OK, I'm probably just impatient, but I've been pretty frustrated this week... I'm four weeks post-radiation and I feel like I took a few steps backwards this week, especially today...

I don't seem to have any energy at all! And I'm in this vicious cycle where my pain medications give me severe constipation (which is about the worst thing I've encountered during this entire journey). Yet without the pain meds, my throat burns and my mouth hurts, etc... And my salagen pills make me break out into a sweat about every time I take one...

Any thoughts on counteracting the constipation? (sorry not such a fun topic)... I'm taking stool softeners but they only seem to help a little...

ALso, is it normal to go "up and down" in energy levels? And is it normal for my throat to still really burn this late after radiation... My mouth seems to be doing better, but if I yawn or eat "rough" foods, it feels like someone is taking a torch to my throat...

Thanks for letting me vent a little... my wife keeps reminding it takes time... I guess I'm just impatient to feel "normal" again...

Eric

Hi Eric,
Your post brought back a vivid recollection of my 4 week post Tx experience. I struggled dramatically with the constipation issues (the mostly un-talked about side effect) and I now feel that the doctors could have managed that aspect of it a little better than they did. I never thought in my life that I would ever pray to God Almighty for regular bowel movements but I did (and it worked). It says in the Bible that we can be in prayer about ALL things and I tested this regularly.

I would start out by demanding better care from your doctors and nutritionist in that regard. If I had a PEG tube I probably would have taken Metamucil as well -fiber will help a lot. It is very important to insure your 2-3 liter daily water intake - dehyrdration exacerbates the situation. It amazed me how constipated one can get from just from a liquid diet! Be careful to avoid any binding agents like cheese, rice or bananas. Preparation H suppositories helped a lot in addition to dietary tweaking and the Pericolace. There are prescription medications they can give you as well.

It really didn't start to get better until I was able to get off of the pain meds - then the turn around (to normalcy) was rather dramatic. Hang in there - you are close to being at that point.

Hi Eric,

You are probably days away from seeing improvement. Personally I found the pain med induced constipation worse than the pain itself. As far as Salagen goes I quit taking that as well. The amount of salivia it produced wasn't worth the side effects either. (please check with your doctor before making a change in meds)

I am not a big fan of having to pile on meds to counteract the side effects of the other meds. so I tended to get off them as quickly as possible.

Your energy level will bounce around for a while and the improvement kind of sneaks up on you. I found that getting your body moving (like walking) would help.

Take care

Hi Eric,
I didn't suffer the constipation but I stopped the pain medications on my last day of radiation. I took vicodin while I was going through radiation, basicaly used it to sleep my way through it all. Once I stopped using it I found myself feeling worlds better. I sympathize with the yawning pain, mine just stopped about a month ago and I am 7 months post radiation. It takes lots of time to get past all of it, and even at 7 months out I still feel like I have a long ways to go. My energy levels still go up and down, I suspect that will be the case for some time. If I could offer any suggestions I would tell you to be as active as you can be and get off the pain meds.
Take care,
Minnie

Minnie,
You're a tougher man than I am! We men are wimps - we don't deal with pain well. Thank God we can't have babies!

I took pain meds for almost 2 months post Tx. You are in a very small minority of patients who can quit pain meds that early.

I still have "yawning" pain and I am almost a year out (and I didn't have surgery - that's just from the radiation!)

Mark I completely agree with you about medications in general - as soon as I could wean off of them, I did. I don't even like to take aspirin.

Medications, like most things medical, are all about risk/benefit. Always discuss any issues with the doctor before making changes.

Gary -- I had to laugh out loud when you talked about praying to God Almighty about regular bowel movements. Because I have done just that many times -- and I always make sure to give thanks when they come...

And yes, we men are wimps when it comes to pain... On some of my worst constipation days, I literally whimpered in the bathroom... it wasn't pretty...

Thankfully I have a wonderful wife who prays hard for me and cares well for me...

I will talk with my doctor tomorrow -- I have another follow-up -- about getting off the meds... I guess I'll just have to bite the bullet for a little while and feel worse in order to be regular...

THanks for the help...

OK, one more question... About a week after my last treatment, my doctor gave me a steroid for my mouth, and it did wonders for all the "gunk" that was building up and keeping me from sleeping through the night... (I was getting up about every hour, feeling like I was choking)...

But these days, I feel the gunkiness again (though not as bad), and I have to spit and rinse quite a bit... I have decent saliva flow (with or without the saligen) but is there a time when this gunk-mouth goes away? It's frustrating to have to spit so much during the day, and then to have it hanging out of my mouth because it's so thick, etc... I'm sure I freaked my inlaws out for the few weeks they were here because I was always spitting and hawking stuff into sinks, paper towels, trash cans, etc.

Thanks again for all the help, friends...

Eric

Gary and Eric,
I had a good laugh when I read your posts. Felt like the little kid who passes gas in church and can't stop laughing about it, lol.
I don't know why I handled the pain as well as I did, my mom said it was the Indian blood in me........same reason I had 7 babies, drug free, without so much as a whimper I guess. I remember when my dad had a horrible attack of kidney stones and his doctor told him to think of the agony if instead of a small stone it had been a 7 pound baby.........he told my dad to go home and hug his wife (my mother)!
Ok, I'm off subject. Eric, patience is the key. It took me forever to learn that one, I'm a pusher. But, I know that it will take me lots more time to reach the top of my "new normal". You are just starting out and there will be lots of speed bumps. Your body will tell you what to do if you listen to it.

Eric, your thick saliva will eventually thin out and stop. In my case, it was precisely 21 days, for others, shorter or longer, and some lucky ducks didn't have it at all. To sleep, I made rolls of gauze and put that in the gutters (like that technical term?) of my mouth, which allowed me to sleep for several hours. I slept with my head and shoulders slightly elevated, which also helped. I am not the only one who discovered that Puffs brand tissues are the best for clearing out one's mouth. They are soft and do not disintegrate. Finally, know that the thick gunk will stop eventually. Your energy ups and down are normal, and all in all, it sounds like you are right where you should be in your recovery. If I had a supply of patience pills, I would send you some. Hang in there!

Hey Eric,
Just to let you know that my hubby Dan is past half way thru chemo/rad. He has had many problems with constipation. Who knew that could be such an issue when one is dealing with cancer!! Anyway, seems like the best thing Dan has used is a prescription of Constoluse (technically I think it is Lactolose). Anyway, it's liquid so I can insert it into his PEG. Seems to help more than Ducolax, Colace and some of the other things we tried.
Hang in there as we all have to!!
Take care,
Deb