Posted By: ConnieT more of this crazy path! - 10-06-2018 06:52 PM
2 days from last radiation....already tried donuts. of course, that didn't go well. He's ready to get back to real food and asked me how. I said start with smoothies. He agreed to it. I made it with some coconut milk, heavy whipping cream, pineapple, banana, cinnamon and Ancient Nutrition vanilla bone broth. I assume he kept that down. I told him there are plenty of organic soups I had already bought for post treatment. Chicken noodle and tomato basil and lentil. I will just add heavy whipping cream to add calories and fullness and turn them into creamy soups. He seemed ok with that idea. He really wants his fast food but is finding that does not work well at this point. I went into the gas station last night to make sure he did not buy tobacco because he did not plan to give it up before treatment. we will see. the regulars around here know I'm dealing with one STUBBORN man.

He's high energy today like nothing happened. Our oldest took him to the store to buy water and pop and said he brought the TV remote with him for some reason. Son is realizing I"m not crazy when I say his mind is not all there right now. He said he could not focus on anything. I think he thought i was exaggerating....now he knows! i said we should write down this stuff so we can tell him later where he used to be and how far he has come.

oh boy.
Posted By: ChristineB Re: more of this crazy path! - 10-06-2018 07:38 PM
Connie, its a very good idea to write down all your husbands "off" moments. Your husbands unusual behavior should be relayed to his doctor at his next appointment. Most OC patients will have a touch of "chemo brain" but for most of us it was not too big of a deal. Write down everything you can remember and add all new events as well. You never know this could be more important than you realize.
Posted By: ConnieT Re: more of this crazy path! - 10-06-2018 08:23 PM
removing this post as it repeated another one I posted???? technology failure I guess!
Posted By: ConnieT Re: more of this crazy path! - 10-06-2018 08:25 PM
thank you Christine. It has been worse than I expected and even husband said he has alzheimers. It does remind me of dementia in that one moment, he has clear thinking and the next, totally off track.

My daughter hid all the keys and she even hid away his gun shells (it's hunting season) because he has lots of rifles in the bedroom with him. She said it made her feel safer to know he doesn't have access to questionable stuff right now.
Posted By: KristenS Re: more of this crazy path! - 10-06-2018 09:46 PM
My chemo brain was / is nothing like that. I forget stuff to an incredible degree (though I've had fun starting a new planner journal with lots of motivational stickers!) and my teens are good at reminding me. But it's more 'when stuff is' or 'what I promised to bring' or things that aren't a part of our regular calendar. Not stuff like taking the TV remote in the car (though I suppose I could do that by mistake, big as my bag is).

Who's in charge of his meds? Some of them can mess with memory, and that's worth checking. Also some of them mess with moods, and if his memory and his mood go weird, it's worth keeping a close eye on the meds. Check the side effects and see if any of them are adding up with each other.
Posted By: ConnieT Re: more of this crazy path! - 10-06-2018 10:09 PM
he carried the remote in his hand all through walmart! i'm glad my son saw it and told me about it. son asked if he needed batteries for the remote as he couldn't figure out why dad would bring the remote to walmart!

he is taking care of his own meds.

he already takes lots of depression meds. the only mood changes have been being highly controlling and argumentative like he has always been but it's been ramped up at times from his normal.

so glad others are seeing what I've been seeing. nurses and doctors got to see how controlling and uncooperative he is. son sees he cannot react properly or timely to anything and has no idea he is doing things that are odd. he just stares at things for long periods of time trying to figure them out.

thanks for telling me that your experiences have not been THIS significant. I have no idea what is normal and what isn't from chemo/radiation other than what I read here.
Posted By: ConnieT Re: more of this crazy path! - 10-07-2018 04:15 AM
and I forgot, he had tried to escape yesterday but we hid all the car keys. My son looked in the truck and he had packed a bag of work clothes, work shoes and a knife and put them in the truck. I'm writing some of this down to remember but also to share how far fetched his thinking is right now. He must have gone back into the house and gone to bed leaving the truck door open too.

Why would he pack a bag of work clothes? He is off on disability until Oct 19th and if he was going to work, wouldn't he have worn those clothes? They would fall off of him anyway as he has lost about 60 lbs.
Posted By: ChristineB Re: more of this crazy path! - 10-07-2018 02:04 PM
The things your husbands doing are much more unusual than any Ive seen discussed on our forum. The "everybodys different" is the only explanation I can think of. When I think of other members reporting their "chemo brain" moments its more of a problem remembering things they were doing. For example making mac and cheese and getting everything out to start making it, leaving everything right on the counter, walking away and going back to be before they finish it. Those are relatively harmless compared to packing work clothes and a knife. Not that it matters but the knife is pretty unusual as from what you've said it wouldnt be needed for his profession. At least it wasnt a gun!!!

Ive heard some patients doing wacky things who have had a reaction to the fentanyl patch. Is your husband on them? If so .... someone must check to see what hes been taking. Now that one wouldnt be very easy! Count the patches in the box and find the one he last put on... (my nurses used to write the date on new patches when they changed them) ... if hes on the patch this needs to be done. Im concerned hes having an adverse reaction --- with how he does NOT follow any instructions, that could be the culprit. Patients using the patch MUST follow any and all instructions to the letter. Fentanyl is the strongest pain medicine ever and is not anything to mess around with. The patch is also highly sensitive!!! Something as simple as taking hot showers of soaking in a hot bath can cause the patch to release too much of the medicine and can cause an overdose.

Others have done strange things after being hospitalized. Some of the things they have done are completely out of character, like yelling at the nurses and just being nasty to all the hospital staff. That was an older member who was having a very hard time going thru recovery and being malnourished so maybe his diet comes into play?

