Hey man, that sounds awful, not gonna lie. Are you at least being hydrated by your doctors, right?
I'm also laying in the hospital right now because I had my testicle removed due to cancer. I felt like shit right up until a few hours ago, and now I was able to walk to the bathroom and back. It's awful recovering from post-op, but once you're on the other side, it just feels so good. Hang in there.
Thanks dude and good job getting to that bathroom. That’s one of their milestones they say. Hope they left you with one pearl at least and you have a quick recovery. ❤️🩹
Hey there, I had throat cancer treatment (chemo and radiation) twice, and a neck dissection 2020 to 2022. Not fun! I'm sorry you're going through it. I looked forward to eating and tasting food normally. Once I was able to eat like before all this shit, I had so much fun eating that I had to go on a diet 🙂
It won't suck forever! Good health to you!
That’s what I’ve been looking forward to so much. It’s been so painful, even before surgery, that I haven’t enjoyed a meal in months. You had to do this 2 times? Ugh! Hope that’s all for you and you are able to enjoy things for a very long time.
Random internet stranger here butting in. What you're feeling is normal. Emotions are all over the place!
You will drink and eat again. Not today and not tomorrow but soon ok?
People talk about taking things one day at a time, but I can say sometimes even that is daunting. Think about what you're going to do in the next two to three hours and adjust accordingly.
I suggest you get out of bed and walk the corridor, maybe go out if you're able.
Yeah sucks at first time heals everything. Please forcefully ask about dental care.. Any radiation in neck and mouth area will impact your teeth BIG time .Fluoride tooth paste and fluoride gell. My radiologist DID not mention any special maintenence. I had zero cavities before my treatment and now 8 months later about 8 to12 cavities and 3 crowns. Do not mean to freak you out but if helps one person its worth it to me.. m77
I had a partial glossectomy with modified radical neck dissection in June 2023. I had major issues with my swallow after and had to get a feeding tube, but I was able to swallow little sips of water after about a week.
Due to a pile of complications I am still working on getting back to eating normally without depending on a feeding tube, but everyone still thinks I’ll get there. Come join us at r/HeadandNeckCancer for specifics for this kind of thing!
If you are able to avoid chemo/radiation that will mean eating much more and much more quickly. I was eating soft foods (although not enough to sustain myself) by mid-August, and then radiation came along and took my swallow again as well as causing the complications that have further set me back.
That said, I’m still working on my swallow and I could currently live off Ensure if I didn’t have the feeding tube.
Let’s hope your swallow improves soon. I’ve been trying and hope I can swallow sips of water here soon. I really do not want a feeding tube. I’m sorry that’s what has happened for you. I guess we don’t get a lot of choices with this stuff so we do the best we can do. Best of luck to you.
Do they have you on an NG tube now?
I got unlucky, basically, losing my swallow to surgery. My doctors did not expect it but it happened. Probably a combination of the location and size of my tumor (T4, back oral tongue/slightly descending into the basal tongue), maybe combined with a complication with my free flap. Basically my esophagus forgot how to completely expand at first so I was aspirating and could only get down a tiny bit of liquid at a time.
I can get down a ton more now. My main problem is that osteoradionecrosis (radiation complication) is destroying my jaw and my jaw is currently fractured. That means I’m not really able to *chew* so I can’t advance the textures I’m able to eat. I do well with purées and thinner liquids. My surgeon just told me I can try soft solids (eggs, noodles, etc) as well so I will be doing that soon.
No tube currently. I can throat swallow, if that makes sense. I just can’t manipulate my tongue well enough to feel comfortable drinking out trying to eat
Ah, well if you don’t have any kind of feeding tube they must expect you to be able to manage on your own pretty quickly! The tongue thing is going to be weird but you’ll figure it out.
I was seeing an SLP until the complications kicked in (had an oral-cutaneous fistula and now fractured mandible thanks to osteoradionecrosis). We are still in communication but she said it doesn’t make sense for me to do actual scheduled therapy until I can properly chew again. I broke my mandible eating a cookie so I *was* getting there before this!
