I'm not sure whether I'm writing this to vent or ask for help; probably a little of both. My Dad was diagnosed with SCC of the tongue in November (which had metastasized to the R lymph node) and is now going through the horrid treatment with which you all are so familiar. He's got great doctors and care, and he's so close to the end -- 7 more days of radiation and one more dose of chemo this coming Tuesday.

Of course he's in terrible pain and is really declining. What is most difficult to see is to watch how withdrawn he's becoming -- and recalcitrant. He is not eating AT ALL, refusing to swallow b/c it hurts too much. He hasn't been using his PEG, either, though before the last chemo treatment they had to hydrate him for hours before they would give him just half the dose. He is so withdrawn into his pain and suffering that he sits/naps all day and night, and generally snaps at my Mom when she tries to help. She is worried and so pressures him to get Ensure through the tube and tries to coax him to swallow something, anything. But he then takes his anger and frustration out on her. How can we reach him? Is he to be reached? Are our worries/anxieties fears our own that we just need to keep to ourselves?

So I guess my vent is: why should he suffer so much?
And my questions are: is this "normal"? Is there anything we can do to help him without become yet another source of stress to him?

thanks!
eve

hello Eve,
just remember the darkest hour is just before dawn, my last week of radiation and the following 2-3 weeks I was miserable and was a bitch to my family and all the were doing was trying to help and comfort me, all this during christmas week. He should try to use his peg , although I slacked off at this time also. gradually I came around and started feeling better and trying to eat a little more daily, increasing my food intake, then had surgery on january 11 and felt that was another set back, finally about two weeks ago I had my peg tube removed and can eat most things now, my taste has returned about 75%, I still have some difficulty swallowing and have to cut my food into very small bite size pieces, and still cannot eat some things, pork, chiken, beans and bread they are all to dry, and I go to bed with a bottle of water every night, that being said I am improving every day and so will your dad, just keep encouraging him, and never forget to tell him how much you love him, and understand he needs a bit of space to be bitchy because in the end he must close his eyes every night with his thoughts and it can be a living hell, he needs to read and participate in this form, this place really got me over the hump and it was a god send to have found this place, I have passed this sites info on to all of my doctors to pass on to future patients, your da needs to be here it will work wonders for his recovery. Hang in there my dear Eve, thing s have a way of working out even with this dreaded illness.
always lenny

Eve,

Your dad should be getting good enough pain meds that he isn't "in terrible pain". If whatever they are giving him isn't doing the trick anymore, someone may need to advocate for him to get a higher dose or get something different. I was severly uncomfortable from all the phlegm and nausea and fatigue during the last few weeks of treatment and the first few weeks after treatment but I was never "in terrible pain" except when I managed to sleep for long enough that the pain meds had worn off all the way-- in which case I would wake up in agony.

That's the other thing, even if he complains, if he is taking pain meds that need to be taken every four hours or something, he should be sure to take them exactly that often, even if he isn't in that much pain at the time, because it's harder to control the pain once the medication has worn all the way off.

Some people try to be very stoic about pain and the only way you know it's bad is that they are extremely irrtable, your Dad may be one of these. See if you or the medical oncologist can really talk to him about how bad the pain is.

As for the food, I had quite a problem with that too the last few weeks. I was so nauseated all the time and the pain meds don't help here since they kill your appetite and constipate you. Another thing someone needs to be talking to him about. To be blunt, are you or is someone keeping track of his bowel movements? Espeically if he's using Ensure through the tube, which doesn't have much fiber, he should be taking a laxative and a stool softener every single day. Constipation alone could be *causing* the nausea and pain and the feeling he doesn't want to eat or drink anymore.

I feel badly for your mom--that he is taking out his unhappiness and pain on her. But she needs to understand that he's just going through real hell right now and try not to take it too personally--and keep trying to take care of him, get him pain relief, get some fiber down him and get him to eat and get fluids. Hopefully she can also find some support people for when it gets to be too much for her so she can get a little rest.

And it will get better soon! Even if that seems hard to believe right now.

Nelie

Eve, Being a caregiver whose husband has been in the exact same situation, I can suggest that you print these posts out for your Mother to read. She is in an awful position-I know- and she needs lots of support right now. It is a no win situation to watch your loved one suffer and know that you can't fix it, and no matter what you try, he just gets furious. If your Dad doesn't start getting nutrition , he is likely to be back in the hospital. That, at least, would be a break for her. Having the nurses and Docs care for him would take a tremendous burden off her. Someon in the family might explore with his Doctor having him admitted for a few days to try to get him back on track. I'm pullin for your family to get through this. Amy

Hi Eve,
There is no definite answer to your question of why you dad suffers so much. We all suffer once cancer knocks at our door. However, I would say that your dad shouldn't be in great pain if he is prescribed with pain killers and if he takes it regularly. If it doesn't work, maybe he needs to be hospitalized so that his pain can be properly managed. The psychological suffering can be more difficult to deal with at this stage and I can fully understand the traumatic situation your family is in. People here are very willing to share their experience and I think professional assistance from medical people is very essential. I don't know how old your parents are but you need to watch out the health of your mother as well.

