6 months out

the_wife

Hello everyone! Hubby is now 6 months out from chemoradiation. When he first started treatments I had asked for some general guideilnes on recovery and his RO said that at 6 months he would be at 90% back to normal. But as many of you have experienced - and as I have feared - this is far from the truth. Eating is still very difficult. Because I was concerned, I had him do another swallow test about a month ago, and he passed. His SP seemed to think everything is just peachy-keen, but just because he can swallow during a test doesn't mean he can eat. 

The problem is that after a few spoonfuls of food - it doesn't matter what - what little bit of saliva is used up and it's hard to eat after that. Even with water, milk, or any beverage, it's tough going. He is getting very discouraged and I am getting very worried as he is losing weight and I'm not entirely sure why. He thinks he needs to be within the medical BMI guidelines and needs to lose weight, but all I know is that he is as thin as a rail. And I suspect that sometimes he refuses food because he doesn't want to consume too many calories, not because he can't eat. He likes the fact that he lost quite a bit of weight as he was considered overweight before, but not THAT overweight.

I'm not sure what stats are out there for survivors who continue to lose weight, but it seems like he needs more muscle on weight. When he was on the tube and getting off, I was monitoring his intake very carefully. Now he sets things aside or just doesn't finish what I serve. According to him, the main hurdle seems to be with lack of saliva, plus of course the fact that food is not at all appealing or satisfying. I have been reassured by many of you that this is okay, it's part of the process and that it takes time, so I don't get TOO worried about it, but....is it common for some H&N survivors to be anorexic? He reminds me of a teenager with an eating disorder. He won't see a psychiatrist or go on antidepressants. I know because we tried that before and he won't go and doesn't believe in taking meds for that. He has mentioned things that worry me - like committing suicide or starving to death. I tend to take those statements seriously. He would get mad at me if I mentioned this to his docs, but I know I should.

It's so hard to see him just wasting away and being depressed at not being able to eat normally. We are meeting with his team next week, so we will get help with these issues, hopefully, but I thought I'd ask you guys.

Thanks in advance!

 

 

 

Hondo

Still losing weight too

I am right at 14 years passed my first treatment and I am still losing weight. The last time I checked I was down to 135lbs, my behind is so small if I sit on the toilet I might fall in. When my doctor checks me she does not say too much about it because I am healthy or healthy as one could be with all my problems. I been on the PEG tube now just about 4 years because nothing can go in by mouth, not even water.

 

Tim

lornal

Depression

Right after treatment for my first bout of cancer in 2007, I changed primary doctors.  I wasn't healing - still getting fluids everyday at the hospital - not eating or drinking.  He put me on anti-depressants, but it took me a week or so before I finally took them.  I didn't think I needed them.  Boy, was I wrong.  Once I started taking them, I started healing, eating, and drinking.  And, I was back at work within a month after that.

Best thing I ever did.  About 13 months later, I was able to wean off of them.

I hope your husband will reconsider taking the medication. 

For cancer #2 (2014), which was much more invasive and disfiguring (a total laryngectomy), they started me on meds while still in the hospital.  I did try to get off them once, but was not successful.  I will try again this summer.

Lorna

 

CivilMatt

been there

 

the_wife,

 

My main food detour lasted 7 months.  I tried everything suggested on the form but came up with what worked for me and I was extremely happy.  I used to carry around a small igloo cooler filled with water and protein drinks and while others were eating hamburgers I was drinking whatever I brought with me.  At the 7 month mark everything changed and overnight my taste buds started working.  Until that time 95% of all foods felt and tasted awful.

I got better, much better and eat fairly normal today, That is with lots and lots of sips of water or whatever I have to drink.

 

For me, this whole food process takes time and patience. You have to find out what works for you and don’t give up.

 

Matt

 

 

 

 

 

the_wife

CivilMatt said:

been there

 

the_wife,

 

My main food detour lasted 7 months.  I tried everything suggested on the form but came up with what worked for me and I was extremely happy.  I used to carry around a small igloo cooler filled with water and protein drinks and while others were eating hamburgers I was drinking whatever I brought with me.  At the 7 month mark everything changed and overnight my taste buds started working.  Until that time 95% of all foods felt and tasted awful.

I got better, much better and eat fairly normal today, That is with lots and lots of sips of water or whatever I have to drink.

 

For me, this whole food process takes time and patience. You have to find out what works for you and don’t give up.

 

Matt

 

 

 

 

 

Thanks you guys. He has his

Thanks you guys. He has his good days and bad days - and so do I, of course.

Thanks for letting me vent!

Barbaraek

as a caregiver, I empathize with your concerns

It does indeed sound like your husband is depressed, and I think you would be smart to bring it up with your team. Someone used a really good analogy with me when I told them that in many ways my day depended on the kind of day my husband had. If he was down, so was I (even though I did my best to be positive). In the analogy they compared it to my husband dropping a load of rocks (down and out thoughts) on the floor and me choosing to pick them up. I mean it's important to give our loved ones going through treatment and recovery a chance to lay those burdens down in a safe spot...and I think it's our natural inclination to want to pick them up and make it better...but it comes at a cost to ourselves. Ugh, I feel like I'm not expressing myself well here - I guess what I'm trying to say is your husband needs to express some of his negative thoughts, but make sure you get support and help so neither one of you gets overburdened with rocks!

