Hello everyone,

This is my first post. My significant other was diagnosed with tongue cancer a couple months ago.

HIs surgery was Tuesday so for the past couple months I have been a nervous wreck worrying about so many things that I'm sure you all are all too familiar with. How would he look, Will he be able to speak. Praying that they would take less of his tongue than they originally thought, which we were told 56-60 percent in the beginning.

They removed 70 percent of his tongue and took lymph nodes from the same side of his neck and part of his jaw and bone. They used tissue from his arm and leg to re-build everything. I was expecting 50 percent of the tongue. I was hoping that it would be less. Less than 50 percent gave me hope that he could re-learn to speak and that we could go back to somewhere near our normal lifestyle.

70 percent sounds really scary. The doctors seem to think he will still be able to speak with only 30 percent of his original tongue, and the rebuilt portion, of course. They believe his biggest problem will be swallowing . Today the doctor told him that it is possible he could be on the Feeding tube for life. He is very upset about that.

Here is the good news. He looks great. Exactly the same as before he went in. (Besides the scar across his neck) I was so worried about the jaw surgery. It has been swollen for a day or two now but he looks so good. And he was in really good shape physically so he is healing really well. They expect to send him home in a couple days.

He says he cant feel his tongue at all yet. It's been 3 days. The Dr. said that is normal. He had a ton of mucous and has had to suction his mouth constantly. They have already began the process of removing the trach. They have told him he can't try to drink yet but they did let him swab his mouth with a moist swab thingy, (sorry I haven't familiarized myself with all of the terminology yet).

So, I'm still really afraid about this speech returning to normal after they removed so much of his tongue. And I am really concerned about him being able to swallow. They have told him not to try to talk or do anything right now. I have been able to read some suggestions on message board about beginning to practice moving your tongue and doing tongue exercises as early as possible but they haven't told him to do that yet.

I'm wondering about the swallowing thing. They didn't really explain why they are concerned about that. Is it because they took the portion of tongue that is used for swallowing, maybe? Is it possible that if he works really hard at strengthening it that he will be able to swallow and have the feeding tube (peg tube, I believe it's called) removed eventually?

So, if any of you guys have any answers or suggestion, I would greatly appreciate it.

Thanks so much,

Pam

I only posted my first post about an hour ago and haven't had a chance to read as many of the posts here as I would like.

How do you find out how fast the cancer spread? My SO's doctor has offered none of that information.

I have been very curious for some time now. I wasn't sure if it was even possible to obtain this info.

Thanks,

Pam

Welcome to OCF, Pam! Im sure we can help you and your significant other with tons of tips and info plus some excellent support to help you both. Beings a caregiver isnt easy!!! Make sure you take care of yourself and take a break once in a while.

Your significant other has been thru a major surgery which will take time to bounce back from. The kind of surgery you described must have been a very long, intricate process. Im sure it wasnt easy for you to patiently wait for the surgery to be finished. You may not notice it but your significant other has lots of swelling which takes time to go down. It can be months before its gone. For now try to follow everything the doc recommends... take a deep breath! This is likely to be a long road for you both. Dont worry, we will be here to help you thru it.

The best thing for you both is to discuss everything with the doctor who is in charge of your patients care. Your questions are NOT simple black and white questions. Answering them isnt easy at all. You will see this over and over here ... everybodys different no 2 patients will ever have the exact same experiences or react the exact same way to medications, etc! One may sail right thru everything and another could struggle right from day 1 even when these patients have the exact same diagnosis and on paper as so similar they appear to be interchangeable. What works for one may or may not be appropriate for another patient. This goes for how patients respond to medications, surgeries, recovery... pretty much everything. If you havent brought a dry erase board to help your significant other communicate with hospital staff, please consider picking one up.

Swallowing muscles when not used can quickly forget how to function together. This may be whats behind the lack of details provided? Im sorry but as a group of oral cancer (OC) patients and caregivers, we arent qualified to second guess the reasoning behind why the doctors have done what they have done or guess what their motives were for doing anything. Its best when the doc or medical team are there and talking to you and your significant other to ask them all your questions. If you arent understanding something, remember they work for both of you so ask for clarification until you do understand everything. So much better to get their expert input at the time when they are face to face and can examine the patient if you have concerns about something. Im sure they have many other patients to tend to but remember.... they work for you both so dont hesitate to pick their brains while you have the chance. Before swallowing is attempted a barium swallow test may be given to ensure all the swallowing muscles are functioning normally. Prior to any exercising, especially only a couple days after such a major surgery wait to get the OK from the medical team. Starting exercises now could do significant damage to the newly constructed mouth and cause a medical emergency if something would rip open.

Its not easy but do your best from getting too far ahead of yourself. Try to focus on what is within your control and avoid negative thinking. Over the past 12+ years after my original oral cancer (OC) diagnosis, Ive learned an incredible amount of important medical info and feel like Im now a completely different person living a very different life than when I was first told I had cancer. Looks are NOT everything, neither is speech or the ability to eat. Sure those things seem like they're some of the most important things right now but if every one of those 3 things changed or were gone your significant other still will be the same person regardless of their looks or abilities to eat and talk. All those things seem to be of the utmost importance but surviving is the real issue above anything else. lts not easy to see the big picture all the time especially when being overloaded with learning all the new medical jargon and more about the recent major surgery. Survival and eliminating the cancer are the goals with everything else being secondary. I wasnt able to see this until the day I first walked into the bathroom about a month after I walked into the hospital for my very early surgery. When I teetered my way to the bathroom on my very wobbly legs with the equilibrium similar to being on a small boat in a big storm, I hadnt yet been told what Id been thru so I had no idea it was a month later. Not recognizing yourself in the mirror is shocking!!! Even though I didnt look very good, I survived (which was the real goal) and nothing in the world can take away the person I am inside. The more you read both the posts here and the main OCF site, the better you will understand just how serious OC can be. This will make you a strong advocate for your patient and in time bring the closest couples together with a stronger bond ever.