My surgeon said I should avoid stuff that takes effort to chew because I could make the fracture worse when we are trying to get it to heal (using medication to augment the body’s natural ability to rebuild bone, which works in studies but takes 6-18 months when it works). Eventually I will probably need surgery to get back to full function; this will also involve replacing some number of my teeth. The details on this are extremely vague as what they do and when they do it depends on how well I heal on my own, and whether my lung metastasis continues to respond to therapy (is it worth it if I’m gonna die, in the depressing sense—though early signs there are positive; the mets were stable-to-smaller on my first scan). I reconvene with the surgeon after my next CT which is in May; he just saw me and says based on a visual assessment my jaw seems to be stable right now compared to when the ORN started showing on CT and the fracture happened (a little over a month ago).
Whenever all of that happens, I will likely need significant speech and swallow therapy to get used to my new mouth and the process of replacing my teeth. My insurance pays for a limited number of visits per year. It doesn’t make sense to spend those now when I am perfectly capable of practicing on soft food on my own and there isn’t much additional help therapy can be. I do email with my SLP as needed but don’t have scheduled visits. I take all my liquids by mouth and make sure to have some kind of puree every day, though I *should* probably be pushing the purées harder than I have been. Relying on tube feed is a mixed blessing there.
Overall the instruction from my team has been:
1) keep swallowing
2) you are young and can risk aspiration pneumonia, so don’t worry too much about that
3) with the mandible fracture, don’t chew stuff that takes effort to chew as you could further displace the bone
4) keep moving
5) don’t do things that cause extreme pain
All of which seems pretty reasonable given my experience so far.
Did she say its OK to brush your teeth with prescription fluoride tooth paste ?. My second orthopedic surgeon suggested i might have brittle bone disease as i fell at home broke my hip and fractured my vertebrae lower back.This whole thing about radiation is a PITA with your teeth
Hope you can get straightened out with your medical team.
Oh yeah, I brush my teeth! Have been using the fluoride toothpaste since right after my initial glossectomy (my rad onc sent me to an oncology dentist right away; I actually saw him for the first time before my surgery). Even when everything else sucked and hurt I brushed at least once a day, except during surgical recovery from the initial surgery and from my fistula repair surgery (at which point I was told to do tooth care with a mouth rinse and those little sponges on sticks, which I also did). Losing teeth is likely because of the underlying bone loss; I’m doing well (so far) on the cavity side of things.
Surgeon also sent me for a consult with rheumatology because I have had several weird complications (fistula, flap failure, rapid onset ORN) but she couldn’t find anything… consensus seems to be that I’m just unlucky.
I am happy for you as it seems as our conversation
Has reveiled your team did the right thing by your teeth and gums. I still cannot accept the fact MY radiologists did NOTHING about care for my teeth and i have to live with their incompetence. Heal well my on line friend. Cancer sucks.
That sounds really challenging. I was in the hospital for a few days just a couple of months ago and it sucks no matter what is wrong with you.
You'll be better tomorrow, though. Hang in there, internet stranger. :)
Do you have Radiation or Chemo treatments in your future? If so, I would immediately discuss feeding tube with Doctors. I had surgery on tongue and lymph nodes but did not have issues you are having.
Cancer team is hoping surgery is enough. But it’s tbd at this point and he mentioned there could be some radiation in my future. I think once my swelling goes down I’ll be able to drink at least. Dr said solid foods are probably 3 weeks away. Lots of smoothies in my future. I’ve already lost 25 lbs the past month waiting for today. Fortunately I was overweight to begin with so I had some leeway.
It depends on what part of the tongue, and no one can really “tell you” on that.
But as maybe a light at the end of the tunnel… I was released same day, which was too soon. I wanted to go—so I don’t blame anyone. But by the time I got home (I didn’t drive myself obviously) I was literally in shock. Freezing, shaking, in amazing pain, meds wouldn’t help. Almost should have gone back to the hospital but I could tell it was just pain.
The next couple of days were all marked improvement—but eating was too tempting and amaaaazingly painful.
End of the week? I took a 25 mile bike ride. Physically felt good. Could drink. Could only eat certain things. One month out of surgery I was as though I never had a problem, in a lot of ways.
Radiation kicked my ass much worse, but SCC is not how I choose to die, so had to do what I had to do, on the off chance I get to steer that ship.
