Things are getting harder

try L-glutamine powder mixed with water. You can swish and spit it or swallow it. Also a Rx called GelClair may help.

Unfortunately, taste will be shot for quite a while. Eating is a job to get through, not a pleasurable experience. Use the PEG and Isosource to keep his weight up. Try to stay hydrated. It will get better eventually but you're headed into the darkest part of the tunnel right now. Prayers for you and your husband.

Barbara

kdot2003 said:

Good Job

I am impressed.  I stopped eating about two weeks in!  I'm impressed with his fortitude.  I just could not eat anything that tasted like metal or cardboard, then the consistency made me sick.  I think he should commend himself!  Now i'm 1.5 weeks after tx and wondering how I am going to start eating again.  

you will eat again, but you don't have to feel pressured to rush it. My husband's throat was so sore it seemed like forever before he wanted to take anything by mouth. Just start with some water and L-glutamine, or a non-acidic juice. My husband also found milk soothing, though I know some people don't recommend that because it can increase mucus - which is not what you need any more of! For him it was one of the first things he tolerated. He also liked chicken bouillon broth. You'll get there!

Barbara

It sounds like he is doing really good! Right from the start my husband couldn't eat much. At the halfway point he was barely eating - just poached or scrambled eggs, Malt O Meal, Ensure and Scandishakes and that was about all he could do. He had mucositis and nausea so bad that he all he could eat were shakes. He was super sensitive to smells so he couldn't go near a kitchen. He felt so bad he rarely left his chair except to go to appointments. He ran a constant high temp. About that time he ended up in the hospital due to a fever and basically quit eating - mostly due to the pain, I think. That's when he got the PEG.

I think your husband is doing fantastic by eating all those things you listed. Good thing he already had the PEG in place. And he has a good attitude which will go a loooong way! 

Hang in there, you two!

Being half way is very good. Yes the days seem very long, but the weeks seem faster. A very wise and supportive man on here always will say; stay hydrated, and drink water you need to keep swallowing. I too have found that is some of the best you can have. You are at the rougher spot in the road,

  But doing so well. The road will soon smooth out and then you will know, yes it was worth it. Know you are both in my thoughts and prayers.

Bill

Believe it or not, your husband is eating a pretty well-balanced diet, especially for being halfway through treatment. I didn't lose my sense of taste, and the only things that tasted bad were citrus foods and sour cream, but I just wasn't hungry. My mouth and throat hurt like crazy too. Savory tastes were more tempting. On an earlier post, someone mentioned Chinese food. In addition to the food you listed, I ate egg foo yung, Stove Top stuffing, green beans, carrots, sweet potatoes and a variety of soups. 

Your reaction to the whole cancer treatment actually seems a lot like my husband's. He kept saying he was sorry and felt useless. Don't worry. We appreciate everything you are doing, and just knowing you try means a lot. When you look back on this experience in a few months, you'll be surprised at how quickly it went. You are in my prayers. 

I ate a lot of scrambled eggs. I bought a blender that also heated so I would make my own soup that became a broth. It also came in handy for smoothies and milk shakes. I use to also eat alot of milk toast. Heat milk and pour it over buttered toast. I use to use salt and pepper just so it had some taste.

I am surprised he still likes coffee, Into my second week I couldn't even stomach the smell of it brewing and it took 5 months after radiation to even take a sip of it.

He is living Bill Murry's Ground Hog Day. Every day seems to be the same. Soon he will break free of that and the healing process will brighten his days.

Life is good

      Jeff

swopoe said:

Thank you

everyone. Quick on the coffee...he can't stand coffee; just the ice cream. He is missing his daily Starbucks! LOL We do have a blender, and he is making smoothies and ice cream shakes each day, which is good. Along with his tube feedings, he is trying hard to get in his calories. He is sick of eggs, but he still eats them (with avocado and butter).

i know this is all temporary, hopefully, as does he. And in the scheme of things, it isn't a big deal. His doc yesterday said he is doing great for being in his fourth week of treatment. My husband has mouth thrush now though, but hopefully the anti fungal pills will help with that, and the doc said he may feel even better than he does now in a few days.

i also am fully aware of what cancer's "job" is as kcass said. I am taking anti anxiety medicines because I am having trouble sleeping, and when I do, I have nightmares, and because I have started having panic attacks. I am a stay at home mom with three young kids. My 11 year old is afraid to hug his dad because of the tube. I can't imagine if I God forbid had to tell my 6 year old daughter that her dad was going to you know. And my almost 10 year old daughter is taking on more responsibility at home than she should have to. It just all sucks. And I know all of you know this already. so yes, losing his tastebuds for now and feeding from a tube is a small price to pay if it means my husband will be here with all of us. It is just still so hard.

 

Swopoe,

It's good you are taking meds to help with the anxiety. This is very hard on the caregiver, that's for sure. I can't imagine doing it with children. It has an effect on everyone - friends included.