Hang in there, its a long road but you both sound like you are on the right track . Plus now you have us to help you both get thru everything.

Hi ChristineB,

Thank you so much for your quick response. Although it has taken me awhile to be able to respond, I was able to read it right away and it brought tears to my eyes (as many things seem to do these days.) I'm so sorry to hear about all of the hardships so many of you have been through.

I'm sorry I did try to read over the rules for newcomers but I have been scrolling and googling for the past few months and have come across a few different oral cancer support groups and may have gotten mixed up on some of the rules. I did try to do the signature thing tonight as well as I could. If it isnt right, I can change it or add more.

As I said before, the 2 months before the surgery were really rough and stressful and I've hardly been able to focus very well on anything. I have felt better since the surgery seems to have gone as well the doctors say could be expected and possibly(?) even better than I, personally, expected.

I believe I was getting ready to go back to the hospital that day I read your response and had plans to respond once I got there but as you see, that didnt go as planned...

So, I will update from where I left off and also try to add more information I may have left out before. So I posted on August 2nd. That would have been Friday. His surgery was Tuesday, I read your post Saturday, went back to the hospital that night, got a total of around 2 hours of sleep that night then we got to come home on Sunday at around noon. Well, I got to come home on Sunday. He got to leave the hospital, but his mom felt better to have him stay with her because I needed to get back to work and she wanted to be able to watch after him and especially to help him with his feeding tube. I, personally, also feel better about him staying with her through the week, especially while I'm working and also especially since i still havent been able to clean the house as well as I would like and I was hoping to set things up so he could be as comfortable as possible. But I had also hoped that he would come home on the weekends at least.

Since I'm back at work, I have a pretty long commute as it is, then I go across town to his mom's to check in on him and straight back home to get ready for bed and for work the next day so if anyone responds to my post, I may not be able to respond again until next weekend, unfortunately.

So, I do have a few questions for you all and I will try to get to it...

First of all, One reason I'm worried about getting the house cleaned is because the hole in his neck where the trach was is still not closed up and I know that needs to stay as clean as possible. I have a little dog that sheds and I need to vacuum and dust really well, which will require me, on my own, to move all of the furniture out, and I had wanted to also steam clean the carpets. The doctor, nurses, etc, didnt cover, or tell him to cover the hole that is left in his neck and I, personally, feel like it is looking worse now than before. Would it hurt to cover it?
We saw the doctor on Wednesday, 4 days ago, and I guess I should have asked him but it seemed to me that it was healing better before we saw him. I only noticed the next day that it looked worse, possibly bigger and, I thought it might have pus in it but apparently the home nurse visited yesterday and said that it was mucus.

His mucus problem also seems worse to me now. It seemed like it was getting a bit better before he left the hospital. They sent him home with a suction but it doesnt seem to work as well as the one he had at the hospital. Maybe we can order a better one? And they did give him some robitussin in the hospital but didnt tell us to continue using it. I have read a lot about people having trouble with mucus after this procedure but its all kind of in circles in my mind right now and I cant remember if they said that it gets better or if this is a life-long, constant issue. I really hope not.

He was a smoker for 30 years before his surgery. He didnt quit until the day of the surgery and he hasnt smoked since his surgery. I really hope he doesnt start back. I still havent quit. I have tried slowing down and have had some better days but the stress isn't helping the situation at all. That is another reason I'm not complaining, to him at least, about him being at his mom's. I certainly wouldnt want him to come home and resort to his/our old habits. I really hope that I can quit before he comes home, but that's all on me.

Another question: he only told a couple nights ago that his tongue feels swollen. I dont know if it actually is swollen or if it just feels that way to him because, it actually is a kind of a foreign object so of course it is going to feel different. We went to his follow-up with his doctor on Wednesday, and I asked the doctor all of the questions I could think of. I had taken notes but he hardly asked any questions and since he didnt mention how his tongue felt to me until afterwards, I didnt know to ask. I did ask the doc if he would need any speech therapy or a nutritionist and he said no. He said things are healing well and that he can begin talking now and that talking IS speech therapy. But I have read about tongue exercises, swallowing exercises, etc. and I'm sure it wouldnt hurt for him to try to different things if anyone has suggestions. ??

His jaw is still swollen so maybe his tongue is as well. He was taking ibuprofen before the surgery but had to switch to tylenol because ibuprofen thins the blood. I suppose he could start back on Ibuprofen now but not sure because it has that protective coating and we are having to crush his pills for his peg tube. I don't know if that would hurt his stomach?

Oh, another thing we found out from the doc on Wednesday, there was cancer in 4 of the nodes they removed. The original plan had been radiation 5 days a week after the surgery, now we're told he needs chemo. I've barely had any time to read much about chemo. Of course I know all of the things, i think most people know, like how weak it can make you, etc. but I dont know what to expect other than that. I was already so nervous about the radiation because I feel like, as soon as he begins to possibly have decent, not so bad days, again and his mouth possibly begins to feel better, they will come along with the radiation and ruin all of his progress.

As far as comfort, what do you guys think would be best for him? Should I set up a recliner? He is using one at his mom's now but he says it doesnt matter to him. And how should I set the bed up? Should i try to get a special type of pillow. It seems like I remember reading that it would be best if he sleeps on an incline.

Also, the long term problem that I asked about in the beginning, swallowing...

He has been able to drink some water since they allowed him to start trying but that is about it.
He tried a bite of jello yesterday and couldnt get it down, then tried a bite of applesauce today and couldnt do it either. I hate this...

Luckily we havent had any setbacks but the progress has been really slow this week. I understand that it's going to take time and even can get much worse. I just want to do everything I can to make it as easy for him as possible. Thank you all in advance for any suggestions.

Also I realize this post was really long. I just wanted to add all of the info I can while I have time. I may start new threads about each individual problem if and when I get a chance.