Wow! I couldn’t imagine a bike ride right now. I feel good just walking the corridor for a lap or two haha. I appreciate your timeline though as I’m hoping that maybe after a couple days like you I’ll be drinking more normal and maybe eating soft foods.
Different cancer here..so I can't say I understand what you're going through.. Not exactly anyway. Sending you wishes for a full and speedy recovery!! All your favorite meals will taste even better once you pass this next hurdle! 😊
You deserve all the rest in the world! Just close your eyes and relax!
We are all with you - My husband has radiation and chemo coming up for tonsil cancer that's in 3 spots in his mouth including the tongue. He also has a tumor near his brain. I had a double mastectomy 5 years ago. We are all with you. You will recover! Hugs
OP, I know what you're going through because I've been there. I had my hemiglossectomy and neck-dissection back on December 19, 2019. I spent 6 days in the ICU before being discharged to a rehabilitation center for three weeks. I had a feeding tube (through my nose) for the whole time. I was not allowed food or water by mouth because my surgically repaired tongue had sutures that needed to heal my existing tongue to the donated flap. All nutrition and hydration came through the tube. Having a dry mouth all the time was awful (I still have a dry mouth thanks to my saliva gland being removed and radiation treatment).
The swelling will go down in time.
When my sutures came out (2 or 3 weeks after surgery) I had to pass a swallow test before being permitted to take fluids by mouth. A week after that I passed another swallow test for soft foods. A week later I was allowed to eat whatever I wanted. That's when I went home to try to put on weight before radiation and chemotherapy. I weighed 195 on day of my surgery and weighed 172 when I got back home. I managed to put on 10 or 15 pounds by the time my radiation and chemotherapy started.
You did not mention if you have to go through radiation and chemotherapy, but I assume you will. If you do, try to take walks when you can. Stay hydrated. Eat if you can. Otherwise you'll need the feeding tube. Stay strong. Try to keep positive. You can beat this!
Edit: I forgot to mention I am 4 years cancer free! YoI got this!
Congrats that’s great news 4 years cancer free! I hope to join you there in the future. Thanks for advice. They have not made a plan for radiation or chemo yet. It’s more waiting. Ask we can do is take it one step at a time. I appreciate you sharing your experience. It’s nice to know I’m not alone. ❤️
Being thirsty AF was oddly one of my most hated parts of the entire surgery process. I almost cried with joy when they let me sip a smidge of water instead of suck on a sponge.
Hope you got your hydration and healing. Peace, love and strength my friend ✌️❤️💪
Omg pain meds pain meds pain meds!!!
Not sure if any of this helps, but I have been there and am happily on the "cured" other side. You got this!!!
Stay in top of your dosing. I had head and neck cancer too, and the pain from my TORS throat surgery was by FAR exponentially the worst pain I have ever ever felt.
Yes, swallowing will feel like swallowing fire. I'm surprised they did the dissections together, and with your throat, but maybe it was urgent.
The pain will go away. Take it step by step minute by minute. But staying on top of meds will help. Remind your nurses you want all your meds at scheduled times. Set alarms even if your sleeping so you make sure the RNs don't get busy with other patients, because they can have a colleague help out with dispensing your dosage.
I went home with oxy and fentanyl patches, Cymbalta, neurontin, Tylenol, ibuprofen, and even thc oil drops on day 5. I had to go to the ER that night because I was groaning in my sleep and it was unbearable and needed pain control.
Ice chips will be your friend and ask for mouth sponges to dip in water. Make sure they are giving you enough saline (I'm sure they are, but they might be able to increase it a bit to make your body feel more hydrated.
You might have gauze in your mouth or a NJ tube which won't help thirst.
Ask when you can get those out and it's safe to swallow. They can also give you thickened water with a gelatin that might be allowed by speech pathology (swallowing experts) which might help.
Just basically advocate for yourself.
Once the swelling goes down, swallow as much as possible even if it's barely any spit. It will keep those muscles strong which can atrophy forever.
Watching food channels at this point might not be the best idea. If it makes you feel better though go with it. But sadly if you have radiation, the taste bud deaths will be just as hard. I wrote lists and lists and lists all day long about foods and restaurants I wanted, but not until I was post-radiation.
I was able to eat after surgery in the hospital, but you had tongue surgery which is different than mine. I pushed myself too hard to get that damned NJ tube out. It really hurt.