Ive done some goofy things myself immediately after having my first biopsies taken where I opted to be knocked out. On the way home after the procedure, I had my son go thru the Ritas Italian Ice drive thru and bought several of the quarts. That was pretty rational compared to insisting he stop at Kohls so I could go shopping. I went in, took a cart and went thru every dept looking at things then about a half hour later left my half full cart and went back out to the car and fell asleep. I don t have any recollection of those things and thanked my son for picking up Ritas quarts the next day. I thought he had don e this on his own and didnt remember a thing about going there or Kohls. We still have a goods laugh about my antics to this day. My situation was caused by the anesthesia I was given and not just my every day suffering at the end of finishing rads.

Hopefully your husband will come out of this in a few weeks after he begins to start feeling better. Id say 90-95% of all patients who have rads w/ chemo report the first 2-3 weeks after rads as the worst of it. Then one day they wake up and dont feel quite as crappy as the day before. Remember the radiation continues working even though the treatments have stopped. This could be whats behind his unusual behavior. If this continues Id suggest calling his doc next week. Im sure your husband has noi idea the things hes doing, at least I hope he doesnt!!!
Posted By: ConnieT Re: more of this crazy path! - 10-07-2018 03:06 PM
I will check about the patch but I have never picked up a prescription for something like that.

yes the knife could get him fired actually as they can't even have a screwdriver visible in their vehicles as it could be used as a weapon. kind of strict for the rural area we live in but it is the rule.

I don't know that he is eating even though he bought cheesecake, yogurt and milk. He's not getting up and getting those from the fridge. He does have a lot of water and pop laying on the bed with him. I know when he has gone to the bathroom as he refuses to put the seat down and the lid has been down for the past 24 hrs. I'm not sure he is even doing the feeding tube as he keeps the door closed most of the time which he has done for 25 yrs to some extent anyway because he isolates himself.

He normally would throw a fit if there was something on the floor and the bedroom floor is littered with clothes and all his supplies so I know he's not really aware of much or just no longer cares though when I'm driving him, he's hyper sensitive to a pebble hitting his car and stuff like that which is normal for him.

I'm taking note of what you and KristenS are telling me so I can determine how long I wait until I call the nutrition gal. She's my best contact person at the cancer center.
Posted By: KristenS Re: more of this crazy path! - 10-07-2018 04:08 PM
You mentioned his other meds too ... does he take Ambien for sleep? I ask that one specifically because when it doesn't work (some other med interferes or whatever), it REALLY does strange things to a person. We get the oddest Amazon orders after I have an Ambien insomnia night, which is funny ... but there are reports of people trying to sleep-drive and such on Ambien, which is not so funny. I've figured out which of my other meds personally it can be a problem with (my migraine ones, yay), but I wasn't on this during chemo and I can only imagine the havoc it might have wreaked with that or pain meds of any real strength. Also, the effects stack ... like my migraine meds mess with memory, and if I'd had that one during chemo, it would likely have made things worse ... I didn't get it till later though. They stack on each other and that's enough of a mess. If you need to compare meds and would prefer to do so privately, I don't mind if you want to talk via private message ... I too take depression and anxiety meds, and it can get interesting. And if his memory is off, then it's sure his dosing has to be off somewhere too, just because ... it's an easy one to forget. I kept a log of every single med I took for MONTHS during that time, and when and how much ... mostly to keep me on track, but also in case of emergency, so my family could pull up the file and have it handy for emergency workers, in case there'd been some funky interaction. That list was a big help, but only because I was paranoid enough to keep very accurate with it.
Posted By: ConnieT Re: more of this crazy path! - 10-07-2018 07:04 PM
I checked and he's not taking fentanyl or ambien. I think I will ask the pharmacist for a full list as there are so many bottles right now and I do think this needs to be addressed.

He called his son and asked for the truck keys so he could go buy cake. son calls me and I said I have frozen cupcakes, I go get one out of the freezer for him. I give it to him. I don't want it, I just threw up. ok.

He is not eating. He said he had a yogurt yesterday. I said are you using the drip or feeding tube? Neither. Yogurt is enough and I've only done this for 2 days...no food. We are talking a tiny container of yogurt here. I will be contacting the nutritionist tomorrow for sure now. I can tell he's lost more weight just in the past 2 days and his skin coloring is not good.

ETA. talked to pharmacist who is a friend and she couldn't tell me specific meds but said I had not picked up any prescriptions for him for a month. so we can cross that off most likely

I got called a drill sargeant! I asked if he felt like --it yet because he should. He said little pain but extremely exhausted. I said 1. that's normal 2. you could do something about it by putting nutrition into your body.

i asked how much water he was drinking....he had a bottle he said he keeps refilling but I have not seen him go to the bathroom for a couple of days though he could have but rarely if he has.

he will not use the feeding tube. He asked for cake so I got a frozen cupcake for him and he wanted milk so I got that. He said he has kept some food down but I cannot imagine other than yogurt what it would be since yogurt and cheesecake are the only foods he bought. I have healthy stuff he couldn't nor wouldn't eat.

Pharmacist heard just one of the incidents and told me to call the doctor tomorrow or take him to the ER here. I won't deal with hospital here unless it was an absolute emergency. I'm calling nutritionist in the morning and going to ask her how long she wants to let this go on. I'm already taking a friend to the doctor in the same area tomorrow.

