Hi Folks. I had forgotten my username and password and quite honestly just haven't had the energy to get it, but have greatly missed the help/support/info from y'all, so i made myself take the steps to get back on here! So my husband is now 3 wks post radiation/chemo and we are finally back home, phew, that was a long haul away from home. I know he is going thru hell with recovery and i am doing my best to be optimistic and supportive and helpful, i really am, but i am so overwhelmed and frustrated and even angry that i am battling my own depression. I am going to start some counselling for my own sake, meantime how do i get him to listen to me and realize i am not really a nagging b word, but am trying to get him to follow docs orders? I have noticed he is no longer using all the mouth medicines/rinses he was given, just the baking soda/salt mix. He doesn't even attempt to brush his teeth or use his flouride. He has FINALLY increased his water intake, not because he believed me but because i had his doctor tell him, because you know, i am just the nagging b. So the mucous is less ropey, but now he drools, incessantly, and coupled with the bouts of mucous, well, it stinks. Horribly. He's spitting constantly, and it gets everywhere, and the smell is horrid. Is that because he isn't doing all the oral hygiene things he was told to do? He says he isn't having much, if any pain. I feel guilty and selfish if i bring it up anymore, not to mention he thinks i am just being that nagging b no matter how i approach it. We go see his doc for a check up next week, so guess i will grit it out until then and talk with his doc. I'm sorry to whine. I just have so much else going on and feel so overwhelmed. Back to the guilt and selfish feeling. Thanks for letting me 'talk'. Please be gentle!

You sounds like you have done an incredible job being a caregiver to a stubborn patient. At some point, the patient must begin to face facts that they are also responsible for their own well being, not just relying on the caregiver. Since your husband is 3 weeks post rads, he should finally begin to feel slightly better. His intake is what will determine how well he does. If he refuses to follow doctors orders there isnt much you can do. Maybe its time for you to take care of you. Maybe getting some anxiety meds would help you feel a little better about things. Do your very best to stop feeling guilty, sounds to me like you have bent over backwards and done the very best job you could. No guilt when you do your very best, you should not have any regrets for how you managed everything! Please dont apologize for whining!!! We are here for both caregivers and patients alike. I dont consider your post to be selfish or whining at all. Be kind to yourself and make some time to do something you enjoy. It would help to take your mind off everything, maybe go to lunch with a friend or even out for coffee.

Best wishes!





PS... If you ever have issues with user name/password, etc please contact me directly and I will always help.

It sounds like you two haven't spent much time apart from each other for quite some time. How are you cleaning your mind out?

In some ways, a military man isn't going to take incessant orders from anyone of lesser rank. You can tell him however many ways you want, have others tell him, but you won't get any results. Does he have any friends that could come hang out with him? This is the very worst of times through all this and just having friends around can help a lot.

I'm more concerned with the hygiene issues. If you can smell odors around him, we all know that isn't a good thing. The body isn't in condition to be fighting off new attacks. Bad smell means infection or rotten. Make sure the doctors are aware.

A have you thought of seeing a psychiatric oncologist? You have both been on a continuous spiral down since diagnosis.

Thank you guys. Your kind words were much needed-i just cried and cried. Not bad crying, though! You're right-almost NO time apart in all these several months, really. I would just go sit in my truck and listen to music or watch netflix on my ipad, but if he was feeling halfway decent he'd find me and just sit there in the truck with me. He didn't want to be alone. Now that we are home i spend a LOT of time out on the property, either alone or with the kids doing chores he can't and enjoying the horses or chickens. I dread cold or rainy days that keep me inside hearing the hacking and spitting. I took my mom to a doc appt in Austin, then we went to my sisters house. MUCH needed time away-i have to do that again soon! Meeting with a psychiatrist soon for anxiety/depression next week. Meanwhile I will await his doc appt and bring up the smell-i, too, am worried how he can heal if it smells like infection-it smells like that rotten tumor before they cut it out. I tried one more time to sweetly and gently broach the subject, after he rode to town with me to buy a new hot water heater as our just quit, and that smell in the enclosed space, well, i tried, he resisted by telling me it hurts to do his rinses/brush his teeth. I offered the suggestions from his nurses and then dropped it. Hoping against hope doc can get him to listen next weds! He is very stubborn, and most of the time that is good-not now, tho! I can't thank you enough for listening-it is soooo helpful! I pray someday i can help someone like y'all are helping me!

Just hang in there. You will be on the other side of this soon.

If it would help at all to have someone to talk to, I would be glad to offer. I live in Dallas.

As bad as it hurts, oral hygiene is so important, not just now, but for the future. The teeth will be a battle to keep in check and do everything possible to save.

You might try a waterpik. It is a device that sends a stream of water into the gum areas to clear out food particles and junk. It is adjustable so he could start very low and increase as he can. This might be a good alternative to brushing.

He does need to take care of his teeth or they will be gone soon. We have all been there. Everything about this really sucks. Even after the treatment we are not "cured". There are going to be daily things that will need to be done to keep what we have left and to reduce the chances of the beast coming back. I will tell you there isn't a day that goes by that I am thankful to still be a part of this world. There is a space that does exist and it will be up to you and your husband to find. The hacking will subside eventually. Stay strong and lean on your friends, family and us.

Fish

Its a pretty good crew we have here isn't it? I'm always impressed with the way OCF responds.

My wife had a difficult patient to care for too. Frustrated, grumpy, wouldn't eat, drink, take meds on time, etc etc. Drove her to what the doctor referred to as "emotional exhaustion" which I don't think is a huge jump from the "depressive episode" my psychiatrist diagnosed with me.

My wife's doctor did the right thing, start with the simple, easy fixes and see how they go. He asked her what made her happy before all this. She listed off a few things like going to the gym etc, and he said "go do that!" It didn't fix everything, but it did break the cycle she was in and put her head in a different space.

I'm very pleased to hear you are getting some counselling for yourself. I'd also suggest seeing a doctor to check you over physically, things like blood pressure etc, just to give you the peace of mind that you are taking care of yourself. Fluids up, eating and sleeping well, all that. Your husband's recovery takes a very long time as you know, and keeping yourself fit mentally and physically is very important.

Like they say in the aircraft, make sure you fit your own oxygen mask first before you help others.

Hang in there. I'm glad you have spent time with your family and kids.
Like uptown, I live in TX if you need to talk.
Getting out of your head always helps.
Hang in there,

What great suggestions you've had above! You really do have to take care of yourself because if not you won't be in any kind of shape to continue helping your husband. My son also had a "difficult" period and I became so frustrated because he wasn't taking suggestions and ideas I had learned here or things the doctor had told him to do. So I finally put my "nurse from Hell hat on" and told him that I was doing everything I possibly could to help him survive but that if we were going to make it, he really needed to help me out a little. I just could not do it alone! I did raise my voice a bit (I'm also normally "sweet") and maybe that's what impressed him because things started to change for the better. Things will get better for you and your husband, too. Hang in there . . . and do something nice for yourself!

I know how difficult this is and sometimes it takes longer than a few weeks for some people to really begin to do better. My husband's mucousitis went on and on and it smelled really bad as well. He did have the suction machine but it would get clogged and he'd legitimately need help with it. He drooled as well. Your post brought back memories of me sitting by an open window in December just to breathe air that didn't smell awful. I don't really think it was bad oral hygiene on his part but just extreme and long-lasting mucous but I was scared as are you that it meant infection. At the point when I had expected things to get better they just seemed worse in many ways. But,it does get better so hang in there and use this forum as a place to vent and to get support for you!