I am the caregiver. My spouse RT ended 2 months ago. He has returned to work (as full time as possible). We even went out for dinner a month ago (anniversary) so what is going on?

He complained of heartburn Friday and then the next day he complained about his throat. I noticed on Sunday that his voice was hoarse but he is getting sicker every day. He can't stand up for long because he thinks he will pass out (light-headed). He can't go to work now. He gets physically ill from just eating Chicken Broth. His BP is ok but his pulse is high.

He won't let me call the Oncologist or call the ER. He has had a regular Doctor appt scheduled for tomorrow so he has said NO to my other suggestions.

He is as sick IMO, as he appeared to be during the end of RT (not at all the same pain).

Any suggestions or ideas?

Stacey - I think if it were me, I would call the Oncologist when your spouse is not around just to put your own mind at ease. You could call the regular Doctor, too in case it's something unrelated to cancer. Not knowing and worrying about something can produce a lot of stress and no one needs that kind of stress. You have to think about your own wellbeing so that you can continue being the great caregiver you are. Sometimes caregivers have to call the shots, here. Hope everything goes well and you find out something soon. Check back here and let us know what's happening.

Stacey, will he let you be part of the doctor's appointment? Can you talk to the doctor about your concerns so that your husband could be referred back to the oncologists?

It's sounds to be multi-factoral, and needs to be examined, have blood work, by the doctors for proper diagnosis. I can relate to all his symptoms, but may not be the same his, as are my causes. If he is only 3 months post treatment, it's still early, and may actually be doing well, even to have attempted working. Sometimes it can take a full year to recover. It's taking me much longer.

GERD
CIF...chemo induced fatigue
Anemia
Malnutrition
Dehydration
Low blood pressure

Good luck with the doctor tomorrow.

Thanks to all. The Family Dr did blood tests due next week. The urine test showed that he is dehydrated. Hopefully, he will be able/willing to drink Gatorade and they suggested the BRAT diet. He has the problem of not being able to keep anything down but ever since RT he won't (refuses to) eat any food that tastes bad OR even leaves a bad taste in his mouth. The RO told him once that he had to live.

Glad they identified one deficiency. Maybe your husband can get hydration by IV, ask. He does need to eat to survive, wether it tastes bad of not, unless he has a peg or nasal tube. The less side effects one has, weight loss and other complications have better prognosis. Can he chug down some protein drinks? He needs intervention from a multi-dusplinsry team, speech and swallow therapist, nutrionist, pain management, psychology, besides the RO and MO, to help with his not getting enough nutrients, hydration. Good luck.

It's good they found out about being dehydrated. When you're feeling badly it's hard to be able to keep track of how much water. Maybe lining up some water bottles for the day so he knows how much more he has to go to complete his required water intake. Sometimes you have to try different things until you find what can be tolerated. Certain meds can cause unexpected reactions. When my son had a lot of nausea, his meds had to be switched. It can be pretty depressing to feel badly for what seems so long. If the oncologist can be involved he may have some suggestions that could really help get your husband back on tract and feeling better. Hope things improve a lot very soon!

There is a "Water Apps" that keeps track. It lines up the glasses, I need, 11, based on my weight 178, and activities, which is none. Each time you drink, the display then empties the glass lol. I didn't really need it, but was fun to see, use for a day.

If they know he's dehydrated they should be willing to give him IV fluids. I agree, I would ask. It's just the easiest, quickest way to hydration.

He very slowly sips a glass of water that appears to last all day. Our Dr told him to stop with the water and drink Gatorade for example. He also said to go to the ER for IV fluids if needed this weekend.

He would not drink any Gatorade today tho. He didn't eat anything and I told him earlier today that I am doing what I think is right and safe for him and I am sorry that he doesn't agree. He is too weak to argue. The RO did want to see him but my husband didn't want to travel that far (20 minutes). He had to lay the seat flat to travel 6 minutes to our MD.