Thanks again,

Pam

I just wanted to post a quick reply to let you know theres no need to make individual posts for each question or problem. That would be several different ones and other members may get mixed up trying to follow along. Im actually glad you wrote so much. It makes it easier to reply when knowing more of someones situation.

One thing stood out in your long reply... your husbands stoma. I dont know if its necessary to cover it or if leaving it open is best? One vitally important thing with an open stoma is NEVERT GET WATER IN IT!!!!! Patients with open stomas can drown if water goes in there. When taking a shower, the stoma must be completely covered so not one drop of water, nothing can get in. I had a stoma from a trach 10 years ago. At that time I was hospitalized for 2 months and cant really remember much about the trach or stoma except when my ENT who was the head of the hospitals ENT/head and neck dept stopped by to check on me and saw my stoma/trach was not kept clean, he was NOT happy. He cleaned it himself as all the nurses scurried around more concerned about getting in trouble than taking care of me. I was moved to another wing a couple hours later. The visiting nurse should be able to tell if the stoma site looks infected but dont ever hesitate to call the doctor and take your husband in to get checked if you see something that doesnt look right.

I'll reply more over the next few days.

Hi Christine,

I sent you a PM in reply to your post, hopefully it went through.

The stoma is closed now so that is out of the way. Yay. I really hated everything about the trach.

A couple more questions...

1. What is the best way to clean the PEG tube? Or do you have to replace parts often to keep it from getting clogged?

2. I may have forgotten to mention this in earlier posts but they removed all of his lower teeth during the surgery. As I said before, the doctors said their main concern would be his ability to swallow. He was allowed to begin drinking/trying to eat as of last week. He is drinking a lot. He says he doesn't have a problem with drinking and he also ate some yogurt and ice cream. He says that he thinks he would be able to swallow anything if he could chew it. I know Christine mentioned having a Barium swallow test performed. They didn't do it at the cancer center because he has the PEG I guess. I don't know. I think I am going to request they go ahead and do it. But I also wondered, is it important that he try to swallow as many different kinds of textures and things as he can, I just keep remembering hearing so much about "use it or lose it".

Is drinking enough to keep those muscles working or do I need to try to get as many different foods, types of foods, purees, etc. to make sure those muscles keep functioning?

I hope all that makes sense. And I know, I'm a huge over-thinker.

Oh, one more question. He has a huge scar on his forearm from the skin graft. Best cream or lotion to use to keep moist, prevent scarring, etc. I went with Aquaphor and Cetaphil (gentle soap) as I know it is Dermatologist recommended for things like laser treatments, etc. But this is a really deep wound so, any suggestions would be appreciated.

Thanks!

Pam

You don’t need to clean the PEG tube. What you should do is to put in a syringe worth of water at the end of each feeding. That’s hydration as well as rinsing for the PEG. It is, however, important to clean the insertion site. Dab it with a wet piece of gauze and then put cream on it and a dressing to cover it. Don’t rub it because it will cause granulation which is very painful for the patient.

Our RO said even if the patient does just dry swallows, it will help the muscles. I am not sure about the need to swallowing food of different textures. I would think if the food is all chewed up, the texture won’t matter. There is difference, however, between swallowing food of different thickness, for example, water, nectar, honey and pudding are words used to signify the different grades of thickness of what the patient is swallowing.

The swallowing test is used to determine how well the swallowing process works in the patient, is there any narrowing of the esophagus or if there's aspiration. They do give it to patients with a PEG tube because they sometimes need to ascertain if a patient can swallow properly because they remove the PEG.

Ty gmcraft. We do flush the peg each time before and after meals. It seemed to be a little clogged but I looked it up on YouTube and found out that we can flush it with warm water. So that's under control.
He's supposed to go for dental work on Wednesday. I don't know if they will finish removing all of his teeth or just the really bad ones. I wish I had checked to find out if he should do the swallowing test before or after the dental work because now I believe we're going to have to wait until after whether that's best or not.

And yes you're probably right. Thickness maybe the word I should have used instead of texture.

Just a tip I got from the visiting nurse — if the tube does get clogged, put in a syringe of soda/pop. The bubbles will push whatever is clogging the tube into the tummy. Of course, if it’s really clogged, you should go to the ER.

Thanks again gmcraft.
His radiation begins tomorrow and they still haven't given him a barium swallow test. I called last week only got to talk to a nurse and the only thing she could tell me is "the doctor hasn't ordered one." !!! Smh
I don't know what to do. I feel like we need to know what he is able to eat and what he should avoid. So far he's still only drinking milkshakes and NutriBullet. Not to mention, the number they gave us for the test is also for a speech therapist which I also feel he needs. Makes no sense.

Hi Pam,

If he has a feeding tube, that’s how he will get his main nutrition and hydration for the time being. What he eats or drinks by mouth depends on what he can swallow at this point. The swallowing test is administered by a speech and language pathologist. I know it sounds weird but they are specialists in swallowing.

If the doctor hasn’t ordered it, it may mean he won’t get the swallowing test for now. I would discuss this with the doctor and ask if he can order a swallowing test, if not now, then some time in the future. My husband’s doctors wouldn’t consider this until maybe 10, 12 weeks after radiation finished. I’m in Canada and we have social medicine, so it meant one has to wait for ten weeks to get a swallowing test. Our nurse told me to ask to be put on a cancellation list and be prepared to go when we got the call. I followed her advice and John got his swallowing test in two weeks! Talk about learning to navigate the system.

Thanks again gmcraft,

Sorry it takes me so long to reply back. I can read all of the responses and look up info from the site on my phone but it is so hard for me to reply unless I have my laptop handy. Which, unfortunately, isn't often.

So, you said that the swallow test is administered by a speech and language pathologist and they are specialists in swallowing. Does that mean that they don't work with patients on speech as well?