Posted By: DeniseG Re: more of this crazy path! - 10-07-2018 07:43 PM
Call the Dr. If he keeps this up he will end up in the hospital again. You mention that he takes lots of depression meds. Could any of these be causing adverse reactions to his other meds? Do you know that he is taking anything properly? In his state of mind he may be forgetting to take something or taking too much. If he is not taking the depression meds this could cause some mental issues, you usually need to taper off these. It may be time for you and your kids to buck up and take control of his medication. None of this is normal. At any rate, a doctor call is in order. Hugs.
Posted By: ConnieT Re: more of this crazy path! - 10-07-2018 08:21 PM
thanks Denise.

He seems somewhat on top of things this last time I talked to him but it comes and goes. My son said it's like alzheimers and I said unfortunately it is. Lucid one minute completely foggy the next.

I looked around the room. 1 feeding tube bottle used since I took out the trash on Wednesday morning so it's more than 2 days of no nutrition like he tried to convince me.

I will talk to nutritionist tomorrow and get the low down on these meds and what he should be taking and when.
Posted By: KristenS Re: more of this crazy path! - 10-07-2018 09:41 PM
Slightly in his defense, I'll point out that when you get that tired and miserable, food isn't at all appealing. You don't want to eat ... so you get worse ... so you continue to not want to eat. I've had other illnesses long-term that had this effect, not just cancer treatments, and it stinks. (Between that and having kids, my weight has bounced like a ball on the moon since I got married ... sigh ... how anyone can be that sick while pregnant and still gain fifty pounds I will never grasp.) I think I hit 180 at one point, during pregnancy. Right now, I'm 115 due to nutrition struggles. For my height, that's ridiculously underweight. 'Normal' for me should be around 130, and I've been all around that up and down and sideways since this cancer stuff. (One doc tried to help with a depression med that increased appetite ... it worked, and then it WORKED, and we had to stop it!) I'm the size I was in high school. If I was still in treatment with radiation and chemo, this would be probably worth hospitalizing me over. If this is what your husband is doing, get him help. He's not going to be able to self-motivate ... his temperament isn't suited to it from what you tell us, and mentally he's not there right now, and physically he's not there either. (Sorry Christine ... I did try to keep up calories during treatment but me and that tube and the formula they gave me never did quite agree with each other! Connie, it's why I really advocate what she says to everybody else ... I couldn't do it, and paid for it.) Depression and food issues spiral down; they aren't self-fixing, especially if he's not in any kind of therapy (which I'll assume he's not, or if it he is, probably not following strict directions). I hate to suggest you get him back in the hospital, because I know that's a pain for you to have to deal with ... but it's probably what he needs, if your nutritionist doesn't make house calls. (Our formula delivery person was a nurse and checked in once in a blue moon. Not sure given your distance if you are getting that support.)
Posted By: ConnieT Re: more of this crazy path! - 10-07-2018 10:15 PM
There is no one keeping tabs on him from the medical community until 4 weeks from now when he gets a CT scan. We are an hour from the cancer center and 45 minutes from the hospital.

I'm just as worried about the lack of fluids as the food issue. It's unbelievable that he has had little pain. He said it's a 2 on a scale of 1 to 10 at the worst 3-4. The difference in him after the IV fluids was always amazing and he knows that. They preached to him (docs, nurses, etc) that his healing is dependant on him complying and getting the fluids and nutrition in his body. This fact alone makes me wonder if he comprehended what they were saying or if he even realizes how little he is taking in. Hard to say.

I'm thinking of having the nutritionist call him as he has a bit of a voice right now and could probably talk/listen to her. He's not going to listen to me but maybe just maybe he might listen to her?


ETA: he ate the cheesecake, another yogurt. small steps.......


Posted By: KristenS Re: more of this crazy path! - 10-07-2018 11:40 PM
Well, that's good on the food! And some people do have an amazing pain resistance. Maybe he got lucky on that one. It's possible?

((hugs))
Posted By: ConnieT Re: more of this crazy path! - 10-08-2018 12:04 AM
the lack of pain has surprised all the med people. He is not very tolerant about sickness so surprising that he has had little pain in his mouth. He really complained in the very beginning but has been so focused on that feeding tube issue the whole time that the mouth stuff was the least of his problems.
Posted By: ChristineB Re: more of this crazy path! - 10-08-2018 04:00 PM
Connie, even though your husbands first appointment with his medical team is at the 4 week post rads point, the team is still there 24/7 if there are any issues that come up. Dont hesitate to call for any changes you notice. His recent behavior should be passed along to his medical team. It could be the sign of some other ailment or medicine reaction?
At the very least by calling this in, you would be able to know what is normal and what else to watch for or if this would be necessary for his team to check on. I always err on the side of caution, if for no other reason than to ease your mind and know he really is ok and not a danger to himself or others. Most patients will have ups and downs (especially the first month post rads) and setbacks during their recovery. Almost every patient gets frustrated at the pace of their recovery. Patients can never get well as fast as they think they should. Unfortunately it takes 2 long years to be completely recovered! If your husband has not yet seen anyone to talk about his cancer to he really should so he can get some help in coming to terms with everything he has been thru. From what you've said, this probably will not happen but its worth a shot. If someone from his medical team recommends it, maybe he would cooperate? As far as the recovery phase goes, my doc explained to me its one month of recovery for every week of rads, but then it still takes more time for patients to regain their full sense of taste and saliva function. The sense of taste and saliva (excessive dry mouth) are what takes the longest to bounce back, patients report noticing improvements with them even around their 2 year post rads mark. During recovery its easy to lose track of time as most patients are so fatigued they sleep most of the day, especially the first month post rads. On a daily basis its not easy to know what day it is or if its night or day without looking outside.