The Dr mentioned a possible virus, depression etc. I pleaded with him to drink/eat things that might/do leave a 'bad' after taste in his mouth but he won't. I pleaded with him to explain why he won't eat or drink (physically can't do it or what?) He said that he 'can' drink/eat certain things but it leaves a bad after taste. I suggested he use Biotene after...no luck. The RO told him that he has to 'Eat to Live' but he won't. He can actually eat now (couldn't before) but he seems to be saying that if I can't enjoy it then I choose not to eat or drink it.

I wish that he would use the help that is available to him. We have insurance so there is no excuse for this. The RO asked him to talk to the Dietician and he said ok to him but when I mentioned it then he was visibly angry and thought the idea was ridiculous.

He is dehydrated but he also complained to the MD about ear pain (and throat). It was the ear pain or tinging that finally prompted him to find the ENT.

Sorry for so much talking. I don't know what to think or if this is normal and I am overreacting.

Thanks to everyone.

Wow, Stacy. Your HUSBAND has a rather serious issue, not you. You are doing all you can to encourage him to do something as basic as drink fluids. If he was declared dehydrated and sent home then he was not that dehydrated and if he does not drink enough fluid he will be dehydrated enough to where he is going to be in a hospital bed. Maybe that is the sort of wake up cal HE needs to start to take a bit more control, responsibility, and ownership of his illness, well being, and care.

I do not mean to sound harsh but you can only do so much. The doctors can not MAKE him live, he has to want to live. You can not MAKE him drink anything, he has to want to drink.

That said, he could very well be experiencing a depressive situation but you know his personality better than anyone so you are most qualified to know if this behavior and attitude is consistent when he has encountered other illnesses, difficult, and stressful situation. If this is out of character, then it could very well be a serious onset of depression which in that case it is an illness like any other and should get treatment right away. If this is what you suspect, then you are going to have to force him to the correct specialist to get help immediately.

Good luck,
Don.

Wow, sorry to hear about all this Stacey. I struggle trying to understand the whole refusal to drink water that so many people have because they don't like the taste of it or other reasons. I was a water drinker decades ago and find that it is so beneficial for so many things. Try smoothies and use coconut water. It will help hydrate quicker, he may like all the things you can do in a smoothie like frozen fruit, add some protein powder, greens in powder like Greens and Whey or something. You can get hydration, fruit, fiber, nutrients and more plus make it however he might enjoy.

Ed

Stacey, Im very sorry to read about your husbands current condition. You have been the best caregiver he would allow. Its a shame he fights you with everything. Wish I knew of something to help you get him back on track. Ive been dehydrated and I felt awful, I actually thought I was dying I felt so bad. All it takes is for him to get properly hydrated and enough calories in and he will turn right around to feeling better.

After that doctor visit, I would have thought he would have begun to drink and eat. Ive always thought depression played a part is his stubbornness. To me it sounds like everything he has not been doing like he should have all along has finally caught up with him. If he chooses not to co-operate and refuses to eat and drink then his future includes a nice long hospital stay. They will probably send a hospital therapist in to see him while he is there.

His sense of taste wont be back to normal for quite some time. Its ups and downs for months after finishing rads. He is not the first one to struggle like this but it really is completely optional. If he can eat and refuses then its his choice. He could be feeling better today if he would drink and eat, its up to him as a grown man to stand up and take an active part in his recovery. It all comes down to hydration and nutrition, take in enough and you will go thru this easier.

So sorry that you are having such a hard time with him! Just remember as a caregiver you need to take time for yourself to catch your breath.

Good luck!!!!

Dear Stacey, having followed your journey from your very first post, I can imagine how very frustrated and tired you must feel, having to fight him over everything. Do you have access to a visiting nurse who can come into your home and monitor his vitals, and, in general, share your burden of care? I would keep an eye on him and get him to emergency if his condition deteriorates -- dehydration can strike swiftly and hard. Hang in there, we are holding your hand.

Stacy - I really like Gloria's idea about a visiting nurse (and PaulB's Water App). Sometimes, advice is more easily taken when it comes from someone other than the caregiver or close family. You know better how your husband would react to this, so you could give him a choice: either shape up and start eating/drinking or you will call the visiting nurse and make sure you request the "nurse from Hell, type" when you do. You could also give him the choice of hydrating himself or you will get someone to come help you get him in the car for a trip to the emergency room or maybe an ambulance could take him there. I can soooo emphathize with you. The memory is still fresh in my mind when my son was refusing to eat or drink. I convinced him I would get my daughter (police officer with a gun) to help me shove him into the car and to the hospital to have a feeding tube installed). That did it. He started eating/drinking. Drastic situations call for drastic measures. And soon. Please take care of you too, Stacey.