Eating IS hard. and I think 6 months/90% is malarkey in our case. We're still learning how to eat and progressing. Our rads were finished 7/17 and the last adjuvant chemo which was a disaster was the first week of September. I fully expect us to continue making progress for several months to come.

hang in there. I'll keep you both in my prayers...

Barbara

the_wife

Barbaraek said:

as a caregiver, I empathize with your concerns

It does indeed sound like your husband is depressed, and I think you would be smart to bring it up with your team. Someone used a really good analogy with me when I told them that in many ways my day depended on the kind of day my husband had. If he was down, so was I (even though I did my best to be positive). In the analogy they compared it to my husband dropping a load of rocks (down and out thoughts) on the floor and me choosing to pick them up. I mean it's important to give our loved ones going through treatment and recovery a chance to lay those burdens down in a safe spot...and I think it's our natural inclination to want to pick them up and make it better...but it comes at a cost to ourselves. Ugh, I feel like I'm not expressing myself well here - I guess what I'm trying to say is your husband needs to express some of his negative thoughts, but make sure you get support and help so neither one of you gets overburdened with rocks!

Eating IS hard. and I think 6 months/90% is malarkey in our case. We're still learning how to eat and progressing. Our rads were finished 7/17 and the last adjuvant chemo which was a disaster was the first week of September. I fully expect us to continue making progress for several months to come.

hang in there. I'll keep you both in my prayers...

Barbara

No more rocks

Barbara, 

Thank you so much - it always helps to hear other caregivers. Yes, I've let his provider know about my concerns, so I hope to get some help with that. At least now the ball is in their court.

I know what you mean about rocks. Not good. I recently found a wonderful psychotherapist who is helping me sort out all these issues. Even though her office is over an hour away, her sessions are very helpful and I'm so grateful to have found her. She does integrative medicine, including acupuncture, meditation, imagery, and other things. This works for me because I'm not big on using medications, but I understand sometimes it is necessary. We have also talked about ways that my hubby can express his feelings, too, but that's going to be difficult because I'm quite certain has no desire to get in touch with his feelings. My therapist mentioned hynosis for him, but I know there's no way he'd go in for any of that. Anyway, I will keep mentioning options to him, but if he is unwilling, there's only so much you can do....

I like to post monthly reports because even though it doesn't seem like things are getting much better, when I look back and see what we struggled with a few months ago, only then do I realize how much progress has actually been made. How soon we forget! Meanwhile I am struggling with my own health issues, so I think that makes things seem much worse.

On a positive note, I followed your lead and went on a mini-vaca. Stayed at a nice, upscale hotel and treated ourselves to a relaxing overnight stay. We just hung out and enjoyed the posh surroundings. It was wonderful! We need to do that more often. I'm thinking about scheduling 'date nights' and thinking that just might be the ticket!

Take care!

 

 

kdot2003

Hi, 
At three months out my

Hi, 

At three months out my weight has evened out.  I am still losing but VERY slowly.  About 42# so far.  I'm sure Ive lost alot of muscle with the fat.  On another forum they are saying you should have at least 2500 cal/day for the first year after treatment and I usually get in about 1200.  I'm happy about my weight loss but worried about my weakness and lack of stamina.  Went back to work but still its hard.  Protein shakes and smoothies taste pretty bad.  Mexican food tastes good.  I end up eating the same thing every day and its none too healthy although sweets and chocolate arent on the list because they taste horrible.  It IS depressing not to have much saliva and poor taste.  Sounds like your husband has just decided to eat how much he wants even if its just a little.  I decided just to eat what tastes OK even if its not that healthy.  Both of us are delaying our recovery I think.  We should be concentrating on eating HEALTHY and make every bite count especially if its only a few bites.  Weight loss is bad for a recovering body.  Sigh.  My immune system was improving very slowly but last bloodwork showed it was getting worse.  Poor diet isnt helping.  I wish I could help him.

Karen

Barbaraek

kdot2003 said:

Hi, 
At three months out my

Hi, 

At three months out my weight has evened out.  I am still losing but VERY slowly.  About 42# so far.  I'm sure Ive lost alot of muscle with the fat.  On another forum they are saying you should have at least 2500 cal/day for the first year after treatment and I usually get in about 1200.  I'm happy about my weight loss but worried about my weakness and lack of stamina.  Went back to work but still its hard.  Protein shakes and smoothies taste pretty bad.  Mexican food tastes good.  I end up eating the same thing every day and its none too healthy although sweets and chocolate arent on the list because they taste horrible.  It IS depressing not to have much saliva and poor taste.  Sounds like your husband has just decided to eat how much he wants even if its just a little.  I decided just to eat what tastes OK even if its not that healthy.  Both of us are delaying our recovery I think.  We should be concentrating on eating HEALTHY and make every bite count especially if its only a few bites.  Weight loss is bad for a recovering body.  Sigh.  My immune system was improving very slowly but last bloodwork showed it was getting worse.  Poor diet isnt helping.  I wish I could help him.