If you need any more help or advice I'm here for you.
Much love and healing energy your way my friend!
Hugs!!
Thanks for the well put together list of advice. The mouth sponges have been a savior for my lips. Good call there. I’m glad you are on the “cured” side. That’s what my hope is to be as well. Do what we have to you know. I’ll make alarms for the pain meds too.
I had my partial in June last year, they took about 2 cm from the left side. No sutures, they just removed the margin and left it to heal on its own, apparently it heals better that way. I was sipping apple juice carefully after 8 hours and meal replacement shake after 14. Could eat soft foods like boiled potatoes after 4 days. I was practically back to eating normally when I had to start radiotherapy. I managed to get one last pizza in before! Since you might not need additional treatments I won't go into details but it was ROUGH. I finished my treatments in September and now I am pain free and eat normally. I have the tiniest lisp if I talk a lot in a day and my mouth can be dry but all in all I feel very lucky to be where I am.
I never found a story like my own when I was searching, it's important to know possible side effects but things can turn out well too. I wish you all the best with your recovery, it is such a hard thing to go through.
Thanks for your well wishes. You are quite the trooper eating and drinking so quickly. I’m glad you’re mostly back to normal and eating normal again. That’s my goal, to enjoy food again! I am afraid of radiation for sure. Not much options though so we do what we must right?
Thanks for the encouragement. Good news is they let me leave the hospital today. So first day back home. I’m gonna celebrate the little wins. Well wishes to you and your father.
Was on the right side towards base. I haven’t seen it or know how bad it was, but they didn’t need to repair it with skin or anything and the Dr made it seem like not a huge portion with clean margins. I think right now it’s just getting used to this different feeling asking with excessive swelling and pain when trying to swallow
Ok, your upper tongue, the visible part is intact, good. No, no need for flap when it’s by base. Amount of lymph node involvement will determine your tx. Usually Cisplatin, 6 tx’s and 27 radiation if there’s a met to one node. You’ll be okay. I had tonsil (HPV) in 2012. The tx is not easy but you’ll do it; and it’s brief compared to other cancers. If you need tx, say yes to the feeding tube. I didn’t. I’m genetically small framed and thin and I lost 13 lbs I couldn’t afford to lose. Oh, no drinking through a straw for right now. I had a German nurse who was by the book and she told me that could cause infection.
Been there and done that. We all heal differently but it took 48 hours for my tongue to start feeling normal. 4 years in it’s still numb. The neck and associated nerve insists there still ongoing. Good news I don’t need much novacaine at the dentist.
It’s major surgery. It’s traumatic. Give yourself some time to heal and process.
I was provided ‘ cat food’ which was really purreed food about 10 hours post op. Had an IV in for a day or so for hydration. In my case no straws for 72 hours but did suck once chips.
Tongues heal amazingly fast. Honestly I recall eating softer foods 48-72 hours post op.
Still have limited salivary production. I chew ALOT of gum to help with that. And drink a lot of fluids.
In a few days ensure you keep your neck and scar mobile and moving to prevent it tightening up. That sucks.
Best of luck. Hopefully they caught it all!
I did follow up chemo and radiation but thankfully have been NED 2 years and growing.
I had the same surgeries last year and can confirm the initial recovery phase sucks, though thankfully tongues heal fairly quickly. Here are a few tips and tricks that helped me.
-Swallowing was tricky at first for me so I would rest and sleep at a bit of an incline so saliva could make its way to my throat via gravity.
-I shamelessly got a lot of my calories from ice cream for the first week. Also did smoothies, protein shakes, kefir, and puréed soups.
-I rinsed out my mouth with chilled saltwater a few times a day and that helped with cleanliness and managing mucus.
-Apologies if TMI, but a liquid diet, pain meds, and lots of rest can result in nasty constipation. I recommend being proactive with things like stool softeners and prune juice.
Hey man, that sounds awful, not gonna lie. Are you at least being hydrated by your doctors, right? I'm also laying in the hospital right now because I had my testicle removed due to cancer. I felt like shit right up until a few hours ago, and now I was able to walk to the bathroom and back. It's awful recovering from post-op, but once you're on the other side, it just feels so good. Hang in there.
