My husband is almost 6 weeks post treatment. I thought it might be helpful for someone in the future to know where we are at this point with regaining the ability to eat and move toward getting the PEG tube out. The struggle to eat any significant calories is real. He is perfectly able to swallow but finds most foods and many liquids repulsive. He is slowly starting to expand the things he is drinking. At then end of treatment he was totally PEG dependent for all liquids and nutrition except for swallowing meds.

Right now he can drink Boost/Ensure but not enough to meet his calorie requirements. He also drinks green tea and peach tea, hot and cold. He also now drinks Almond milk, water, Lactaid, Sprite, and Ginger Ale. He no longer can tolerate shakes of any kind but I'm hoping maybe soon. No eggs. He got sick on those during treatment and says he is afraid he may be off them for life. He will eat Lipton Noodle Soup, not the one with chicken pieces, only noodles and only the Lipton brand. No other soups are things he can even consider right now. He can barely tolerate mashed potatoes but will eat them. He finds baked potatoes and sweet potatoes as tasty as spackle or cotton, so those are a no go. (Maybe in a few weeks he will be able to eat these.) So far nothing with pasta of any kind has worked for him. He's tried cantaloupe, peaches and watermelon and did not gag.

Starting this week we sit down for one meal together. I prepare small amounts of 2 or 3 things for him to try. Sometimes it is something he has found acceptable before and then something he hasn't tried recently. I just feel like it is important to start seeing the rituals, smells and textures of eating as part of his life again. This part of the recovery has been so much harder than we expected. Since he can swallow we just assumed the desire to eat and the taste of foods would begin to return around now. He simply has zero appetite or interest in food. He looks at food and wants to eat it. Sometimes he says it even smells good but then when he tries to eat it he finds he has an aversion to it that makes him feel completely repulsed. It is still early in the recovery process but since this has been hard I thought sharing his fight with food might be helpful to someone else. He verbalizes that he fears never being able to eat enough to get the PEG out. I totally feel like he will but it is hard for him to see through his confusion about why he does not have more interest in food to feel certain for himself. I'll post about his progress again in a few weeks.

I've searched this site and read everything I can find. I found many helpful hints and it has helped me to know what worked for others. Everyone is different but the posts have been helpful in giving us ideas.

Sooner -

The recovery process is probably slightly different for everyone. Here is what I found useful after my first diagnosis and recovery. Food intake was a constant priority. The chemo and radiation resulted in the loss of the majority of my taste buds. Most of the "comfort foods" I enjoyed previously, based on taste, were now repulsive based on their texture. As the taste buds returned, the desire to eat and enjoyment of the process returned to an acceptable level. It probably took a year, more or less, to get to that point.

For now, rely on the pump and keep trying different things, but try not to push too hard, he may just become resigned to the pump out of frustration.

If things don't improve, try to sit down with a nutritionist and work out a reasonable plan

Recovery is a journey with many plateaus and obstacles to overcome. You have time. He can swallow. The rest of the equation will fall into place and the result will be his new normal.

Good Luck

The point where your husband is in his recovery is one of the most difficult for both patients and their caregivers. Often patients feel they are not making significant progress in getting better. Caregivers can get frustrated when they continually encourage eating but nothing ever is ok for their patient. Most patients think they should be better by now but a complete recovery takes a very long time, about 2 years. The end of recovery improvements are not as noticeable to patients around their 2 year mark with only minor improvements in taste and saliva. From my years here, many patients recovering from rads first begin to get some of their sense of taste back around 6-8 weeks post rads. For weeks, possibly months foods will not taste how they should which is very discouraging to patients. For me, everything tasted like burnt, over-salted, dry charcoal. It was absolutely horrible!!! Even water (all kinds... tap water or bottled water) tasted salty and burnt. Food that no salt was added to still tasted like someone put a whole salt shaker of salt on it. Eventually my wacky sense of taste returned to almost what it was before I had cancer and rads.

I dont remember if I ever gave you our list of easy to eat foods. Please let me know if you need it. One of the first foods I was surprised I could actually taste again was canned peaches. Make sure you do not buy cling peaches as they will be difficult to swallow. The canned peaches went down easily, when I would try eating them with a little of the syrup they would slide right down. When trying foods, rotate them every few days or weeks. What tastes bad today could be ok in a couple days or maybe not for a few weeks. But when you find something that your husband likes, its still not in the clear. Unfortunately he may only be ok with that food for a day or two before he isnt able to tolerate it anymore. Then a few weeks down the road that food is back to being ok again. Your husband may only be ok to sample something for the first bite or 2 and then it loses all flavor when he continues to eat it. It makes no sense at all how the sense of taste comes and goes during the recovery phase.

Hang in there, the worst is behind you both.