Since your husbands behavior is so bizarre, I suggest calling his doc or even talking with his nurses. Do you know if your husband is on the fentanyl patch? If you dont know what meds hes taking, check with his medical team. My concern is he is not taking his medications as they are intended to be taken. Patients who are "out of it" should NOT be in charge of taking their own medicines without someone overseeing this. You should probably count his meds (if they're in pill form) first thing in the morning and check back at the end of the day to see what hes taking. For liquids, every morning pay attention to how much is in the bottle then check it at the end of the day to see what he is taking. Im sure your husband will NOT be happy being watched but for his own safety someone needs to monitor his meds. Maybe his meds should be visible like sitting out on the kitchen counter so he takes them in front of you or others in the household. Back when I was going thru rads and recovery, I made a little chart and wrote in the time I took what medication so Id know when it was ok to take another dose. I also kept a list of the time and date I changed the fentanyl patch. Previously I mentioned about following every single direction for the patch, patients who arent careful can easily (and innocently) create a very serious problem by the patch releasing too much medication which could cause an overdose. Even something as simple as putting the patch in a different place every time its changed could be a potential problem for the patient.

Please let us know how you make out with this!!! We all care and are concerned about both you and your husband.


@KristenS... Sorry that I am such a nag about intake!!! It really is THAT important. I nag because I hate seeing anyone struggle thru their treatments when its within their control to change the path they're on simply by increasing their daily calories, taking in more water, or by getting a couple bags of extra fluids every few days. I suffered far more than I should have and it hurts my heart seeing anyone else follow that same path. Almost all OC patients struggle to take in the recommended daily minimums. Most of us are lucky to hit even 1500 calories a day. BUT!!!! Those patients who can come close or exceed the minimums are the ones who have an easier time of things. During rads its not only the no appetite that impacts patients intake... everything tastes horrible. For me everything I ate or drank tasted like it was burnt, even water! My throat was so sore and I had mouth sores which hurt so bad, even talking was agony. I have no doubt every single one of us patients puts a significant effort into trying to eat and drink. Patients with feeding tubes struggle just as much as those who dont have one. Usually the nausea and difficulty tolerating the different formulas is a relatively easy fix. Slowing down the intake speed and/or watering down the formula is what works for almost every patient. Other patients will need to try out a few different formulas before they find the right fit.
Posted By: KristenS Re: more of this crazy path! - 10-08-2018 05:39 PM
[quote=ChristineB]


@KristenS... Sorry that I am such a nag about intake!!! It really is THAT important. I nag because I hate seeing anyone struggle thru their treatments when its within their control to change the path they're on simply by increasing their daily calories, taking in more water, or by getting a couple bags of extra fluids every few days. I suffered far more than I should have and it hurts my heart seeing anyone else follow that same path. Almost all OC patients struggle to take in the recommended daily minimums. Most of us are lucky to hit even 1500 calories a day. BUT!!!! Those patients who can come close or exceed the minimums are the ones who have an easier time of things. During rads its not only the no appetite that impacts patients intake... everything tastes horrible. For me everything I ate or drank tasted like it was burnt, even water! My throat was so sore and I had mouth sores which hurt so bad, even talking was agony. I have no doubt every single one of us patients puts a significant effort into trying to eat and drink. Patients with feeding tubes struggle just as much as those who dont have one. Usually the nausea and difficulty tolerating the different formulas is a relatively easy fix. Slowing down the intake speed and/or watering down the formula is what works for almost every patient. Other patients will need to try out a few different formulas before they find the right fit. [/quote]

You may notice I back you up every time you do ...or if I post first, I tell them someone cool will be along to post soon about all the things to do. This is WHY ... because you are RIGHT. laugh Actually, I'm not sure I could have taken in that total calorie count anyway, but I had other complications (my biography should just be titled "Complications" LOL) and it didn't happen. But it's GOOD to know what to aim for, because that information isn't available in other places, or not as clearly. This site saves lives, simple as that, and your advice, and Brian and Paul and all the other long-timers ... you save lives.
Posted By: ConnieT Re: more of this crazy path! - 10-09-2018 03:35 AM
well, he ended up in the ER. After telling the nutritionist of some of his odd behaviors, rad doc said go to the ER. hours later, he is admitted. I had to leave as my allergies were getting riled up plus I was tired. The nurse called as I was driving home from my second trip to Des Moines today (4 hours total driving!) to ask me questions since talking is difficult for husband. It was good to relay how long this has been going on and tell them how little food he has taken in over the last week...virtually nothing liquid or solid. I asked if they would teach him how to use that drip system with his feeding tube. We were just trying to figure it out when the doc's office called and said take him in so that's on the agenda tomorrow.

He wasn't as dehydrated as they expected but definitely enough to warrant an overnight stay. They are going to decide in the morning whether to do a scan on his brain or wait and see if hydration and nutrition in his body is enough.I truly think the nutrition or lack of it is the real problem. He did tell them he was seeing things and was delusional plus he was having tremors. Why is he so stubborn? He always thinks the rules do not apply to him and he wants to get to the front of the line as fast as possible. He's tried this behavior all through treatment and it only gets him in trouble.

I love this hospital/cancer center though. So glad we couldn't use our local hospital on so many levels. I would rather drive an hour each way and get the care he is getting in Des Moines.
Posted By: KristenS Re: more of this crazy path! - 10-09-2018 03:39 AM
Wow. So glad you got him in! I hope he gets sorted out soon and it's a minor fix, not a major issue. And that he gets some rest and YOU get some rest too.
Posted By: ConnieT Re: more of this crazy path! - 10-10-2018 11:55 PM
2 full days in the hospital now and no word from him. He does this all the time...ignoring all texts. It's a 2 hour drive round trip to go see him and it would be nice to know something. Family is getting pretty irritated with the lack of communication.