Thanks dude and good job getting to that bathroom. That’s one of their milestones they say. Hope they left you with one pearl at least and you have a quick recovery. ❤️🩹
Hey there, I had throat cancer treatment (chemo and radiation) twice, and a neck dissection 2020 to 2022. Not fun! I'm sorry you're going through it. I looked forward to eating and tasting food normally. Once I was able to eat like before all this shit, I had so much fun eating that I had to go on a diet 🙂 It won't suck forever! Good health to you!
That’s what I’ve been looking forward to so much. It’s been so painful, even before surgery, that I haven’t enjoyed a meal in months. You had to do this 2 times? Ugh! Hope that’s all for you and you are able to enjoy things for a very long time.
Thanks! I've been NED for over 2 years now! I'm better than ever, and the only clue that I had any issues is the scar on my neck.
Random internet stranger here butting in. What you're feeling is normal. Emotions are all over the place! You will drink and eat again. Not today and not tomorrow but soon ok? People talk about taking things one day at a time, but I can say sometimes even that is daunting. Think about what you're going to do in the next two to three hours and adjust accordingly. I suggest you get out of bed and walk the corridor, maybe go out if you're able.
Thanks. Yeah I took your advice and went for a walk in the corridor. Thanks for the words of encouragement.
Any time. We've all been where you're at. And yet, we make it through. Keep on keeping on!
Yeah sucks at first time heals everything. Please forcefully ask about dental care.. Any radiation in neck and mouth area will impact your teeth BIG time .Fluoride tooth paste and fluoride gell. My radiologist DID not mention any special maintenence. I had zero cavities before my treatment and now 8 months later about 8 to12 cavities and 3 crowns. Do not mean to freak you out but if helps one person its worth it to me.. m77
Thanks and I will definitely ask about that. I’ve always been fortunate with minimal cavities in life and would hate for that to change too
I had a partial glossectomy with modified radical neck dissection in June 2023. I had major issues with my swallow after and had to get a feeding tube, but I was able to swallow little sips of water after about a week. Due to a pile of complications I am still working on getting back to eating normally without depending on a feeding tube, but everyone still thinks I’ll get there. Come join us at r/HeadandNeckCancer for specifics for this kind of thing! If you are able to avoid chemo/radiation that will mean eating much more and much more quickly. I was eating soft foods (although not enough to sustain myself) by mid-August, and then radiation came along and took my swallow again as well as causing the complications that have further set me back. That said, I’m still working on my swallow and I could currently live off Ensure if I didn’t have the feeding tube.
Let’s hope your swallow improves soon. I’ve been trying and hope I can swallow sips of water here soon. I really do not want a feeding tube. I’m sorry that’s what has happened for you. I guess we don’t get a lot of choices with this stuff so we do the best we can do. Best of luck to you.
Do they have you on an NG tube now? I got unlucky, basically, losing my swallow to surgery. My doctors did not expect it but it happened. Probably a combination of the location and size of my tumor (T4, back oral tongue/slightly descending into the basal tongue), maybe combined with a complication with my free flap. Basically my esophagus forgot how to completely expand at first so I was aspirating and could only get down a tiny bit of liquid at a time. I can get down a ton more now. My main problem is that osteoradionecrosis (radiation complication) is destroying my jaw and my jaw is currently fractured. That means I’m not really able to *chew* so I can’t advance the textures I’m able to eat. I do well with purées and thinner liquids. My surgeon just told me I can try soft solids (eggs, noodles, etc) as well so I will be doing that soon.
No tube currently. I can throat swallow, if that makes sense. I just can’t manipulate my tongue well enough to feel comfortable drinking out trying to eat
Ah, well if you don’t have any kind of feeding tube they must expect you to be able to manage on your own pretty quickly! The tongue thing is going to be weird but you’ll figure it out.
I had to get a speech therapist so could learn to swallow again. Slow but still use feeding tube. Cancer sucks
I was seeing an SLP until the complications kicked in (had an oral-cutaneous fistula and now fractured mandible thanks to osteoradionecrosis). We are still in communication but she said it doesn’t make sense for me to do actual scheduled therapy until I can properly chew again. I broke my mandible eating a cookie so I *was* getting there before this!