Yes we have experienced all of those things. I have used the Food List from here to get ideas. Thanks for the encouragement. He is discouraged but I am not. His voice came back slowly over time and I think this will as well.

Ok, good!!! Ive posted that list over and over so many times I cant remember who Ive given it to and who I havent.

Its next to impossible to not get discouraged during recovery. OC patients (and may of their caregivers too) frequently become depressed, taking anxiety meds or something to help them to manage their fluctuating moods could be something that may help your husband. Many patients do not even want to consider taking something for their mental state but it is only another temporary tool to help get them thru the rough spots. Many patients (especially men) refuse to consider using this kind of medication or talking with a therapist but it really could be a huge help. Im mentioning this because I think it might be something your husband would benefit from. I apologize if we talked about this before and I didnt remember. (In case you didnt know I have the worlds worst memory at times and then I can remember tiny details of something from 30 years ago... SORRY!!!)

Ive been where your husband is and yes, it is discouraging. Your husband is very lucky to have you in his corner! I have no doubt with you behind him, he will one day soon discover a food he never thought he would like actually tastes good again. When he hits that milestone then he really has made significant progress with his sense of taste and eating ability.

Eight weeks post treatment. No improvement in eating to report. We had our follow up with the surgeon to make a plan for a decision about neck dissection. I am very concerned that my husband is losing a little under a pound a week. He simply will not PEG an adequate number of calories. He's also more active. As he says...it is simple math. At this point I can't even focus on the not eating by mouth because I am so frustrated that he won't PEG enough calories. He knows exactly how many VHC Boosts he needs to PEG. He knows the impact of poor nutrition and says he is doing the best he can. I just don't get it. I totally understand why he may be unable to take in significant calories by mouth. I totally understood when he said he could not PEG enough during treatment for various reasons. This, I do not get. He has returned to work. We've had countless discussions about setting a reminder on his phone to eat. He has discussed getting a different kind of feeding tube instead of talking about how to make progress toward getting it out. Before he had the tube put in he could only talk about getting it out. To me if he can't/won't put adequate calories in this tube, why get a new tube? There is nothing wrong with the functioning of his tube, he just does not like the size/appearance of the one he has. I am not the one with the disease so I totally confess I do not understand this turn of events. Never, ever, ever dreamed this is what would be occupying my mind at this stage of recovery. I can hardly watch this go on and wonder if the weight loss will stop or not.

At this point I feel like he has got to decide to take charge of his nutrition. He is not too sick or in any other way too impaired to do it. When the medical team or I talk to him he always says he will do better but he doesn't, just continues to say he is doing the best he can. As a caregiver, I can just say it does not look like his best. I am frustrated. I feel like we are going backwards. They told us at their center at the end of a year 95% of their patients are no longer tube dependent. I hope that is true for him but today I am feeling concerned. The HNC PA just flat out said that he needs to be in charge of his nutrition and at this point if he is not taking in adequate calories that is on him. I confess that to have endured what he has and then not do what seems to me to be one of the few things he could control I just don't get. He is facing a possible surgery in 5 weeks. We have discussed the importance of good nutrition if that happens. Still just does not take in enough calories and gets angry if if try to manage his intake. Trust me, I do not want to be thinking about or discussing what he is eating/not eating at the point. Sorry, I do not have a cheerier report but in case someone else got through this I am just trying to be honest. If it makes no difference if he continues to lose weight, I wish someone would tell me. He has lost about 13% of his weight.

Boy am I sorry to read about your husbands lack of progress with his intake! You certainly have your hands full right now. I understand the situation very well. I fell into the same trap and it landed me in the hospital several times for malnutrition and dehydration. It wasnt because I didnt take in enough cans of formula, I completely skipped feedings and had other issues too. The biggest problem I went thru was not having a caregiver. This caused me to struggle. As for the feedings, I was so wiped out I would spend about 23 hours a day in bed. I would only getting up right before my kids got home from school so they wouldnt know how sick I really was. This quickly snowballed to where I got so sick my I could barely walk and my son rushed me to the hospital without stopping to even make an appointment. The receptionist saw me in the wheelchair and how bad I looked and took me right in the back to the treatment rooms. The doc came in and looked at me and admitted me into the hospital where I stayed for quite a while until I pulled out of it. That doctor never asked me a question or examined me at all, she just looked at how sick I was and within 2 minutes of arriving in the hospital, it was poof! "you're being admitted".