My oldest is going to stop and see him tomorrow while near the hospital. I sent 2 new shirts for him to change into so he can at least feel human.

I'm guessing he was a lot sicker than just dehydrated but wondering if they did a brain scan or decided it wasn't necessary.

The good thing is, I'm getting some rest because I know he is safe and being taken care of thank goodness as he wasn't willing to take care of himself by trying to beat the system.

I called the HR person about disability as he won't be going back to work in 9 days but no response to either call. Not sure if they are allowed to talk to the spouse so I called and let her know that he can't talk to her as he has no voice to speak. Hopefully hear back tomorrow.
Posted By: ConnieT Re: more of this crazy path! - 10-11-2018 08:41 PM
released after 3 days. no brain scans just nutrition. He had a sign on his door about a falling risk. When we got home, he almost fell after getting out of the car. He caught himself but i would like to know why this is happening. I am to call tomorrow to find out how to get into the portal set up on him through the hospital and cancer center so I can see more information.

my son says someone needs to make him do the feeding tube and I said, you can't make a person do something they don't want to do. It's up to him to get over his controlling/prideful nature and do this the right way.

I am going to follow up on extending the disability. He won't be back to work Oct 19th.

Meanwhile, my amazing friends are taking care of me and I have gotten long hours of sleep the past few days. My blood sugar is coming down and blood pressure better. I'm a bit of a health nut but this stress has taken a toll on my body.
Posted By: KristenS Re: more of this crazy path! - 10-11-2018 09:23 PM
Falling Risk could also just be because of weakness due to poor nutrition, for what that's worth.

((hugs))

I forget where you guys are located ... but is it possible the weather is a factor? We're down in Alabama (the upper part), and even though we haven't had a drop of rain yet, that darn hurricane is frying my brain with migraines. I'd forgotten how BAD this season can get. And since this is all head/neck treatment ... it might be more susceptible to the barometric pressure stuff. Long shot, but you never know. It's my worst trigger.
Posted By: ConnieT Re: more of this crazy path! - 10-12-2018 02:22 AM
I figure it probably is because of lack of nutrition. Not everyone had that sign on their doors...his was the only one i saw.

I'm in Iowa. Our worst weather is the fact it dropp3e to 40 degrees today! shock to the system really.

I did help him fill the syringes tonight for his feeding tube. I guess I will have to do that to make sure he follows through. His coloring looked bad again tonight. I'm going to pay more attention to that "gray" look from here on out.
Posted By: ChristineB Re: more of this crazy path! - 10-12-2018 01:05 PM
Im glad your husband is well enough to be home again! The fall risk is something nurses put up if patients are even the tiniest bit unsteady. Its all about covering their butt!!! If patients are wobbly even a little bit they want to make sure the patient wont get up without assistance and end up falling. Last time I was in the hospital for pneumonia I had the fall risk on my door. The nurses took it one step further with putting a bed alarm on my bed that went off if I tried getting up by myself. The bed alarm was such a nuisance!!! It was overly touchy and would go off in the middle of the night if I moved the wrong way. The nurses refused to remove the bed alarm unless I signed a waiver saying if I got hurt it was my own fault. The biggest problem with the bed alarm was the nurses were extra short staffed and couldn't respond in a timely manner if I called them to help me go to the bathroom. After I began to feel better a few days later, I noticed almost all patients had the bed alarms as they would go off at all hours of the day and night.

The issue with being off balance could be related to swelling from the rads. Ask the doc about if it has any relation to the treatments. If so then it may be several weeks before this improves. Being a week post rads theres only 1 or 2 more weeks to go before your husband begins to feel a little better. Im hoping that since his intake situation has gotten corrected that will help him to feel better quicker than most other OC patients.

Your husbands coloring could be related to his blood counts being way off. Ive noticed many cancer patients have an odd color when going thru treatments. If its tied to his bloodwork numbers then it may take a while for his color to return back to normal. My case is very different than most here, my blood counts took years to return back to normal levels... especially the red and white counts. Red blood cells are what carries oxygen thru the body. White cells are what fights infections. Pay attention to both but the white is what makes patients more susceptible to picking up all kinds of bugs that most normally would not. Patients may need nupeogen (sp?) shots to help boost their white counts back to the normal range. It can take months for the white to bounce back. This is an example of why its so important for OC patients top get a full blood count including testosterone and thyroid levels before starting treatment so the doc can see what the "normal" numbers for their patient are. Your husband will probably have bloodwork done at his first post rads check up. Pay attention to the white and red counts also look to see if testosterone and thyroid levels have been checked. If not ask the doc about why not as almost every single radiation treated OC patient ends up needing thyroid and testosterone levels monitored and require daily medicine.
Posted By: ConnieT Re: more of this crazy path! - 10-14-2018 02:10 AM
so i had to call the chemo docs on call because husband cannot keep food down even through feeding tube. he said it's like his GERD is acting up. they said to take the nausea meds. he did not want to but i watched him to make sure he did.

this is getting so frustrating. I'm making him do the feeding tube. they said to back off on that until his stomach settles down.

what were the 2 weeks after radiation like for you?
Posted By: DeniseG Re: more of this crazy path! - 10-14-2018 03:36 AM
Food, or mainly liquids and soups, tasted like crap and I wasn't interested in getting anything down. I knew that I had to get some nutrition so I ordered some high calorie Boost, someone on here had a link to an ebay page. I have problems with dairy so I tried Lactaid too because I couldn't find plant based drinks with enough calories. The Boost helped because it's a lot of calories in a small package. This was probably the worst time for me, the phlem was constant, throat still hurt, no energy. No feeding tube and no nausea though. Hope he feels better! You're doing a great job looking after him!
Posted By: ConnieT Re: more of this crazy path! - 10-14-2018 04:05 AM
he won't try food anymore. after a week of starving himself and ending up in the hospital, at least he was willing to do the feeding tube but he is still struggling. He sleeps pretty much all the time, only gets up to go to the bathroom maybe once or twice a day. I need to check and see if the nausea pills helped. His stubborness is delaying his healing.