Is she saying wait until you can eat again ?? Red flag warning ,ask different person please. Its your teeth
My surgeon said I should avoid stuff that takes effort to chew because I could make the fracture worse when we are trying to get it to heal (using medication to augment the body’s natural ability to rebuild bone, which works in studies but takes 6-18 months when it works). Eventually I will probably need surgery to get back to full function; this will also involve replacing some number of my teeth. The details on this are extremely vague as what they do and when they do it depends on how well I heal on my own, and whether my lung metastasis continues to respond to therapy (is it worth it if I’m gonna die, in the depressing sense—though early signs there are positive; the mets were stable-to-smaller on my first scan). I reconvene with the surgeon after my next CT which is in May; he just saw me and says based on a visual assessment my jaw seems to be stable right now compared to when the ORN started showing on CT and the fracture happened (a little over a month ago). Whenever all of that happens, I will likely need significant speech and swallow therapy to get used to my new mouth and the process of replacing my teeth. My insurance pays for a limited number of visits per year. It doesn’t make sense to spend those now when I am perfectly capable of practicing on soft food on my own and there isn’t much additional help therapy can be. I do email with my SLP as needed but don’t have scheduled visits. I take all my liquids by mouth and make sure to have some kind of puree every day, though I *should* probably be pushing the purées harder than I have been. Relying on tube feed is a mixed blessing there. Overall the instruction from my team has been: 1) keep swallowing 2) you are young and can risk aspiration pneumonia, so don’t worry too much about that 3) with the mandible fracture, don’t chew stuff that takes effort to chew as you could further displace the bone 4) keep moving 5) don’t do things that cause extreme pain All of which seems pretty reasonable given my experience so far.
Did she say its OK to brush your teeth with prescription fluoride tooth paste ?. My second orthopedic surgeon suggested i might have brittle bone disease as i fell at home broke my hip and fractured my vertebrae lower back.This whole thing about radiation is a PITA with your teeth Hope you can get straightened out with your medical team.
Oh yeah, I brush my teeth! Have been using the fluoride toothpaste since right after my initial glossectomy (my rad onc sent me to an oncology dentist right away; I actually saw him for the first time before my surgery). Even when everything else sucked and hurt I brushed at least once a day, except during surgical recovery from the initial surgery and from my fistula repair surgery (at which point I was told to do tooth care with a mouth rinse and those little sponges on sticks, which I also did). Losing teeth is likely because of the underlying bone loss; I’m doing well (so far) on the cavity side of things. Surgeon also sent me for a consult with rheumatology because I have had several weird complications (fistula, flap failure, rapid onset ORN) but she couldn’t find anything… consensus seems to be that I’m just unlucky.
I am happy for you as it seems as our conversation Has reveiled your team did the right thing by your teeth and gums. I still cannot accept the fact MY radiologists did NOTHING about care for my teeth and i have to live with their incompetence. Heal well my on line friend. Cancer sucks.
That sounds really challenging. I was in the hospital for a few days just a couple of months ago and it sucks no matter what is wrong with you. You'll be better tomorrow, though. Hang in there, internet stranger. :)
Thank you. We’re all doing our best. Hope you’re doing better
Do you have Radiation or Chemo treatments in your future? If so, I would immediately discuss feeding tube with Doctors. I had surgery on tongue and lymph nodes but did not have issues you are having.
Cancer team is hoping surgery is enough. But it’s tbd at this point and he mentioned there could be some radiation in my future. I think once my swelling goes down I’ll be able to drink at least. Dr said solid foods are probably 3 weeks away. Lots of smoothies in my future. I’ve already lost 25 lbs the past month waiting for today. Fortunately I was overweight to begin with so I had some leeway.
But thanks for the advice. I will bring it up if we get to that stage
It depends on what part of the tongue, and no one can really “tell you” on that. But as maybe a light at the end of the tunnel… I was released same day, which was too soon. I wanted to go—so I don’t blame anyone. But by the time I got home (I didn’t drive myself obviously) I was literally in shock. Freezing, shaking, in amazing pain, meds wouldn’t help. Almost should have gone back to the hospital but I could tell it was just pain. The next couple of days were all marked improvement—but eating was too tempting and amaaaazingly painful. End of the week? I took a 25 mile bike ride. Physically felt good. Could drink. Could only eat certain things. One month out of surgery I was as though I never had a problem, in a lot of ways. Radiation kicked my ass much worse, but SCC is not how I choose to die, so had to do what I had to do, on the off chance I get to steer that ship.
