 3000 calories a day...it was hard... and carnation made it easier to hit that mark...after that...I felt like I started to heal a lot faster...In fact, my girlfriend had to tell me to stop the carnation..that I was getting a little chunky...Hopefully, this will help a little...Tell your husband a lot of people are thinking of him and wishing him well...

Kendall . . . we all know this is very difficult but as pointed out he has to have the intake. He's got the peg and it was a lifesaver for me - use it. My mouth was so messed up after 10 tx that I could only swallow small amounts of water and that was a pain. I poured 2500 calories a day down, plus some water, plus all liquid medications for 3 months. I couldn't stand the taste of Boost and the other stuff either but one way or the other your body must have support - particularly now. Tell David there's a light at the end of the tunnel which will get brighter with time. Good luck.

Thanks for your support. It really does mean the world right now.

So, I'm getting the picture. Get the Carnation VHC. I ordered a case from our pharmacy today and they will have it in by tomorrow afternoon. I ran the idea by David first, mentioning that it was vanilla flavored (which he doesn't like as most of the vanilla stuff tastes like coconut to him right now and he hates coconut.) I mentioned the idea of adding chocolate syrup (extra calories!) and he said to go for it. Even if he doesn't care for the taste it can still go into the PEG.

He has been behaving better today, as far as eating goes. I sound like a mother...wait...oh yeah...I am a mother (we have two teenage daughters.) He actually went in the car with me to buy some cases of Boost+ and carried them into the house.

We'll see how long before I need to stomp my feet again. I need to learn a more graceful way to do that.

Again, thank you so much.
Kendall

If there is a problem getting the VHC, consider Nutren 2.0, also by Nestle but 'approved' for PEG feeding and has 500 calories per can -- I think it only comes in Vanilla.

Christine is right about using the pump at night, set on very low speed -- Per her advice (Thanks, Christine!!), I've been loading two cans plus some extra water and an occasional dose of Ranitadine, with the pump set at 75 ml/hr and that has been working well for me. That's a lot slower than gravity feed and I don't notice it.

However, it's really good that David is swallowing his food because that will pay off down the road, and the walking is also really good. Keep in mind that recovery from the nuking is a very slow process and certainly has it's ups and downs.

Try not to pressure him too much as it sounds like he's the type that the harder you push, the more he resists <grinz>.

Hello,
I thought I would give an update on David's situation. I've been computer challenged the last month or so (no laptop and competing with everyone else for the computer.)

David is doing better. I did have to go in and basically stomp my feet and wave my hands around to get a psychiatric diagnosis for him (as opposed to a prescription from the oncologist.) After three weeks on the first anti-depressant he was worse, not better, then when he started taking them. He is on a different med now (Wellbutrin) and that seems to be a much better fit. Plus, he was given some exercises, both physical and mental to do which seem to be helping his outlook.

He is back to work 3-4 hours a day, with a tentative plan to work back up to 8 hours a day by Nov. 1st. He is getting a little stronger each day and his personality is coming back. Yay!

This timetable seemed feasible until we got the results of a Petscan he had yesterday. There is no evidence of the primary tumor, but there is some 'suspicious activity' around the left side lymph node area. So...we are waiting for a call from the ENT specialist to see what is next. I suspect selective neck dissection surgery, although it would be nice if he did a biopsy first to see if it is really necessary.

I am learning to surrender to this journey, as I think it doesn't ever end. Thank you for all your support a month or so ago. It really helped me through this tough time.

Kendall