If your husband is well enough to return to work then he should be well enough to manage his intake. I'd like to know what kind of feeding tube he thinks he will get? I doubt that any physician would replace his current feeding tube with another type when the patient isnt using it like he should be doing. Many patients hate using the feeding tube but it is a necessity for them. If your husband is still losing weight its due to not taking in enough. The bare minimums a patient needs during the first year post rads is 2500 calories and 48-64 oz of water.... every single day until at the very least he hits the one year mark after finishing rads. Thats the minimum!!! For someone who has significant weight loss, and still is losing weight they need more. I suggest 3000-3500 calories daily. When I was in my recovery phase, I would make these giant chocolate peanutbutter milkshakes. Those shakes had anywhere from 1200-2500 calories each depending on how much of calorie laden ingredients I added. I drank one every day, some days I had 2 or 3 of them until I realized that I was taking in over 7000 calories a day. I started reading up on this and discovered that during the recovery phase the body continues to fight hard to rebuild itself which burns up calories at a much higher rate. Even with taking in 7000 calories several days a week and 3500-4500 the rest of the week, I still did not gain an ounce. I was stable, without losing any more weight but I couldnt gain anything. I finally began to gain a little weight about 5 years after my initial diagnosis of OC.

Recovery is a long road!!! Its full of ups and downs and a few setbacks thrown in there too. Its NOT easy at all and when theres a patient who is in denial of the severity of their situation that becomes a dangerous situation for the patient. Without proper nutrition, calories and water your husbands body can not rebuild itself. I already know he will not want to make changes with increasing his intake thru the tube but he must or this will become a huge problem for him. I nag members about intake all the time. WHY? Because I was so sick when I was admitted that I actually was convinced I was in the first stages of dying. I really thought I wouldnt get better enough in time to survive. Thats something I wouldnt wish on my worst enemy. Your husbands weight loss must stop. The only way that will happen is if he dramatically increases his intake immediately. Unfortunately if your husband doesnt make some major changes he will have a harder time than he should. This can also be due to his aversion to the particular type of feeding tube he has. Thats just a personal preference that is NOT important or a reason not to use the tube. He must begin to turn this around or it will catch up with him and he'll have some pretty lousy days ahead.

Malnutrition can cause serious problems with his health, he is not just losing weight he is losing muscle as well. He will start to notice he isnt as strong as he used to be. He will begin to get fatigued easily and have problems with his memory, balance and even having the strength to walk around. Its very scary when your legs dont want to work anymore and you dont have the strength to even stand up. Ive had many "bad days" where I have had to go to the ER for emergency hydration from being in really bad shape. During those episodes I get confused, throw up, have diarrhea, stomach and abdominal cramping, infections, non-healing sores, and just completely out of it where I was lucky I knew my own name. Mentally I was not even present enough to text or dial a phone. Once I realized what was happening I usually could catch it in time to turn myself around but not always and I would really hate to see anyone else ever go thru that when they could so easily use the feeding tube.

Being a caregiver is a TOUGH job! Watching someone you love not take care of himself must be very hard to see. Having a patient who becomes stubborn and is refusing to take care of himself by ignoring doctors orders will have problems. It will catch up with him which as his caregiver will not be easy to watch happen. Your husband understands everything about his condition, right? Is it possible he is depressed? That is very common in OC patients. Mentally being forced to face your own mortality can be very difficult to deal with. If your husband has not seen a therapist or had medications to ease the anxiety then it would be a good idea to suggest this to him. Im sure he will not want to participate in things like this, most patients have the "not me" type thinking of needing some temporary mental help. Its just like the feeding tube... its a tool to get him thru some rough spots. I hope he turns this around soon.

Im rooting for you, best wishes to you both!!!

PS... Im posting this separately to give you a suggestion. Print out my previous reply. You can either directly hand it to your husband and tell him to start doing better or he will become very ill or "accidentally" leave it laying somewhere you know for sure he will read it. That trick has worked wonders for stubborn patients and frustrated caregivers. It takes the confrontation about his action off the table. It has successfully turned around many patients who thought they "knew what was the best thing for them". Just make sure it appears like you were reading it and set it down to go do something. You may need to print a few things so it isnt so blatently obvious what you are doing.

Boy do I hope this helps!!! Im sorry if I came across as a bit stern in my previous post. I did not intend to sound harsh at all. Im concerned about your husband and he must change his ways or he wont feel very well. Its only a matter of time before it catches up with him.

To update, we had a good talk and we worked out a change in the feeding/eating schedule. He has been managing his own eating and has had adequate intake every day. He also ate more by mouth today than any day since treatment. He has been talking about a plan to work toward getting his tube out after his PET. We have been working toward walking around the lake and he did it all the way today for the first time. Positive steps in the healing process.

Thats a great update!!! Im so happy to hear your husband is being responsible for managing his intake and he is adhering to what needs to be done. Keep up the good work!!!