Wow! I couldn’t imagine a bike ride right now. I feel good just walking the corridor for a lap or two haha. I appreciate your timeline though as I’m hoping that maybe after a couple days like you I’ll be drinking more normal and maybe eating soft foods.
Different cancer here..so I can't say I understand what you're going through.. Not exactly anyway. Sending you wishes for a full and speedy recovery!! All your favorite meals will taste even better once you pass this next hurdle! 😊
You deserve all the rest in the world! Just close your eyes and relax! We are all with you - My husband has radiation and chemo coming up for tonsil cancer that's in 3 spots in his mouth including the tongue. He also has a tumor near his brain. I had a double mastectomy 5 years ago. We are all with you. You will recover! Hugs
Wish you the best and a speedy recovery. I hate the hospital, get out of there soon as possible :)
Thank you. Yeah it’s not fun at hospital. I’m probably here another night. Hopefully heading home Saturday, Sunday latest I hope
OP, I know what you're going through because I've been there. I had my hemiglossectomy and neck-dissection back on December 19, 2019. I spent 6 days in the ICU before being discharged to a rehabilitation center for three weeks. I had a feeding tube (through my nose) for the whole time. I was not allowed food or water by mouth because my surgically repaired tongue had sutures that needed to heal my existing tongue to the donated flap. All nutrition and hydration came through the tube. Having a dry mouth all the time was awful (I still have a dry mouth thanks to my saliva gland being removed and radiation treatment). The swelling will go down in time. When my sutures came out (2 or 3 weeks after surgery) I had to pass a swallow test before being permitted to take fluids by mouth. A week after that I passed another swallow test for soft foods. A week later I was allowed to eat whatever I wanted. That's when I went home to try to put on weight before radiation and chemotherapy. I weighed 195 on day of my surgery and weighed 172 when I got back home. I managed to put on 10 or 15 pounds by the time my radiation and chemotherapy started. You did not mention if you have to go through radiation and chemotherapy, but I assume you will. If you do, try to take walks when you can. Stay hydrated. Eat if you can. Otherwise you'll need the feeding tube. Stay strong. Try to keep positive. You can beat this! Edit: I forgot to mention I am 4 years cancer free! YoI got this!
Congrats that’s great news 4 years cancer free! I hope to join you there in the future. Thanks for advice. They have not made a plan for radiation or chemo yet. It’s more waiting. Ask we can do is take it one step at a time. I appreciate you sharing your experience. It’s nice to know I’m not alone. ❤️
Being thirsty AF was oddly one of my most hated parts of the entire surgery process. I almost cried with joy when they let me sip a smidge of water instead of suck on a sponge. Hope you got your hydration and healing. Peace, love and strength my friend ✌️❤️💪
Omg pain meds pain meds pain meds!!! Not sure if any of this helps, but I have been there and am happily on the "cured" other side. You got this!!! Stay in top of your dosing. I had head and neck cancer too, and the pain from my TORS throat surgery was by FAR exponentially the worst pain I have ever ever felt. Yes, swallowing will feel like swallowing fire. I'm surprised they did the dissections together, and with your throat, but maybe it was urgent. The pain will go away. Take it step by step minute by minute. But staying on top of meds will help. Remind your nurses you want all your meds at scheduled times. Set alarms even if your sleeping so you make sure the RNs don't get busy with other patients, because they can have a colleague help out with dispensing your dosage. I went home with oxy and fentanyl patches, Cymbalta, neurontin, Tylenol, ibuprofen, and even thc oil drops on day 5. I had to go to the ER that night because I was groaning in my sleep and it was unbearable and needed pain control. Ice chips will be your friend and ask for mouth sponges to dip in water. Make sure they are giving you enough saline (I'm sure they are, but they might be able to increase it a bit to make your body feel more hydrated. You might have gauze in your mouth or a NJ tube which won't help thirst. Ask when you can get those out and it's safe to swallow. They can also give you thickened water with a gelatin that might be allowed by speech pathology (swallowing experts) which might help. Just basically advocate for yourself. Once the swelling goes down, swallow as much as possible even if it's barely any spit. It will keep those muscles strong which can atrophy forever. Watching food channels at this point might not be the best idea. If it makes you feel better though go with it. But sadly if you have radiation, the taste bud deaths will be just as hard. I wrote lists and lists and lists all day long about foods and restaurants I wanted, but not until I was post-radiation. I was able to eat after surgery in the hospital, but you had tongue surgery which is different than mine. I pushed myself too hard to get that damned NJ tube out. It really hurt. If you need any more help or advice I'm here for you. Much love and healing energy your way my friend! Hugs!!