2nd call to the on call cancer center. they are calling in anti nausea meds as I got to looking and he doesn't even have any. He said those were for chemo. duh....i think they are for nausea dude. He had the option to drive an hour to the ER again for IV fluids or wait for meds in the morning. He wants to wait but he can't even lay down. They said he will need to come in Monday for an IV most likely as he will be dehydrated again. I wish they would just keep him in the hospital for the next week.

I'm going to bet I drive to the ER during the night or early tomorrow morning.
Posted By: ChristineB Re: more of this crazy path! - 10-14-2018 01:03 PM
When using the feeding tube, he shouldnt lay down right after doing a feeding. He should either sit up or be on a 45 degree incline for at least an hour after the feeding to help avoid the nausea or GERD feeling. Its common for patients doing tube feedings to feel bloated after doing a feeding. Sitting up or on an incline helps alleviate the bloated feeling too. When using a feeding pump to do feedings, its usually at a much slower rate than the gravity or push methods which make it easier to tolerate as well. Most common anti-nausea m eds are compazine and zofran. Most patients have needed to take the anti-nausea meds 24/7 around the clock for days at a time or we'd end up sick as a dog. Some meds have pretty bad side effects, especially iof taking them along with other meds. Im wondering if compazine is something your husband had been taking prior to his hospitalization as theres some pretty dramatic side effects for some patients. Take a look at the side effects compazine can cause...

Compazine side effects web search results

RX list, Compazine side effects

When I used compazine, I had even more problems than controlling my nausea. Compazine caused me to have restless leg syndrome where I was pacing and could NOT sit down or stop walking back and forth. Up until that point I never really believed there was such a thing as restless leg syndrome, until I went thru it and saw how awful it truly was. I ended up hospitalized at one point from the compazine. For me, zofran worked the best, even now I still take zofran when my stomach acts up.
Posted By: KristenS Re: more of this crazy path! - 10-14-2018 03:35 PM
Definitely not laying down! I slept on the sofa at that point because I could use all the pillows in the house to prop up to a decent angle, (We don't have a recliner or I would've used that.) The bonus was, I got the TV, and the kids got to hang out with me late into the night, LOL. I had trouble tolerating nausea meds (gave up on those first week, and now have an allergy to one), and trouble tolerating the formula. It really messes with your head and makes you not want to eat. Hydration is more important right now. Yeah, it slows his healing, but at some point his stomach will settle and maybe there will be a food or supplement that will sit more lightly for him. Baby steps. There's no time frame to have to heal by. (That's for him, not for you...) It happens when it happens, and forcing it won't work ... giving up won't work either.
Posted By: ConnieT Re: more of this crazy path! - 10-14-2018 05:59 PM
I told him not to lay down after eating. I think he was so tired, that's all he wanted to do. He couldn't even keep down water put in his feeding tube which concerned me. I picked up the nausea meds. He wanted the cake i brought home from church for him as he has craved cake. I said not until 30 minutes after some nausea meds so I'm bringing him cake, a little vanilla ice cream and milk. I offered to make it into a shake but i guess he wants to try the cake as is. Not the healthiest choice of food but I wll let him give it a try.

He was walking around today so I'm taking that as a positive. I told him to put on new clothes as he's worn the same shirt since Thursday. I bought him some new smaller sizes plus washed all this t shirts. He asked why....I said, you need to change clothes once in awhile just to feel cleaner. He's still wearing the same shirt hours later...oh well.

ETA. he drank a little milk but it was too painful to swallow ice cream and a bite of cake so I asked if I could make it into a shake and he liked that idea. He took 2 drinks but said it was better but still painful. I said I will add more heavy whipping cream next time to make it even smoother. I don't think he's taking pain meds too much and never really has except for that feeding tube.

Now to keep it down.......
Posted By: Vanpaddler Re: more of this crazy path! - 10-15-2018 06:28 PM
I'm so sorry that he's having so much trouble trying to eat. After rads, all I could stomach for awhile were varieties of high calorie milkshakes and green juices. I got sick of having any one particular thing, so I just had a giant pail of vanilla ice cream, milk, and flavoured my shakes with whatever I felt like at the time (so chocolate, coffee, peanut butter, cherries, blueberries, coconut cream, bananas, peppermint extract, green matcha, etc.)

If he's craving cake, you can probably make a milkshake similar to whatever flavor of cake he might be craving. I personally don't like icing, but maybe its all that whipped cream and candy sprinkles that he's after. You can add those to the blender.
Posted By: ConnieT Re: more of this crazy path! - 10-15-2018 08:00 PM
I did just throw a small bite of cake in with the milk shake stuff. He had a little issue with the consistency so I said I would add more cream next time. Today I made cheesy broccoli soup from scratch with lots of fat. I blended it to liquid consistency and he swallowed about a tablespoon. He said that wasn't too bad to get down. I told him another tablespoon tonight if that went down ok. He won't use any pain meds. We might actually get 6 boxes of formula in him today. I started with 1 box, 1.5 box, 1.5 box tonight will be 2 boxes at one time with water syringe between every formula syringe. I told him we are going to record how much water he takes in a day as he was not putting anything out in the bathroom. I said, it's this or the IV which he does not want to do.

