Ed,
I also thought that I was undermedicated as I took a lot of morphine and Vicodin to supplement the patches. My throat was pretty much like yours. They can actually go up to 300mg with the patch(s). I looked at the DEA website for controlled substances a few weeks ago and Fentanyl is AKA "China White" - no wonder it worked so well...

Don't forget that all of those narcotices will also cause severe constipation issues so be sure to have a plan for that also.

Wow, thanks so much for all the help. The Duragesic sounds good and the suggestion of anti-depressants is also good, although I know my Dad will be very resistant to the suggestion.

It's not that he's abusive so much as just withdrawn and non-compliant in terms of swallowing and eating, and then, when pushed, he just gets really grumpy. My Mom has even considered getting an outside caretaker so that she could remove herself from the mix! But although she threatened that once, I don't think she'd carry through with it.

It's also very helpful to hear you survivors talking about what to expect over the next month or so; this is a motivator for me to push hard for the meds you suggest.

Thanks, guys. This forum is a god-send!
Eve

Wow, thanks so much for all the help. The Duragesic sounds good and the suggestion of anti-depressants is also good, although I know my Dad will be very resistant to the suggestion.

It's not that he's abusive so much as just withdrawn and non-compliant in terms of swallowing and eating, and then, when pushed, he just gets really grumpy. My Mom has even considered getting an outside caretaker so that she could remove herself from the mix! But although she threatened that once, I don't think she'd carry through with it.

It's also very helpful to hear you survivors/caretakers talking about what to expect over the next month or so; this is a motivator for me to push hard for the meds you suggest.

Thanks, guys. This forum is a god-send!
Eve

Hi Eve! Ditto everyone above. Definitely get the medical team and nutritionist involved. Let them do the pushing. I was my husbands 24-7 caregiver. He was much like your dad, refusing to use his PEG and didn't want to take any medication, etc. Sometimes, my husband wouldn't do it for me, but he would if the doctors insisted.

The only thing I'd like to add or comment on is about what your mom is going thru herself. So many times the emphasis and attention is on the patient; the caregiver is taken for granted and feel left in the cold. We as caregivers do all we can for our patient, often ignoring our own problems, feelings, and health just to make life as easy as possible for the one we love. But, we too become tire and stressed. Even though we understand all the reasons why we are being snapped at and why the patient is irritable and grouchy, it can often be a challenge to keep our thoughts to ourselves and not snap back.

During my husbands 6 month treatment, it seemed like I couldn't do anything right. Normally my husband is generally an easy going, kind man. But, under these circumstances no matter how hard I tried, I couldn't please him or make him comfortable. I knew it was the situation and pain making his this way. But knowing this didn't always make it easy. For the most part, I think I held my peace pretty well, but there were a couple of times that I snapped back at him when he was giving me a really hard time. I hated myself afterward. After he completed his treatment, we both made apologies for anything said under direst and recongized the effort and struggles the other went thru. In some crazy way, this has even brought us closer.

My point is this: Don't let your mom be too hard on herself if she isn't always the "perfect" caregiver. She is human too and has to be just as forgiving of herself as she is with your dad. I'm sure that when THEY come out at the other end of all of this, the anger and frustation will be forgotten and only the love will remain.

Hugs and prayers, Vickie

Eve,
I too thought I'd tough it out. Didn't want to get hooked on painkillers. What an idiot I was!
A very caring and experienced Oncology nurse put it to me this way. "Your cancer won't go away any faster by you being in pain, and you will impede your recovery by not getting enough nourishment and hydration, so you'll just hurt longer," Once we got the pain under control (and I got up to the 125 microgram patches, supplemented with liquid morphine prior to meals), I was able to get adequate fluids and nourishment down. Addiction is not an issue. There is some withdrawal as you wean off of the meds, but it is nowhere near as unpleasant as going through this without the medications. The next few weeks can be brutal. He needs to get the pain under control and start eating.
It WILL get better, but how long that takes will be affected a great deal by how well he takes care of himself.
He will come around to appreciate the love and caring that you all have shown. Be patient.

Good Health

Chuck

Unfortunately, he's not really willing to do the additional meds. I mentioned the patch to my Mom (who's an MD) but Dad (who was a pharmacist!)said no way, and he also said that he wouldn't try to swallow and got really angry and defensive when I tried to talk about getting nutrition that way. He won't even allow us to broach the issue of anti-depressants. At least he's using the PEG more -- although he also said no to the pump, which would have helped a lot, since we're convinced he's using the PEG too quickly and that's one of the reasons that he has pain with it.
So, tomorrow is the last chemo, so maybe he'll manage to get the full dose and we'll see!
Meanwhile, I'll keep (gently!) raising the issues of pain management and swallowing and see if we get anywhere!
Eve

Eve, I am jumping in here late, but let me put in one more plug for the Fentanyl patches. I took nothing until my neck was raw hamburger. When my stubborness sent me into shock, I relented. Those patches are a miracle, plain and simple. I had no addiction, no withdrawal problems, and if constipation was an issue, I don't remember. I know I put fruit juice down the PEG, so maybe that took care of it. At any rate, your dad has absolutely nothing to lose by trying the patch. Morphine does a number on so many people that I didn't even try it. My vote goes for the patches and if I ever have serious pain again, you can bet I will demand them. Please tell him from me, a former patient, that I didn't know how bad I was hurting until it stopped. I am probably the most anti-medication person you will ever hear from, but Fentanyl patches saved my sanity.

Please don't take this the wrong way, but I can't think of any other way to say it. Has anyone tried telling your father that he's being unreasonable? Has anyone shown their frustration with him? Or is everyone tiptoeing around him?? From your posts it's obvious that he's used to being in charge and making all the decisions. Might do him some good to be allowed to suffer in silence and alone, a place where his stubborness doesn't affect others. By no means am I suggesting being cruel or insensitive to anyone, simply saying it's time to let him know that enough is enough and point out his poor behavior. Who knows, might work.
Wishing you well with it!
Minnie

Minnie,
I don't think you're being insensitive -- family dynamics are part of the problem, I agree. But I can't say that he's being unreasonable, just resistant/non-compliant, and he already knows full well that he's being that! This is what is so frustrating: we feel that we can't push him to do things he doesn't want to do because it's his disease and his pain. We're just hoping that if we make these suggestions and continue to push him as much as possible, that he'll eventually respond (or not, and then, as Karen suggests, the hospital will be the place where he sorts this out).
I'm going to print out what Ed, Gary, and others had to say and hope that other people who've gone through the same thing will have more standing in his eyes.
thanks again for your help, all of you!
Eve

Eve,
The problem with your father's attitude is that it is going to delay his healing and may also cause some permanent damage. Try USE IT OR LOSE IT on swallowing. If the only reason he cannot swallow is because he isn't taking some pain med, he is being very foolish. He should at least take water or other liquids to keep his muscles moving or he could find himself with very serious permanent side effects. If he refuses the patch, will lidocaine or something similar numb the mouth and throat enough to allow him to swallow? He's a phamacist. If he doesn't like what the docs are prescribing, is there something he is willing to take?

He also needs as much nutrition as he can get so if not taking the pain meds are effecting that it will only take him longer to get back to normal. Get the doctors on you side and see if they can convince him that he is actually harming his chances for recovery by not taking the pain meds.

Eileen