Karen

Amy, Nelie, Lenny,
thanks so much for your help. Your posts are a great comfort!
As for the pain: he's pretty resistant to taking any morphine at all. We all push him to take it, but he is just one of those stoics. He didn't even take any pain medication when they pulled some teeth for the IMRT. It's a source of pride to him, and I know it gives him a sense of control, but at the moment that's undermining him.
As for eating, he won't swallow anything -- says the pain and phlegm (and the bad taste of everything) make it "impossible" to eat. But at least now he's reporting to be using the PEG to get some Ensure down.
I know you're all right -- this is just a horrible time, and he's doing what he can. So thanks for all your support!
Eve

Eve,
He is suffering because he chooses to. Pain management (and the need for it with cancer patients) is well understood, there are NCCN guidelines how to deal with it and proper pain management will dramatically improve and shorten the healing process.

The worst is yet to come. I didn't hit bottom until 3-4 weeks post treatment. I can understand his anger and abusiveness. The treatment is very brutal but he must allow the doctors to manage his pain and get adequate nutrition and fluids or he won't make it. He may also need meds for depression, which commonly manifests itself as anger, particularly in men. Anti-anxiety medications may be helpful also.

You HAVE to force yourself to eat - fortunately this doesn't last forever - you CAN get past this and a month or so after he's done with radiation his taste buds should start returning, albeit slowly. This is where you have to get into the fight.

We have seen this happen before, mostly with elderly patients. This is the time to swallow the pride (not to bring religion into this but it should be no surprise that "pride" is the first of the 7 deadly sins) and listen to medical advice. Let his doctors know immediately the situation you are dealing with here.

Morphine is typically used as a fast acting "short term" opioid for breakthrough pain (it takes about 30 minutes to act - in pill form). Occasionally some people respond strangely to it and other meds may need to be tried. For ongoing, day to day, pain management he will need something like Duragesic which is a "long term" opioid in the form of a 72 hour time release patch. I had to take 2 morphine tablets just to be able to swallow water! (and that on top of the 75Mg of Fentanyl (Duragesic) that I was taking)

You HAVE to get his doctors, especially the MO, to enlighten him as to the benefits of pain management.

Like Karen said, your last resort may be hospitalization - maybe that's the convincer he needs to get with the program.

Tell your mom to be patient, get some respite support for her own sanity and he will feel SO BAD for the way he acted she can look forward to his making amends for quite some time once this is over (I bought a wife my wife a new BMW to make up for it ;-)

Eve,

Gary is right that the worst effects can show up in the weeks after radiation. Food and hydration (whether by mouth or by tube) are absolutely essential, and your father can't be making decisions based on what does or doesn't taste good. When I was going through radiation, pain management wasn't what it is today, and I remember screaming my lungs out while I forced down water, smoothies, instant breakfast, pudding, and anything else that would slide down and get my daily nutrition quota into my system. I didn't have morphine tablets, but I did have "swish and spit" mouthwash that numbed the lining of my mouth for 10 or 15 minutes at a time and helped somewhat to deal with the feeding process.

If you and your mother are at your wits' end trying to keep him nourished, you probably have to enlist help from his doctors/nurses to deal with the situation. I hope you can get him to focus on the fact that he needs to do this for awhile so that he can start to heal and then actually start to enjoy food again.

Cathy

Eve,

My mom was very anti-drug pain medication etc.. but it became unbearable for her. She did not like the medicated feeling but the patches that Gary is talking about became a lifesaver for her. She said it did not make her feel drugged up but it took the pain away. I think she had 3 patches on at a time at one point but it definately got her through the rough part. Please encorage him to use the patches and he will be able to ween himself from them when this difficult time is over.

Hugs,
Dani

Eve,

No doubt, your mother is in the worst position in your father's battle. There is little she can do to make him do anything. I never understood someone wanting to endure pain but that might just be my low tolerance and having a pharmacist dad for (almost) 50 years. Too much pain can weigh on the mind and the body in the worst ways and has a cumulative effect to boot. The stress from pain can also slow down the healing process. On the other hand, morphine can push you deeper into depression. As Gary suggests, get the medical team into the loop. Everyone will benefit.

I had about twice as much of the Duragesic patches as Gary (2 75 mg). My throat was a red, raw, bloody mess and I could not swallow for many months. I just wanted to kick back and weather the storm but it wasn't that easy.

Call in the medical team, they will be trained to help guide him in less suffering.

Ed

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

Eve, If I were your Mom and had a MD behind my name, I would have told your Dad[or my husband] to go find another caregiver! Especially with his pharmaceutical background. Watching a loved one suffer is one thing, but having a medical background and knowing that something can help is another and is torture when the advice is ignored. Take care of you Mom. Amy

I appreciate this forum and all your help so much. My Dad agreed this morning to the Fentanyl patches and is starting use today. Only four more days of IMRT left, and Tuesday was the last chemo. He's starting to get more motivated to swallow b/c he can't really get the anti-nauseau meds' full effects when he grinds them up and puts them in through the tube.
Thank you so!
Eve

Eve, that is terrific news. I am absolutely sure his interaction with everyone will improve dramatically as his pain diminishes and then vanishes. If he has not told you, more than one patch is many times necessary. At the height of my burns, I am pretty sure I was using four at once. Please let us know how he is doing. I am so very anti-drug, but after I experienced Fentanyl, I know that some drugs are VERY good.

Eve,

It sounds like your dad is turning the final corner, heading for the backstretch with the finish line in sight! It sounds like this segment of the race is behind him. What a wonderful time to stop and reflect on the succeses achieved.

There is some rough road ahead but just take it a step at a time.

Ed