He's finally letting me be in control and while he has called me a drill sargeant for making him be accountable for putting nothing in his body for a whole week...well, I will accept that title and wear the hat. I'm tired of him dinking around trying to beat the system, it was only hurting his recovery.
Posted By: ConnieT Re: more of this crazy path! - 10-16-2018 03:50 AM
success! lots of water today and 6 boxes of formula...first time ever to get 6 in without most coming back up. he went to the bathroom 3-4 times so progress was made. I will say that he didn't sleep today until he took a long nap tonight while i was gone. Up to this point, he has slept most of the day and night unless he was throwing up.

tomorrow...more water. 6 boxes of formula and a tablespoon of broccoli soup. i will say he was more alert than I have seen him during the last few weeks, his color was good, no red rings around his eyes.
Posted By: KristenS Re: more of this crazy path! - 10-16-2018 04:23 AM
Yay! Glad to hear there's some progress! Hope it goes well tomorrow too!
Posted By: ConnieT Re: more of this crazy path! - 10-16-2018 11:41 PM
I have a question. is there an advantage to toughing it out and refusing pain meds?

I am up to 6 boxes now and I told him he will do 32 oz of water in that feeding tube. His output is so poor still. He grips about the water the most. He's dropped 8 more pounds.

He said he is not ready to swallow anything because of pain.

I did make him take a shower as he has worn the same shirt since I picked him up at the hospital last Thursday. I took all of his bed stuff and washed it too. I had him go outside and sit in the sun for 20 minutes and walk to the mailbox as his longest walk this week has been 10 steps to the bathroom. He just lays in bed the rest of the time. I figure it has to feel good to feel clean and have all of your bed stuff clean again. I worked on the psychological stuff today. His son took him for a ride while I was doing laundry.

He will not do the feeding tube unless I stand over him. I was gone for 6 hrs today and he did not do any water or feeding. I've become a full time nurse now as he refuses to take care of himself.

I will survive this....sorry my post is scattery....I feel scattery though today
Posted By: KristenS Re: more of this crazy path! - 10-17-2018 01:03 AM
No advantage I can think of. The meds aren't THAT good, so unless there's a real fear of addiction being a problem, or side effects being a problem, the misery of the pain far outweighs any difficulty the meds can cause. And I'm not much a fan of meds (never mind what my bedside table looks like). If he's that resistant to them, he'll probably be good and stubborn about weaning off them properly, so there shouldn't be an issue. And not hurting all the time DOES help you heal, if you remember you're still actually hurt and take it slow while recovering. (Meds get you through the pain, they don't take away the problem ... like folks who medicate an injured knee or ankle and then keep playing a sport ... bad plan. But folks who medicate to get through it and actually rest will heal, and be less miserable in the process. That sort of thing.)

However, it IS his body, and cancer is the biggest scariest loss of control of one's body that I can think of, barring stuff like dementia and MS and other permanent disorders, so some folks want to have even that much control ... suffering the pain means at least they are in charge of that much. It could be how he's thinking, underneath, without even realizing it.
Posted By: ConnieT Re: more of this crazy path! - 10-17-2018 01:32 AM
I think you are correct Kristen. It's something he has control over and control is very important to him. He won't take the pain meds as he is terrified of constipation. He said his pain is at a 2 out of 10. The worst it ever got was 3-4 out of 10. I will keep asking if he wants to try to swallow and it's his choice.

His mind is a little better than last week thank goodness. He still cannot comprehend or react to things quickly enough to drive. He conned his son into leaving him the truck keys. I quickly came home and grabbed those. He has been told not to drive for at least a month and he honestly is a danger to himself and others right now. Feel like I'm raising a teenager these days which is better than last week when I called him a belligerent 2 yr old! We are making progress and he looks so much healthier than he had.

He just said that something has changed. I said something defines nothing. He said he would put it into words in the morning???? I have no idea what this entails. I assume nothing good.
Posted By: DeniseG Re: more of this crazy path! - 10-17-2018 06:47 AM
If he would try the lquid lidocaine or magic mouthwash might help with swallowing.
Posted By: ConnieT Re: more of this crazy path! - 10-17-2018 05:02 PM
Denise...I wish he would try some sort of pain relief but he has refused. He took some hydrocodone briefly during treatment. It's just crazy that his throat has never been that painful 3-4 out of 10. He is fortunate.

Another question: is it important for him to try to swallow..is it like a use it or lose it scenario?

I asked what has changed as he had me worried last night but he said he must have been delusional. I'm going to buy a white board today and write the day, date, etc. like at the hospital as he is very confused about things and asks the weirdest stuff so maybe i can help him a bit with small amounts of info.

I told him we are going outside today and he liked that idea. I have to work on the psychological stuff by getting him moving and get him into the sun a bit for some Vit D. he literally lays in a totally black room year round. I have yard work that I need to do while it's in the 50s anyway. I also told him if he gets stir crazy, we will take the hour drive round trip to a medical supply to buy more feeding tube syringes.