Eleven weeks post treatment. For those of you with a struggle to return to eating, hang in there. We are moving forward with the speed of a glacier, but we are moving. Added in eggs and meatballs this weekend to the food he has ingested successfully. Still balancing with the pull between the VHC Boost PEG feedings and transitioning to food by mouth. If he eats a meal by mouth it is hard for him not to skip the PEG feeding near that time, but he never takes in as many calories by mouth. He can drink most anything now which is progress, too. Dry mouth of course is an issue. We have used many ideas from this site to compensate for that problem. Awaiting the PET and results before we decide what to do next about his PEG. At this point he could maintain by mouth if he was really motivated. Sadly, he still says that everything tastes like cardboard and nothing about eating is enjoyable yet. Still hoping that comes. I've invested in a high quality blender to help with the transition to more foods by mouth. Plus that will allow us to both eat the same foods. He still has zero appetite either. All in all movement in the right direction but still much slower than he would like.

Thank you for the update! Im glad to see your husband is doing better with swallowing. Everything you described could have been said about most post radiation patients on this site. It seems to take absolutely FOREVER to get the sense of taste to match what we think things should taste like. Patients here have reported getting a boost to their sense of taste as far out as their 2 year post rad mark. How I wish I could tell you truthfully that everything will be ok in another couple weeks but its a slow go for almost all of us. The key to recovering is making sure to get enough calories in every single day. Next doctor visit ask the doc if adding a multivitamin or some high protein whey powder to his diet would help with your husbands recovery. Protein helps the body to heal so this could be something that would help. Ive used it successfully many times.

Best wishes with your husbands continued recovery

I can understand the glacier mode of speed... I am six weeks out and have sipped chicken broth and downed frosted Rice Krispies ( very soggy). I had roasted corn on the cob yesterday and today. Tasted like corn lol. Just drinking water and tube feeding boosts and smoothies. It hurts to swallow but I am motivated to try different things. I have an aggressive attitude about things. Everything has a twang to the taste but you have to experiment. I wish you and your husband well!!

This made me chuckle. I just gave away a box of Rice Krispies. He let them get soggy and then said no way he could eat them. It kinda had a party when he could eat eggs yesterday. We will get through it one day at a time.

An update on the food journey at our house. 12 weeks post treatment, it is no longer a food fight. My husband ate 3 meals today and had no VHC Boost for the first time in months and months. We have had two recent meals in restaurants, yes, the kind where you order off of menus and eat like everyone else. No, nothing is like before treatment but it is good and a victory over this beast of a disease. So, if you are struggling with eating at your house, please don't give up. Just keep trying something. Making friends with a Vitamix has been a game changer for him. Hang in there and keep fighting. We are a work in progress here but progress is the important part of the message.

Great to read your update sooner!

I just remembered about a food that worked early in recovery - canned crab meat sautéed in butter. And yes, my husband had major improvement in taste & smell and swallowing well past the one year mark, even some increase in saliva after 2 years.

15 weeks post treatment today. Wow, it has been a journey. On Friday, my husband is scheduled to have his PEG tube out! No one wants to have a PEG tube. However, I am so grateful for this device which has allowed my husband to get adequate nutrition and hydration since his diagnosis. The nutrition and hydration he needed to stay alive, recover, return to work, take hikes and plan trips with his family and friends. I am totally confident my husband can maintain his weight at this point without the PEG tube. Will it require constant maintenance and monitoring? Yes. Is it like eating before treatment? No. However, he can find things he can eat when he goes out with his friends and manage eating at work. Food brings him a lot less pleasure than before treatment but he has returned to eating 100% of his calories by mouth. He told me this week he has ever been happier in his life. So, if you are in the struggle of treatment or recovery, do not give up. We also found out this week he does need lung treatment or surgery for treatment related issues so this is a big week at our house! There are no medals or greater chances for recovery if you elect not to use a PEG tube. The goal is a cure not avoiding medications or devices. Do whatever you have to do to get through treatment, if that is pain meds or a feeding tube, do what you need to do and do not feel less heroic or strong than other patients. Everyone responds differently and has their own path to recovery. Everything said on this site about how important nutrition and hydration are in the recovery process is true. Do the best you can to meet the intake goals but hang in there if you or your loved one has periods of time when it is really, really, really hard to do it. Hang on to our good days until you can get to your own good days. You can do it. Good bye PEG tube. You have served us well but it is time to break up!

It's great your husband is losing the PEG. When John had his PEG taken out, it was close to Christmas and the MO allowed him two glasses of wine to celebrate. Unfortunately, taste changed caused the wine to taste like metal. But whatever, not having to be fed through a tube is worth celebrating on any day!.

Congrats on the PEG tube removal. Can't wait to get mine out as well.

Thank you so much for taking the time to return and post your update!!! To newer members who are starting their recovery or in the middle of getting rads, posts like this are a lifesaver. They give others hope that they too can get thru the horrible treatments and past the worst of the recovery phase. There really is a good life after going thru so much. Thank you very much for giving others the hope they need to get thru the rough days.

Congrats on your husbands progress with his recovery!!!! Im sure he is thrilled to be rid of the peg tube.

Wishing you both a wonderful future full of many good days and good health