I still haven't been able to see the doctor, myself but I am going with him to his first chemo appointment tomorrow and I am, or was under the impression that I would be able to see the radiation doc tomorrow but I'm not sure now but that's another story... Anyway, I'll find out tomorrow...

Newest issue, I hope someone can help with this, and I may start a new post for it, as well but, we are on day 3 of radiation and I am trying to get him to take in as many calories as possible as I keep seeing suggested on this site but he hasn't even been drinking his Nutribullet lately because he thinks he must be full. The reason he thinks this isn't because he feels full. It's because the feeding tube is "holding" or possibly "backflowing" food and/or water in it, even long after he is finished with the meal.

He only began to notice this about a week ago. I'm not sure if it has always done this or not. I didn't notice until he told me a few days ago. Unfortunately I am only just now getting around to asking about it.

He's only getting around 2600 calories from his formula which isn't a lot for someone his height I don't think. And until he started noticing this backflow or whatever it is, he was getting all of those calories plus drinking his nutribullets and milkshakes. Now, he's only getting those 2600 calories and his water because he's afraid it's going to spill out.

We flush it before and after every meal. And we're not having any trouble getting the formula or the water to go in. But after it all goes in, there is some just sitting there in the tube when he is finished. Is that normal?

We also have tried all of the methods we know of just in case it is an issue of clogging including using the soda so I'm not sure if it is a clogging issue or if he really is full????

Oh, and if anyone has any advice on things he should do before his first chemo treatment that also would be great, as I don't get to go to all of his appointments and from what he tells me, they didn't get any list of instructions or paper work about what he should do or not do before chemo.

Thanks again,

Pam

The feeding tube frequently will have residual formula or a little of whatever has been put into it. This does NOT mean there is any problem. It also does NOT mean he shouldnt put anything else into it! If he doesnt like seeing this, I suggest flushing more often with 2 of the 60ml syringes of luke warm water. Flushing after feedings is very important to ensure the feeding tube remains free of any leftover formula. This also helps to meet his daily water requirements.

We have a great many here who have varying experiences with feeding tubes. Too often, patients get their feeding tube then are pretty much left to figure it out for themselves. After a very brief explanation someone who is completely unfamiliar with the ins and outs of feeding tubes isnt able to absorb so much feeding tube info in such a short amount of time. If you havent asked yet, check with his doc or nurses if theres any at home visiting nurses for patients who are new to using feeding tubes. Ive had visiting nurses a few times and they were all so nice, absolutely wonderful experiences with very kind and helpful nurses who took the time to teach me everything they could about feeding tubes.

Hope this helps!!!

PS... Barium swallow tests usually arent done on patients who are just going into treatments. Its more of an after rads/surgery type of test. At least thats what Ive always seen here in the US.

Thanks so much for the quick reply Christine!

I read it to him. Hopefully he will listen to you and try to raise his calories.

Christine has already responded to your question about the feeding tube, so I would just like to mention that the patient indeed gets full after a feeding. I used to try and force John to take more water or even a cup of tea in between feedings and he complained and said,”Do you realize I’m full.” Because they’re taking their nutrition in liquid form, we may not think of feedings as filling, but they are. John’s RO did not recommend, in fact her discouraged me from blending food and putting it in the tube. His point was that the stomach cannot “taste” food and there is a risk of clogging the tube when we put in blended food. I mention this because you talk about the Nutribullet. Talk to a dietitian or his doctor about the amount of calories he’s consuming and if, necessary, they can switch him to a high calorie Ensure/Boost or whatever.

I've never put his nutribullet in the feeding tube. He is able to drink it. The only thing we put in the tube is water and formula.
We also have boost for him to drink. He doesn't "feel" full.

The current issue is his concern with the feeding tube holding formula.

Thanks

Sorry, I misunderstood your point.

Do you not have an Oncology Dietician, with whom you can ask questions about his particular case & concerns??

Crystal

If your husband is able to drink shakes then by all means have him drink as much as he can. The same for eating. Swallowing is a function that is surprisingly quick to have problems with when its not used on a regular basis. Every single day he should be swallowing as much as possible thru out the day and evenings, whenever he is awake. People who only drink frequently do not get the feeling of being full how people usually feel after eating a big meal. Its not easy to feel full when only drinking, at least with my experiences I dont think so. When a patient/survivor is unable to eat normally, they often feel hungry all the time. If your husband can eat then he should be encouraged to eat as much as he wants as unfortunately there probably will come a time during his radiation treatments he is unable to eat, swallowing is painful, food/drinks arent tasting like they should all adding up to become very challenging for many patients causing major issues with their intake. Right now the more calories and water, the better!!! Even having a ridiculously high 5000 calorie daily intake wouldnt be too much for someone going thru rads/chem. Your husbands body is burning up calories at an increased rate trying to fight the cancer, rebuild its damage while also counteracting the treatments damage as well. Sounds like you are doing a GREAT job with being a caregiver!!!! Your husband going into rads/chemo as strong as possible even if having a few extra pounds is a very good game plan!!!

Im very glad to hear you are already using his feeding tube for the formula to help your husband get balanced nutrition. There may come a time when the feeding tube is all he can do for all his intake. By that time you will be a pro with handling the feeding tube!!! I may have missed you mentioning this but if you havent already done so, the feeding tube is an excellent way to take medications. Just use caution with crushing medicines, some can NOT be crushed like time release medicines (even over the counter time release meds). I suggest asking the pharmacist before trying dissolving any pills with water for taking it thru the feeding tube. The doc can write prescriptions for liquid form if you or your husband ask. Liquid meds are so much easier going thru the tube than struggling to get down a big horse pill. Use caution when or if you decide to try blending real foods to put thru the tube!!! Feeding tubes are designed to work with prescription formulas, not real foods which can negatively impact the longevity of the tube, causing it to breakdown or clog. Plus the calorie and nutritional content is almost impossible to track which could in the end counteract your husbands treatments. Any number of things we take for granted could cause issues with rads/chemo, even a simple vitamin could interfere. Thats why its so important to have open communication with the entire medical team so everyone always is on the same page working together for the common goal of eliminating the cancer.

