Radiation for Throat Cancer

Hi @mzsadie-- sounds like you are dealing with a lot of challenges. You must be exhausted! Is it possible to discuss with his doctors? They might have some suggestions to help normalize his sleep patterns and might be able to tell you based on his treatments and medical history whether or not this night time behavior is typical.

I have tried you suggestions but if it keeps up going to ask loader.lol. But thanks. I think he just gets over tired and over stimulation and It confuses him. Got him a pump for his tube feeding so I can sleep, its helping.he is getting to the really tired all the time stage.so thanks for any and all words I appreciate them have a wonderful day. Kat

Hello Kat...I am a Kat too...breaking the ice lol. My husband went through radiation and chemo for throat and neck cancer. He had the feeding tube and now is four months out of treatments. He was very fatigued during and after treatments. He would get a brain fog like that made him forget things and sleep was a challenge. Some call this chemo brain but I personally believe it is from radiation and the chemo. At nights he would get really bad anxiety and could not sleep. His doctors put him on a nerve pill and he slept. It is the only time he can sleep. My father had Alzheimer's Disease and I was his guardian...when I look at my husband I see my father...my husband has lost a lot of weight and hair is more grey now and also I have seen the sun-downing affect in him too...so yes, I get what you are saying. His doctors say it's the evil killing the beast that is Cancer. That is just what it is...radiation and chemo are not friendly but they help to destroy the beast. Then there are things you have given up (your body has given up) to get rid of the beast. Side effects that you contend with so trading one for the other. My husband is strong and is still fighting. We go tomorrow to see about an area of concern around his thyroid. We are staying positive and it is a struggle but he has a lot to fight for and goes through things every day now to get closer to remission. Also, he feels better but the fear can overwhelm him and us but we chose to move forward and fight what ever this disease throws at him. Kat there are days I do not recognize my husband and it is stressful on me but I have seen his body go down to where it has been killed off and I know something new has to come out of it. He isn't going to be the same man I married and that is okay because I admire him for fighting and being strong. Yes, I get weary and have days that I feel like I lost the man I married but I haven't...he is still here being strong and I am so proud of him. Oh I get aggravated at him because he doesn't remember and he doesn't do things the same but I get quiet and I am still and I vent and I cry and I want to scream but then one thought comes in my head...he is still here...with less hearing...with less weight...with less memory but he is here. That is what people do not get about Alzheimer disease the person you love is still there. Yes, they go back in time...a time when maybe you weren't even in their life yet but they are still here on earth until their journey ends. Maybe I am being strong today and maybe tomorrow I will be a total mess but our journey is still going so we have to take it one day at a time. Hang in there and get rest for yourself...easier said then done but you need it. Just remember your husband is fighting...love him, care for him and know you still matter too and you need to still be here too. I have a great friend now because of this journey. We email and vent and talk about everything...confide in someone...vent to someone...and love this life we have now even if times get too hard...it is the life we have been given. Take care and tie a knot and hang on...Love and Hugs Kat

Thanks it's good to know someone else has gone thru this with this kind of symptoms. Makes me feel less crazy if that makes since. Yesterday wad a good day. Today is going to be a bad day. Take care of you to
Kat

Kat #1 (tweetskat), that's beautifully said. It's great that you reached out to Kat#2. (LOL)
Carol

Just wanted to keep you posted writing on this has been such a blessing. The last couple of days my husband had very bad days. He is only on radiation at this time but he is showing signs that a person taking chemo would have. Back in 2007 he had diverticulosis and the doctor thought it was constipation due to pain meds he takes for his chronic spinal stenosis. he always has pain. weil he went along wit this for two weeks, wont go into to the long part of the story but several operations latter he ended up with 6 inches of large intestine because his bowel died. I telling you this because with the feeding tube he is still losing weight. because he isn't getting the nutrition from his formula. He is not eating anything because of the radiation. so about every two weeks he has to have fluids. I wish they would put a port in to save his veins and it would be there if it comes to chemo. but when I ask it gets put on the back burner. Also. Any ideas his medical doctor is three hours away all he has is his cancer doctor. his ENT is moving away. And he still needs a nose job to open up his nose to be able to breath. should I ask for a medical doctor to fill in while he is there? Well going to enjoy being home for the weekend and hope and pray it goes well every one have a great weekend.