He's not fighting me so much these days. Already got at least 8 oz of water in via feeding tube. He's still rarely going to the bathroom...maybe once a day.
Posted By: KristenS Re: more of this crazy path! - 10-17-2018 06:30 PM
Yes, swallow can be a use-it or lose-it thing, but even just swallowing a sip of water or making the swallowing motion can be enough practice for the duration. And there's therapy for after, to help regain it ... though of course, the less you've lost, the better it helps. The important thing is nutrition and hydration and feeling okay. Swallow is secondary to that, even though it's really important. Swallowing can be worked on, but not till you get better, which is why I put the nutrition and hydration first. Others might rank it differently, depending on how much work they had to do to regain it, so definitely take other viewpoints on this if they come in.
Posted By: ConnieT Re: more of this crazy path! - 10-17-2018 06:57 PM
thanks Kristen, I just wondered from the "experts"...those who have BTDT! I'm not pushing him to swallow but offering once a day. Some days he tries, some days he doesn't want to.

He opened the blinds today and is letting sunshine in! He didn't do that when he was healthy.

I've gotten 20+ oz of water in him and we have done half of the boxes of formula. I wanted more syringes but you have to get a prescription to buy them from the only Hammer Medical Supplies within an hour of me. I requested a prescription from the nutritionist. Filling a couple of tubes over and over is getting old since we do this 4 times a day.

His mind is still confused but he looks better and is sleeping so much less.

Posted By: embishop Re: more of this crazy path! - 10-17-2018 07:00 PM
For swallowing I made a huge effort to swallow throughout treatment, because a friend’s mom who had radiation to her throat 9 years ago never did get back to swallowing, and she’s been on a feeding tube for 9 years now. I had about a 1 week period where I ate only through the feeding tube because swallowing was too painful, but even then I still kept sipping water. I finished chemo radiation almost 3 mos ago now. Swallowing is very effortful, and I can only manage very soft foods, or soft foods with lots of gravies, but I’m happy to be able to eat real food. From my experience I would encourage trying to keep swallowing.
Posted By: ChristineB Re: more of this crazy path! - 10-17-2018 07:42 PM
You should discuss swallowing with your husbands doctors. He may need a barium swallow test to ensure he is able to swallow correctly (you may too embishop). The swallowing muscles can very quickly forget how to function together when they are not used frequently. Most docs say to swallow several times per day, even if its sips of water here and there thru out the day, or to try doing a few dry swallows. Once patients lose their ability to swallow it can take them years and some major work with a SLP to regain their ability to safely swallow. You definitely do NOT want to push anyone to swallow who is not physically able to do it. That can and does cause aspiration pneumonia which is fairly common for OC patients.

Connie, often hospital pharmacies will carry feeding tube accessories like the 60cc syringes as well as all kinds of other helpful items. You may have to ask for them or check on the Oley Foundations patient exchange website to see if anyone is giving any away. As a feeding tube patient, every month he should be given at least 4 of the 60cc syringes right along with drain sponges, paper tape and feeding bags for use with the feeding pump or gravity method of doing feedings. These items are medically necessary but he will need a prescription from the doc to get them.
Posted By: ConnieT Re: more of this crazy path! - 10-17-2018 10:04 PM
he is swallowing ginger ale to take his meds and it seems to go pretty well. He has finally resigned to using the feeding tube which is great.

I called and am getting 15 syringes so that I will have a supply. Never dreamed feeding tube syringes required a prescription. The good news on that is they will be covered by insurance.

The cancer center is offering a home visit and free counseling. I will have to run it by him as he usually balks at stuff like that.

He's in a different place now where I can deal with him, he's not happy about the feeding tube but I tell him when I'm coming back to help him so he can get used to the idea.

I did take him out to Walmart and he used the scooter thank goodness. I was concerned about him walking through the store. We got him some more jeans and some grooming things so he's wanting to take more care of himself. These are good signs.

I bought a white board like they use at the hospital. Not sure he will be happy about it but i"m writing the day of the week and the date on it as well as how much water he's taken in and formula plus his weight. It's helpful for me but also he is completely unaware of the days of the week and it will be good for him to know. He's coming out of this so much faster now that he is allowing nutrition.
Posted By: DeniseG Re: more of this crazy path! - 10-17-2018 11:31 PM
Positive steps!
Posted By: ConnieT Re: more of this crazy path! - 10-18-2018 05:03 PM
2 steps forward 1 back.

He was too queasy to do the last 2 boxes last night. I let it go. A counselor friend who knows him told me that if he doesn't want to get well, let him get sick again and end up in the ER. So I went in this morning and he was fighting doing his feeding so I said, I am not going to keep doing all this for you, you need to step up to the plate. Oh my, he has a voice today as he got quite loud with me. I told him to stop acting like a child. He finished radiation 2 weeks ago and those 2 weeks would have been the worst of your life. So he says, if I do all this (feeding and water), you are telling me I will get well enough to do it myself? after protesting how sick he is and just can't. I said well, this isn't the path I would take but you are too deep in now and yes, you have to do this. I did fill the syringes and he did them more quickly this time. The counselor said this is how he operates as she has counseled him, he's controlling you by making this a difficult process. She is right. I'm such a nice person and I was making it too easy on him. Yes, he was pretty sick but that's because he refused to do the feeding tube for over a week. That's not my fault. It's like he had a death wish in some ways. I told him that I will be gone this afternoon and tomorrow and will not be available to help with those feedings so he's going to have to take this on himself.

Hope no one thinks I'm harsh but I had to do some tough love or this could go on for months and months with an invalid who has chosen to be an invalid at this point. I know he must be feeling better as this is the old self when it comes to being sick...the worst anyone has ever been sick. Remember his pain never was beyond a 3-4 for him...he was fortunate. It was at a 2 last week. He refuses to use any pain meds and fights using the nausea meds.

He wants to know how to get rid of the sore throat....I told him time but not sure if there is another way.
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