Your husbands feeding tube is there to help ensure his intake remains high enough to keep his weight stable, keeping him strong thru the progressively more difficult rads/chemo treatments. The further he goes with treatments, the more he will notice changes and side effects. Im pretty sure I previously mentioned to be on alert for any differences in kidney functions and his hearing as those are the start of permanent health problems and need to be brought to the attention of his medical team on his next treatment day. The doctor must be made aware of any issues he is having to ensure they are taken into consideration before any further treatments are given.

Bets wishes with everything!!!

Hi guys,

No problem Gloria. (Just now noticing your name at the bottom of the post sorry....)

I also just noticed that, I probably need to update my signature. It looks like there are a few misunderstandings. I realize I rambled a lot in the first few posts especially, so, just to summarize, he has had a subtotal glossectomy so his main source of nutrition is the feeding tube and some days it is only the feeding tube. He has done pretty well swallowing liquids since his first week out of surgery which was around 6 weeks ago.

Today was the first day of chemo and his 4th radiation treatment. So far, his only complaint from that is dry mouth.

I was FINALLY able to ask the doctor about the swallow test today and he seemed to get really aggravated and/or defensive about me asking why he hasn't gotten one yet. Basically, he (the radiation doctor) doesn't think it's important right now after all that he has been through with the surgery and all.

Again, and maybe I'm getting ahead of myself, but, I was just thinking that BECAUSE of the surgery, it might help us to see what he is able to eat and drink right now and give us an idea of what he should and shouldn't try to swallow prior to and during radiation therapy, if that makes any sense. His doctor certainly acted like it didn't make any sense and acted like I was questioning his authority or something, which I wasn't, but anyway.... I guess he can just continue doing his swallowing exercises and drinking for now. I was just hoping to be able to blend him some foods if possible to keep his weight up during radiation and chemo treatments but he, personally doesn't want to do the swallow test or anything unless the doctor orders it so I'm going to leave it at that right now and try to hold on to what little is left of my sanity....

It looks like I have to go back and look at the other posts so I can remember what else I was trying to answer... lol

Hi Crystal,

Was just told at the chemo appointment today that there will be a dietician there to speak with him about his case.

Maybe at the next chemo? Idk...

Thanks,

Pam

Thanks again Christine,

I am going to update my signature because as I said in the earlier post to Gloria, I guess it there was some miscommunication as he is only able to get most of his nutrition and his medicines through the tube.

I wanted to follow your advice on the milkshakes and eating but that is why I thought the swallow test would be helpful (after surgery)

I felt like if he had the test prior to radiation, I would be able to get him to eat more but no luck with the doctor on agreeing with me on that. And if the doctor doesn't agree, he doesn't listen to me...

Even though he has been able to drink plenty and eat some blended soup, he only does it when he "wants" to. Oh, and we did have a home nurse but she doesn't come anymore as of last week, I believe.

I guess I'm going to ask this oncology dietician, who I just found out about today, about the protein supplements next week.

Edit: Oh, I just remembered, he may not get to talk to the dietitian. Every time someone talks about his nutrition then they'll say "oh nevermind you're on a peg tube, you should be fine."
It seems like I heard that about two or three times just today. And this may be where I'm being misunderstood or I may be misunderstanding something but I feel like he needs to get in more nutrition than just what he's getting through the tube but mainly I feel like they are forgetting about him using his swallowing muscles which I guess is my main concern.

Thanks again,

Pam

Hi Pam,

I've also had a subtotal glossectomy with a free flap reconstruction. I had around 85% of my tongue removed. I have a RIG, which I think you call a G-Tube (it's similar to a PEG, but is fitted under x-ray and has a balloon to keep it from coming out.) I've also had a lot of teeth removed too.

I have nutrition shakes but am able to swallow, so I have been trying soups, smoothies, yoghurts etc to give me variety.

I've just caught up on where you are with your husband.

Here in the UK, we don't have the swallow test until after radiotherapy and that's of the speech therapist thinks its required. It's because it puts more stress on the patient when they're trying to recover. It's a last resort thing. The speech and language team (SALT) teach patients how to swallow and talk, which will be the same for you.

The back flow into the tube is totally normal. I too had a little "oh my gosh" moment when I saw it, but I spoke to my nurse who said it's OK. Liquid will enter all avenues and this is just another avenue for it to go in.

I love that you're making smoothies and shakes for you husband. That's really helpful. I find there are some days where I'm just too tired, or my mouth is sore and I don't want to take things orally, so that's when I use my tube more (I currently use it for medication that I can't swallow and for a protein drink that tastes disgusting, so I'm happy to bypass my mouth on that one ) As your husband is going through radiatotherapy, he just might not be in the mental state to want to swallow nutrition. Yes he needs to keep up with his swallowing throughout the day, but even dry swallowing will help.

I've not started my radiotherapy and chemo yet, I get that joy next week. I have 33 radiotherapy sessions and 3 chemo ( 10 hours long, so overnight in hospital for each session) plus I'm having immunotherapy as I'm part of a clinical trial. These will all make me feel very tired, plus whatever other side effects I'm going to have.
I've told my husband that if I'm too tired to physically take nutrition orally, then he is allowed to take over and put my nutrition through my RIG. He must encourage me to sip water as it'll ease any sores in my mouth and also keep up with my swallow, but he shouldn't push it as I know I will get defensive.

So it might be worth chatting to your husband an dasking him if he's just too tired to take nutrition orally. If that's the case, ask him how you can help him.Things might have changed for him of what he wants and he just doesn't want to ask or burden you.

I hope this helps you and your husband.