My mother in law refuses to drink and she is over 200 lbs with 8-20 oz/day. She is hospitalized just after nadir every 3 weeks like clockwork. "You don't understand me...I am like a camel and drink when I'm thirsty every 2-3 days."

I remember the Wall Street Journal full page article in 1983,"You can lead a horse to water...but you can't manage it to drink."

It makes no sense to water drinkers just like they don't understand how we can drink all the time.

One thing I thought of Stacey...if he seems disoriented at all this weekend, don't TRY to get him to go to the hospital, just call 911. Let them deal with him. Maybe he will listen to them. Or, have a friend call if there is somebody close enough to you that understands what you are going through. Christine is right, severe hydration will make him think he's dying. Maybe, at that point, he'll cooperate.
So sorry you're going through this.
Kathy

Tell him to drink ensure or boost (creamy things tend not to hurt or leave a bad taste (if its mild) Gatorade probably tastes gross! I don't drink pop, and have only limited amounts of juice - maybe green tea? It's mild, not bitter, and doesn't leave a terrible aftertaste. The alternative is eat whatever is tolerable taste wise then rinse right after.

Thanks for the advice and surggesions. I believe this is a depression issue. We go to the Dr again this week and I will speak to the Dr about it then. He hasn't been physically sick for a few days but he refuses to eat/drink enough.

The Dr's office can't give him fluids. It is very difficult to find an IV location when he is dehydrated and requires 'the best of the best' at the cancer center to administer the IV.

The ER can give him fluids. They do it all the time for c patients.

The visiting nurse can actually administer the fluids in your home. The IV needle, once in, can stay in the hand for a few days so that the rounds of IV can be completed. Talk to your doctor about your choices, sometimes things are less complicated than they seem at first.

Stacey, I am 2 months post radiation just like your husband. This is my second rad treatment and unless You have lived it It is hard to explain why we still feel so bad. There are days I can hardly get out of bed. I feel worse today then I did a month ago. I can take stock in the fact that for now I am cancer free but it does not take away the slow recovery. There are days when I think I am turning the corner and then...WAM...fell like hell.
Like me ,unfortunately he has to pull himself up by the boot straps and take stock in his own actions and recovery. I think because we both feel so bad , its is human nature to try to get people to feel sorry for us. My wife does not play that game so when I am in the self pity mode I am in it alone.
I get lots of help and support from the great folks here. He is the one that should be asking questions, and getting support from those that have been in his shoes and experienced the battle of radiation.
Sorry to be so hard but It is an individual battle. Steve Hurlock

Thanks again for the advice. He agreed to go in for an IV for the next 3 days and is ok with me calling his Doctors tomorrow. He did not disagree with me about a nose feeding tube or PEG. He stopped the Gatorade due to a tangy taste and ate almost zero today plus little water. Hopefully, we can improve the situation tomorrow.

That's an encouraging sign -- his agreeing to go for an IV and to get a feeding tube. Maybe he is feeling really awful. Stacey, you have been very persistent in your efforts to get him support. Being a caregiver is very hard work and often very frustrating. Now, do take care of yourself and make sure you eat and get plenty of rest too.

There are prescription medications, and OTC vitamins to increase the appetite..Marinol, megace, decadron, testosterone, insulin, melatonin, omega 3 fish oil, amino acids, wine, caffeine, but check with the doctor. Adding more fats to the diet will increase appetite, taste, lack of fullness, add more calories. Carbs will fill you sooner that fats will, and who can ever eat one chip or a nut. Adding oil to a drink can be done easily, a little sugar more so in it's effect or misting food with a sprayer may help with both swallowing, but also appetite, taste. Milk, creams, butter have the same effect. He may also have a food, taste aversion from associating the nausea with eating, vomiting from treatment, and may need to be deconditioned.