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 What is most difficult to see is to watch how withdrawn he's becoming -- and recalcitrant.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 He is so withdrawn into his pain and suffering that he sits/naps all day and night, and generally snaps at my Mom when she tries to help.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