Hi Dizz,

Thanks so much. You and he are going through so much of the same thing. You are just a little behind him (on the timeframe) and you seem to have such a great attitude about everything just as he does. You guys are soldiers. All of you are. This has been so rough on me emotionally and I'm not even going through the hard part. But I have always been much more of an emotional person than he is, and although I have complained many times about him having the emotions of a rock, lol, in this case, it has been extremely helpful.

Thanks for explaining to me about the swallow test and the tube. It would have been helpful if the doctor would have been more helpful or thorough in explaining, or listening, actually. I just didn't like his attitude.

I had hoped to be able to get him to eat more and try different things like you are doing and his attitude about everything is to only do it if the doctor tells him to do it. And, don't get me wrong, I'm not trying to go against doctor's orders... He, honestly, is just a very stubborn man and always has been and he doesn't ask questions when he goes to the doctor without me.

For instance, I tried to tell him that he needs to ask about fluoride trays because I had read so much about them on this site. But he went to the dentist twice without me and did not ask, and they did give him fluoride toothpaste, which he doesn't use as much as I believe he should, and, he actually still has a couple of teeth which needed fillings that he didn't get fixed. I'm worried about him on that but, at this point, I can only hope for the best.

He is doing his swallowing exercises and he is still drinking his shakes and smoothies so I will try to lay off on getting him to try eating other things and just continue to make them. I know he is going through so much already and that I get on his nerves when I push for more. I just want the best end result for him. But, at a certain point, I know, I just have to let him do it his way.

I wanted to add protein to his nutribullets but don't want to begin without asking the dr. about it first and he pretty much ran off on me the other day in the middle of me asking about the swallow test so, I will send a note with my SO when he returns for his next dr. visit (since I'm,unfortunately not able to attend every appointment with him) and possibly find out what protein powders are allowed and which to avoid.

I believe you he have the same amount of radiation treatments and he was offered the 3 doses of cisplatin or 7 smaller doses. He chose to have 7 weekly treatments as he was concerned with the hearing loss side effects. But when we actually went for his chemo, they had changed it to Carboplatin for some reason and didn't even tell us. We didn't know until the nurses told us and they had no idea why it was changed. I'm curious but at the same time I'm glad that he won't have as many side effects. I'm a bit worried for you on those 3 big ones but least you will be able to stay in the hospital and rest and be looked after well. I looked at your latest update and hopefully I will get a chance to respond to it soon and will definitely check in to see how you are doing. Wishing the best for you!!

Hi Pam,

I have found the Dr's don't always tell you everything. I'm glad I'm on this site as I've been able to create a list of questions to take with me to appointments. My medical team are all used to me taking out my phone to get my list out.

I think you are doing a great job. It must be really hard for you when you want to give your husband the best chance and then he doesn't ask the questions that'll help him. You are amazing and so strong. Anyone who has a loved one going through cancer, who is being so supportive, are amazing people as it's not an easy journey either and it is easier for them to hide from it all.

I wonder if your husband's reluctance to try different foods, until the Dr says he can, is his comfort zone. He might have a fear of choking on something and isn't ready. I know that when my speech therapist said she was happy with my swallowing of water and then gave me a pot of custard and a spoon to try in front of her, I was terrified. I put teaspoon of custard in my mouth and didn't know what to do, my mind went blank. It was like performance anxiety I managed to swallow some, but had to clear my mouth out with water.
As I've got more confident around swallowing I've realised that I need strong flavours to help me swallow and enjoy the food. Vanilla custard is too bland for me, so adding other flavours such as orange blossom water, rose water, coffee etc have helped. So when your husband is ready to try then it might be useful for him.

With using the toothpaste, would he be up to rub a little bit around his teeth, rather than brushing his teeth. My dentist at the hospital said I need to use fluoride toothpaste twice a day, rinse and swallow the residue, and to make sure I drink plenty of tap water (in the UK we have fluoride in our tap water) to give my teeth the best chance. At the moment I'm struggling to clean my bottom front teeth due to the stitches in my bottom lip, but I can rub toothpaste there if I use my little finger to put the toothpaste on.

I'm being admitted for an overnight stay for my chemo, partly for the length of time it takes but they also want to keep me under observation. I have appointments booked with my team every Monday for 7 weeks and I can go and see them anytime throughout my rads treatment. I know it's going to be hard on my body, I'm also having immunotherapy - all 3 treatments cause fatigue so I feel my bed will be used quite a bit over the oncoming weeks.

Thank you for looking out for me, I will look out for your updates too.

Pam, I just thought I would mention that my husband was not using his fluoride trays while he was getting radiation because of the mouth sores. It was supported by the dentists at the hospital. However, after the radiation was over, he had to get back to them. So, maybe your husband still has a chance to get the trays later.

Hi Dizz,

Same here. I have always been really big on researching my own problems and yes I take my phone with me to his appointments and have notes galore in it, lol

Thank you. I'm trying... I have my days...

I think his reasoning is more of he just wants to get through this and then go back to eating steaks and burgers. lol Really though, we have talked about this. It was the same in the beginning, before the surgery while he was losing weight because his tongue was so swollen he had trouble eating, I tried forever to get him to let me make the nutribullets and try cooking softer foods for him. He kept trying to tell me that as soon as the surgery was over he could eat and gain back the weight. I kept telling him, It's not going to be that easy.... And finally just maybe a couple weeks before the surgery he agreed to try the nutribullets. This was AFTER he lost about 25 lbs.