Kat,
How much weight has your husband lost? You said he's not eating because of radiation. Is he nauseous? He may not be eating because of the tube feedings! They lessen or quell hunger. I don't understand the need for fluids every 2 weeks or so. Fluid balance is a delicate thing, affects every part of your body, and dehydration can cause serious problems, including death. What your husband has is a "short gut" and treatment can include oral hydration, medication to slow down or avoid diarrhea, tube feedings, or total parenteral nutrition infusion (TPN). It goes into your blood, not your stomach. It is "custom made", it gives you doses of what YOU need. TPN can be given at home. It contains electrolytes, minerals, vitamins, protein, fluid, etc. It requires a way into the body like a port, PICC line, or a Hickman catheter (central line). It's too concentrated to go in via a regular IV into a vein. It's expensive, confining (hooked up like the tube feedings), and blood needs to be monitored for electrolyte levels, etc.
It sounds like a port is a reasonable thing to request for chemo infusions, IV hydration, and possibly for nutrition.
You have only one doctor who answers questions? The next time you see the other doctors, sit on a chair and say, "I'm not leaving without answers.". Or, give me their names and phone numbers/email addresses. I'll have a little talk with them.
I must comment on your mention of a family history of dementia. I'd be glad that it isn't on my side of the family if I were you (lol!). I think in your husband's case that he has side effects and some things are out of whack because of cancer, bowel problems, anxiety, pain, etc.
Does your husband want to live? That sounds like a stupid question, but it's not. Does he have advance directives? Does he talk to you about the future?
Carol

Hi, thank you for you input. And information about TPN. I did not know it can be done oat home. Good to k now if it comes to that. My husband has went from 230 lbs to 187 lbs. Since December.due to the taken out the large tumor in his soft pallet he is having to learn to swallow again. He was getting better a earring small blended food and even taking his meds before radiation started. Now everything is swollen again and he is starting to have the sunburn effect in his mouth the only thing he can get down is water and its a sip the Dr gave him lavicane to numb his mouth discomfort. We have not totally understood the nausea. The nutritionist ask him to try a pump. During the night. It could go slower than a can by syringe and to be honest let me sleep a couple of hours. The nutritionist has been great try to hep get his tube feedings in. I had ask before he had surgery about a port. Dr. Didn't think he would need it unless he goes thru chemo. But if he is going to have to continue I am asking again.I understand he is going through alot with the surgery,the treatments, taking away his beer every night..I was using sundowners as a descriptive way of saying how his mood changes and when it gets worse. It is very scary to watch the person you love. Get scared,and confused. And so demanding. And knowing trauma can set of dementia at times. Me. I worry every day that I am not going to be good enough to take care of him when I go crazy from lack of sleep or just go crazier than I already am. I probably do have dementia in my family. But we all have to be a little crazy to live on this world lol. Oh last question,yes he wants to live. He is scared of dying. So he has not given up. living will is place. And can't await till it gets warm enough to fish. Hope I answered you question and thank you for your information..sincerely Kathy

Question for anyone that can help. My husband only had three teeth that were not in good shape so they pulled them while they did his surgery. He couldn't wear his plates before he had surgery because of the tumour and the please that made them sucked. They gave him teeth that looked like logs. Anyway. Now bismuth is totally different. He was told he could get new teeth ad they were medically necessary. But unfortunately state doesn't pay for them. He is down to 9 radiation treatment YEAH! But what's next? Going to talk with his doctor but don't know what questions to ask. I know it will take awhile for healing, and they have to fix his nose. As when the Dr put the flap in it basically closed off his nose. I also know it's going to take time to be able to eat without the tube, again because he can't breathe thru his nose that is also harder. Unless he's Dr change his mine, he us still saying no to chemo. We well see when he gets thru. But over all its his body. Back to my main teeth question sorry I started rambling, if someone could give suggestions I would have something to go on thanks again for listening
Kat

Kat,
You've got so much going on, I hardly know where to start. Your husband has gastrointestinal issues from his mouth to his colon and they all impact each other. If I understand you right, he hasn't worn his partial dentures since before the surgery (to remove a mass in his soft palate), and 3 more teeth were removed. They also did surgery on his nose that's keeping him from breathing. The bowel problems he had have left him with only a small piece of large intestine so digesting food and getting nutrients from it is problem since a lot of that happens in our large intestines.
The changes in his mouth and nose area have caused his teeth to not fit properly and your state health insurance (Medicaid???) won't pay for new teeth. Has the doctor written an order for new dentures? Do you have a case manager?
You need to just ask what the treatment plan includes now. I'm wondering if they are even going to try to stop the tube feedings. He was losing weight while getting them in the day time so that he needed them at night to get enough calories. Going back to eating and drinking will involve swallowing and he's got changes in the area that may make that difficult. There are also issues that complicate the decision because going back to solid foods can cause digestion problems when all he's had have been supplements.If the plan involves him eating again, ask how his teeth will get fixed. I can't say much more without knowing what the doctor's proposing. If it comes down to him being allowed to eat and not having teeth that fit, try using one of the funding sites like GoFundMe (I think), you tell your problem, people read them and some may donate money to help you out with something specific. I've never suggested it before, but over the weekend I read about a guy whose girlfriend was going on a trip for spring break.He didn't trust her and went on a funding site and told the truth. He got enough money for a round trip ticket and went and found her. If people will help out with something that dumb, teeth should not be a problem (LOL). You can also ask if he can have his nightly can of beer. That may give him incentive to swallow again.

Carol