I think you are lucky in that your husband is actually doing the shakes and feedings himself. I made every single "meal" for my hubby, kept track of and administered every dose of med, almost every hour on the hour for his many side effects as they popped up, and did every single feeding. To this day, I am still the one who prepares all his food, whether it be real food or shakes. I count his calorie and protein intake and tally it all up to make sure he's getting adequate nutrition. I think if it had been up to him, he would have just quit or starved to death. Please understand, I'm only trying to share my experience to try to make you feel better, not worse. This is not an ideal situation.

By the 4th week my husband was using the tube exclusively. He was repulsed by all foods. Even the feedings made him sick. He had a gag reflex that made him want to throw up everytime he tried to brush his teeth or clear his throat. He developed an aversion to food that lasts to this day.

I've heard that the radiation basically burns off your taste buds, so with no taste and no hunger and no desire to eat, mealtimes can be very grim indeed. This part has gotten better for us at 3 months out, but not by much. At least all the nasty side effects are gone. Well, except for those two things (lack of taste and hunger).

It's not a good thing that he has become so dependent on me and I wouldn't ever recommend doing it this way, but we fell into a pattern with this extreme caregiving on my part. Like you, I'd do anything to cure his cancer and if that's what we have to do, I'll do it gladly. Whatever it takes. I agree, it shouldn't have to be THIS hard, but that's the reality until they come up with a better way to treat this type of cancer. It really sucks.

You've probably heard it a billion times, but it's sooo important to take care of you. If you can get out, do some shopping or get together with a friend, have some fun for an afternoon, by all means DO IT and don't feel guilty. You have my permission, from one caregiver to another. I know everyone says that and it's hard to do. I should talk, lol!

Take care.

Barbaraek said:

I could have written the above post...

and it has a lot of wisdom in it. I too, took on much of the care and responsibility for the care and feeding of my husband...and I still do. Part of it is habit, and part of it because I don't have enough belief that he will do it himself (he tends to prioritize work and other things over tube feeds, eating, neck stretches etc.) Sometimes I feel like such a harpy nagging do this, do that. Sometimes I do things willingly, lovingly and then am disappointed when it doesn't help (such as trying a new recipe or solution to a problem). Sometimes I feel like a mom...when I want to be a wife, not a mom. The best way for me to look at it is as a "coach" with the goal of assisting him reach his potential and take on responsibility for himself.

All this takes a toll on your pysche...especially when you have other roles to fill - like being a mom to young children as you are. I'm a bit luckier because our kiddos (25 and 22) have either flown the coop or are getting ready to take flight. My anxiety level would be off the scale if I had young ones at home. I am glad you have sought out some help in the form of anti-anxiety meds...are you able to get some counseling too? It helps a lot to be able to talk with someone. Try to carve out a little time - even if it is a small amount - that you can do something you love. Let others do things for you once in a while.

Your husband is going through the toughest part right now. He WILL get through it, the days (even if they are awful) will go by and then it will be over. Recovery has it's own challenges and you will meet them when you get there. For now, just keep putting one foot in front of the other, breathe, and hang in there. We're here for you, keep posting, and we'll keep praying.

Barbara

Barbara, I'm so glad to hear I'm not the only wife/coach/nurse/mother/caregiver out there! I, too, struggle with the various roles. It's really a lonely journey for both patient and caregiver and there are so many ways it impacts those going through it.

To other caregivers going through this I would say try to look for the silver lining because it's always there. The way I've been able to cope, especially during the treatment, was to distance myself a bit from the pain and suffering and attend to my "patient" as a nurse would. When none of the meds or magic potions seemed to help, I was the wife, giving a hug and a kiss knowing that is medicine, too. I never thought of myself as the mothering type (we didn't have children), but it's there and I found it easily enough.

During the recovery phase I am now the coach. Reminding him daily that yes, he will get through this, we came this far and we're not quitting now, so eat that cereal and finish those Ensures - you've got 800 calories to go (so get going, ten-hutl) LOL! I have to admit I don't like this role, but it's necessary...just like the others are.

Those who've never gone through this kind of cancer can ever know what it's like. Those who have never been a caregiver can ever know what you go through. All of our stories are different. Only you know what you're going through. So be kind and forgiving to yourself. You're doing the best you can.

Duggie88 said:

Things will get better

I ate a lot of scrambled eggs. I bought a blender that also heated so I would make my own soup that became a broth. It also came in handy for smoothies and milk shakes. I use to also eat alot of milk toast. Heat milk and pour it over buttered toast. I use to use salt and pepper just so it had some taste.

I am surprised he still likes coffee, Into my second week I couldn't even stomach the smell of it brewing and it took 5 months after radiation to even take a sip of it.

He is living Bill Murry's Ground Hog Day. Every day seems to be the same. Soon he will break free of that and the healing process will brighten his days.

Life is good

      Jeff

hahaha I love it, groundhog day.  That is SO TRUE