So now, he knows that he has to keep the tube throughout the radiation treatments but I don't think he has accepted that it may be even longer than that and possibly, (but hopefully not, fingers crossed,) MUCH longer. I'm trying to prepare him for that, just in case and he says that if he hadn't lost all of his bottom teeth, he could eat. He "says" that his problem is that he can't chew food and that if he could chew it, he could swallow. (my reason for wanting the swallow test)

As for the toothpaste, I have made that very same suggestion. So far, he just isn't listening.. My birthday was this weekend and I have had an extremely emotional week. It's kinda funny, I can talk and argue and reason until I'm blue in the face and he will not listen or will argue with me but if he sees me cry, well, I don't think he knows how to handle that. So after seeing tears (I am certain that is what did it, lol) He promised me that he is going to start listening to me. lol

I'm not sure how long that will last but I reminded him today of his fluoride and his calorie intake and that he is supposed to start listening to me. He huffed and puffed a little but he said ok. smh So, we shall see :}

Well, I Said, It's kinda funny and I'm sort of laughing about it now, but it really isn't funny at all that I have to get pushed to that point to be able to get through to him. Smh…

I did Not know that he is supposed to swallow the residue though. I'll tell him about that, I'm sure he'll be overly excited that he has a new thing to add to all the others. lol Seriously though, he is just a really simple man. He likes to keep things simple Finish one thing before beginning the next, etc. I know this is a lot for him. I really do hate it But again, I just want to prevent future problems for him, for us...

Oh, you said you have stitches in your bottom lip, I think, that since they removed ALL of his bottom teeth, that his tongue is now stitched to the floor of his mouth. He said it feels like it is. And he still doesn't have much movement with his tongue. Are you able to move yours yet or do you have any idea what to expect with that?

I have one more day off work this week so I may get a chance to reply again soon but yes please keep us posted with how you are doing. I will be able to read on breaks if nothing else.

Btw, his first week of treatments has gone pretty well. He has constant hiccups from one of his medicines and some dry mouth and sticky mucus but he says that is only if he has dairy products so I think we may have to drop the milkshake or try making it a different way.

Best wishes,

Pam

HI Gloria,

Thanks, I think that he could still get them if I can just talk him into going back to the dentist. But then getting him to actually use them may be a whole new battle.

Wish me luck.

Hi Pam,

I'm so glad he's not having too many side effects so far. Would it be worth using a fruit juice in the smoothies instead of dairy? Although it might be too acidic for his mouth.

My flap is also sewn into the flow of my mouth and into my cheek. I am able to move the back of it which is good, apparently I'm not supposed to be able to but the sliver of tongue I have left is quite strong. This movement is helping my speech and I'm hoping to be able to move food a little bit.

I was told I would need the tube for around 6 months. Its not the end of the world but it does encourage me to push on with my swallowing, even doing some dry swallowing helps.

You are doing so well. I expect you do have you days. I hope you get some respite too. You need to look after yourself too.

I can imagine you in an appointment with your questions, it's exactly as I am

I'm in hospital for an overnight stay as its my first chemo & immunotherapy dose. Tomorrow morning I start radiotherapy.

Wish me luck 🤞

Hi Pam,

I had the same fights with my husband all through. I believe until the patient gets hit with problems like taste changes, weight loss or swallowing pains during radiation, he/she can’t really comprehend what it’s going to be like. My husband did not read up on anything about his treatment at all and when he got hit by the side effects, it was devastating for him. John loved jello and when swallowing got harder for him, I suggested getting him some jello as a treat. He was happy about it. However, he threw a temper tantrum when he realized the jello tasted metallic to him and it was not at all what he’d imagined it to be. Another time, using a recipe I got from the hospital dietitian, I made him a Moroccan dish, which he thought he would like. But when he realized it had to be blended so that he could swallow it, he simply refused to eat it. At Christmas, his MO gave him permission to drink two glasses of red wine, but it turned out to be a total disappointment to John because the wine at that point tasted like sour grape juice.

It was very frustrating to me because, like you, I tried everything I could. John thought he could waltz through the treatment and go back to his old life. He was a big and strong guy, so not being able to impose his will on his own “weakness” upset him to no end. He would tell other people that I was quite “knowledgeable” (actually from reading the posts on this forum), but it did not make him any more co-operative.

I am not minimizing your effort, rather, I just want to say that i’ve been there before and I can empathize. I understand how hard it can be. The hard part about caregiving is not the physical work, it’s the emotional support that we have to give, and at a time when we ourselves feel we need emotional support big time. That’s how I saw it.

BTW, do you have a Waterpik? Using the tongue scraper attachment on the lowest setting with a capful of magic mouthwash mixed in with the water does wonders for removing the sticky saliva. I learned this from reading posts here. John used to say it was the best investment we had made.

Do keep posting, even if it is just venting your frustrations. We will try our best to support you.

Gloria, thank you for the waterpik suggestion. I shall purchase one of those, with tongue scraper, ready for when the mucus waves hit.

I wish in the UK we had magic mouthwash. Its not a thing here, sadly.
I know I'll have a fluoride mouthwash, but nothing to relieve pain.

Hi Dizz,

Yes I do use only fruit and vegetables and I sometimes add fruit juice in his NutriBullet so I can continue with those. We will just have to not do the shakes anymore unless I find a substitute without dairy.

Your flap and stitches sounds a lot like he says his feels. I think it's the same with him that he's able to move it from the back just a little.

Thank you again. Yes, you're right. I do need to give myself a mental and emotional break somehow. Maybe I'll think of something.

Best of luck to you Dizz! I'm always wishing the best for all of you guys. Hoping you breeze right through!! Keep us posted.

Hi Gloria,

Yes! I feel exactly what you're saying!

He doesn't read anything either and he really doesn't want me reading it to him. 🙄🥴 But sometimes I do, if it's something I think he really needs to hear. And he tells me to stop reading about it. And he's probably right I think I do put too much time into it and end up driving myself crazy I need to find a semi happy medium. If you can call it that. Nothing "happy" about this situation.

Aww, . That's sad. I know it has to be so hard on their side and no, I don't feel like you're minimizing my effort at all. I totally get what you're saying.

I haven't bought a waterpik yet I did run across some posts suggesting it and so I looked at one, 1 day when I was out but I hadn't researched about it too much yet and didn't know exactly what kind to buy...

I will definitely look into that and the magic mouthwash. We don't have any of that either yet.