Karen

Karen

Keep working at it and trying different things. You'll hit on something that tastes okay AND is good for you. It will probably be hit or miss for a while. Maybe try some buffets? Best of luck to you...

Barbara

the_wife

kdot2003 said:

Hi, 
At three months out my

Hi, 

At three months out my weight has evened out.  I am still losing but VERY slowly.  About 42# so far.  I'm sure Ive lost alot of muscle with the fat.  On another forum they are saying you should have at least 2500 cal/day for the first year after treatment and I usually get in about 1200.  I'm happy about my weight loss but worried about my weakness and lack of stamina.  Went back to work but still its hard.  Protein shakes and smoothies taste pretty bad.  Mexican food tastes good.  I end up eating the same thing every day and its none too healthy although sweets and chocolate arent on the list because they taste horrible.  It IS depressing not to have much saliva and poor taste.  Sounds like your husband has just decided to eat how much he wants even if its just a little.  I decided just to eat what tastes OK even if its not that healthy.  Both of us are delaying our recovery I think.  We should be concentrating on eating HEALTHY and make every bite count especially if its only a few bites.  Weight loss is bad for a recovering body.  Sigh.  My immune system was improving very slowly but last bloodwork showed it was getting worse.  Poor diet isnt helping.  I wish I could help him.

Karen

Karen

At 3 months if your weight loss is slow, I think that's normal. I remember at 3 months the dietician telling me not to worry about healthy yet....just eat calories and protein. Use supplements when you need to and keep experimenting. Oatmeal seems like one of the easiest things hubby could eat early on and still does. He's getting to the point where he can eat just about anything as long as it is coated in some kind of sauce, but still - halfway through his meal food gets stuck in this throat no matter how much water he drinks. I'm going to have to go back to soups, I think. He keeps doing this hacking thing to get food to go down and I'm certain that's not a good thing. Not much I can do, though. The hubs is very stubborn, and you're right.... His mind is made up to stay within a certain BMI. He thinks it's more healthy to be thinner and I can't convine him otherwise, but his docs are aware and have warned him, so I think he'll be trying to maintain where he is now. I hope!

 

MrsBD

the_wife said:

Karen

At 3 months if your weight loss is slow, I think that's normal. I remember at 3 months the dietician telling me not to worry about healthy yet....just eat calories and protein. Use supplements when you need to and keep experimenting. Oatmeal seems like one of the easiest things hubby could eat early on and still does. He's getting to the point where he can eat just about anything as long as it is coated in some kind of sauce, but still - halfway through his meal food gets stuck in this throat no matter how much water he drinks. I'm going to have to go back to soups, I think. He keeps doing this hacking thing to get food to go down and I'm certain that's not a good thing. Not much I can do, though. The hubs is very stubborn, and you're right.... His mind is made up to stay within a certain BMI. He thinks it's more healthy to be thinner and I can't convine him otherwise, but his docs are aware and have warned him, so I think he'll be trying to maintain where he is now. I hope!

 

Eating difficulties

One thing I remember is that it took so long and was just so tiring to eat that I filled up quickly. It worked better to eat several smaller snacks a day. Another trick is to take a small sip of liquid before trying to swallow. I will chew my food and then squeeze in a little sip right before swallowing. Using olive or coconut oil, gravy, butter, etc. can also help food slide down more easily. For pills, I found dissolving them in a bit of water and adding a teaspoon of applesauce works better than crushing them and having all those tiny sharp particles to swallow. (Check with a pharmacist first.) Don't neglect swallowing exercises since they help strengthen those muscles. Things will get better!

the_wife

MrsBD said:

Eating difficulties

One thing I remember is that it took so long and was just so tiring to eat that I filled up quickly. It worked better to eat several smaller snacks a day. Another trick is to take a small sip of liquid before trying to swallow. I will chew my food and then squeeze in a little sip right before swallowing. Using olive or coconut oil, gravy, butter, etc. can also help food slide down more easily. For pills, I found dissolving them in a bit of water and adding a teaspoon of applesauce works better than crushing them and having all those tiny sharp particles to swallow. (Check with a pharmacist first.) Don't neglect swallowing exercises since they help strengthen those muscles. Things will get better!

Yep. Those are all really

Yep. Those are all really good ideas. We tried all those things. There seems to be two things going on here. One, he is having eating difficulties and two, he is very weight concious. He likes being thin and his clothes just hang on him now. He has this idea in his head to avoid gaining weight. Everyone has said, including his docs, Okay ... you're where you need to be right now, don't lose any more. But the way he eats or can't eat...it's inevitable that he will. I can see it coming. Maybe I'm wrong, but most of the time I'm right, lol!! We'll see....this is one instance where I would LOVE to be wrong!