Thank you guys so much again. I will check back in soon.

Awww Dizz_zzey,

Now I'm upset that we cant get you some magic mouthwash. 😕

I bought my Waterpik at Costco. For the price I paid, I got a counter-top model and a travel waterpik. So it was very good deal. The counter-top model is the one with all kinds of attachments, including the tongue scraper.

Dizzy, I was surprised to hear that in the U.K. you don’t get the magic mouthwash. It’s used to numb the mouth before eating. Although I believe it’s only good for about 15 minutes or so.

Thank you!

I will check into that.

Hey everyone,

We are on week 3 of radiation and the painful swallowing has begun.

Any and all suggestions for relief would be helpful. Does anyone know the best pain medication and any other tips?

He is using honey before and after radiation. I am going to check on magic mouthwash but for now he isn't taking anything for pain. Is there anything in particular that may help?

I read about an aspirin gargle and warm tea, broths. So far, that's all I've found.

Thanks,

Pam

You mentioned honey. Is that Manuka Honey? I had forgotten all about it as I was already thru rads when I first heard of it. Back then no published study showing it was beneficial had been done yet. Unfortunately OCF being a strictly science based organization could not get behind something untested. Theres far too many miracle cures on the internet where predators always seem to make things sound beneficial, convincing everyone whatever they are currently peddling is the best thing ever. Im not sure exactly when Manuka Honey's study announced their results but it was confirmed to be a good, helpful item. There have been several here who used the Manuka Honey on mouth sores and for their sore throat. Everyone who tried it, always praised Manuka Honeys healing properties. Hope this helps!!!

Hi Christine,

It was actually the cancer center who suggested swallowing honey 15 minutes before and after radiation. They didn't specify what kind but I had some local honey. I use it myself because I've heard it helps allergies and other things. So he has actually been using that. I hadn't heard about manuka honey until you mentioned it but we may try it.

Thanks!

Hi Gloria,

I've been quite busy for a bit but I thought I would let you know that I bought the Waterpik you suggested. I didn't realize it was going to take forever to ship so I just received it last week but I still haven't been able to get him to use it. Although, I really haven't had time to study it much and see how it works either so maybe I can do that this weekend.

I was wondering though, you suggested the tongue scraper. He probably shouldn't actually use it to scrape his tongue, should he? Since he had the operation and all... Did you mean to just use it at the back of the tongue? Also, they haven't given him any magic mouthwash. They did give him nystatin for thrush and when he actually did ask about the magic mouthwash, they told him that the nystatin was a version of magic mouthwash... Anyway, I think the thrush is almost gone and now we have only 2 weeks left. Also, he hasn't been eating so maybe that is why they didn't mix anything else (such as lidocaine) with the nystatin. I'm not particularly happy about him not trying to eat but he is still drinking his water and he's getting his nutrition through his tube. His energy has been low so I have suggested he try to drink a Boost but he hasn't and I'm not going to push it. I'm just letting him do it his way. We don't have much farther to go. I hope....

Hope you all are doing well.

Pam

Pam, the tongue scraper is used instead of the jets which can be too powerful on a sore mouth. Use the tongue scraper for cleaning out the ropey saliva, don’t scrape the tongue with it. Remember to use warm water in the tank and turn the machine on its lowest setting. He can try using the Nystatin one time and then not using it another time to see which works better for him. At this point, he is probably quite fatigued and he might not even want to get up from his chair. So, maybe keep the Waterpik in the bathroom he uses and when he goes to the washroom, he can also clean his mouth,

It’s good he’s still swallowing liquids. There’s probably not much else he would like to swallow now, what with taste changes and sores. My husband lost all interest in things at this point. I loaded up the iPad with all his favorite shows so he could watch in bed. He didn’t watch even one show, he only wanted to sleep, he was that tired.

Thanks again Gloria.

Yes, he is very fatigued and isn't trying much else right now. . Only one more week...

Hey everyone,

I had to update my signature again. I have had a copy of these pathology results for awhile but I dont really understand how you all do the abbreviations exactly. Also, some things I read on the Path report didnt match what we had been told by the doctors.


For example, I wasnt aware until speaking to the doctor last week that they have removed (at least part of) the floor of his mouth.

After his radiation, chemo, side effects were all finished, we finally were able to see the speech therapist. He had more movement in his tongue (the part that is left) but I was wondering why the flap seemed to still be tethered to the floor of the mouth and whether that would change. So now, I have been informed that the flap is part of the floor or his mouth and so it will remain attached and nothing else can be done. (?) When I asked if there is a possibility of some type of dentures; implants, ect., the answer I got was that "dentures wont really help if he isnt able to maneuver food in his mouth". Smh. I'm trying to remain hopeful but that certainly didnt help.

So, we originally were told that his long term problem would be swallowing. He has done well swallowing liquids all along. The actual problem is he has absolutely NO way to maneuver the food once it is in his mouth. (I'm not sure if it matters but I tried changing the title of this post from "problems swallowing" to "problems eating "as well as updating the signature.) He has been able to eat pureed soup and pudding. And I had noticed that everything else he has tried gave him trouble by getting stuck to the roof of his mouth, such as cheesecake and mashed potatoes and gravy. I kept thinking that surely they would be able to release that flap or something but I guess not.

Anyway, I've been trying to read, research, find some tips to help him with eating, (maneuvering food in his mouth) without much luck. I did run across something about dentures with a prosthesis. Not sure if that is an option but please let me know if anyone knows about these or has any other tips.

Hope you all are doing well

Thanks,

Pam

Hi Pam,

Have you read any of Tamvonk’s posts? She was a very active member on the forum a couple of years back. Her husband had a total glossectomy but has been able to eat and swallow. Maybe reading her posts will give you some hope. Personally, I have no experience with tongue cancer so I’ll leave Tammy’s posts speak for themselves.

Thank you Gloria,

I recall seeing that name before. I will do some searching.

Thanks!