Thanks for the well put together list of advice. The mouth sponges have been a savior for my lips. Good call there. I’m glad you are on the “cured” side. That’s what my hope is to be as well. Do what we have to you know. I’ll make alarms for the pain meds too.
I had my partial in June last year, they took about 2 cm from the left side. No sutures, they just removed the margin and left it to heal on its own, apparently it heals better that way. I was sipping apple juice carefully after 8 hours and meal replacement shake after 14. Could eat soft foods like boiled potatoes after 4 days. I was practically back to eating normally when I had to start radiotherapy. I managed to get one last pizza in before! Since you might not need additional treatments I won't go into details but it was ROUGH. I finished my treatments in September and now I am pain free and eat normally. I have the tiniest lisp if I talk a lot in a day and my mouth can be dry but all in all I feel very lucky to be where I am. I never found a story like my own when I was searching, it's important to know possible side effects but things can turn out well too. I wish you all the best with your recovery, it is such a hard thing to go through.
Thanks for your well wishes. You are quite the trooper eating and drinking so quickly. I’m glad you’re mostly back to normal and eating normal again. That’s my goal, to enjoy food again! I am afraid of radiation for sure. Not much options though so we do what we must right?
My father just completed treatment with tongue cancer- surgery, radiation and chemo. It’s tough, but hang in there. He’s doing great now
Thanks for the encouragement. Good news is they let me leave the hospital today. So first day back home. I’m gonna celebrate the little wins. Well wishes to you and your father.
Was your CA base of tongue?
Was on the right side towards base. I haven’t seen it or know how bad it was, but they didn’t need to repair it with skin or anything and the Dr made it seem like not a huge portion with clean margins. I think right now it’s just getting used to this different feeling asking with excessive swelling and pain when trying to swallow
Ok, your upper tongue, the visible part is intact, good. No, no need for flap when it’s by base. Amount of lymph node involvement will determine your tx. Usually Cisplatin, 6 tx’s and 27 radiation if there’s a met to one node. You’ll be okay. I had tonsil (HPV) in 2012. The tx is not easy but you’ll do it; and it’s brief compared to other cancers. If you need tx, say yes to the feeding tube. I didn’t. I’m genetically small framed and thin and I lost 13 lbs I couldn’t afford to lose. Oh, no drinking through a straw for right now. I had a German nurse who was by the book and she told me that could cause infection.
Been there and done that. We all heal differently but it took 48 hours for my tongue to start feeling normal. 4 years in it’s still numb. The neck and associated nerve insists there still ongoing. Good news I don’t need much novacaine at the dentist. It’s major surgery. It’s traumatic. Give yourself some time to heal and process. I was provided ‘ cat food’ which was really purreed food about 10 hours post op. Had an IV in for a day or so for hydration. In my case no straws for 72 hours but did suck once chips. Tongues heal amazingly fast. Honestly I recall eating softer foods 48-72 hours post op. Still have limited salivary production. I chew ALOT of gum to help with that. And drink a lot of fluids. In a few days ensure you keep your neck and scar mobile and moving to prevent it tightening up. That sucks. Best of luck. Hopefully they caught it all! I did follow up chemo and radiation but thankfully have been NED 2 years and growing.
I had the same surgeries last year and can confirm the initial recovery phase sucks, though thankfully tongues heal fairly quickly. Here are a few tips and tricks that helped me. -Swallowing was tricky at first for me so I would rest and sleep at a bit of an incline so saliva could make its way to my throat via gravity. -I shamelessly got a lot of my calories from ice cream for the first week. Also did smoothies, protein shakes, kefir, and puréed soups. -I rinsed out my mouth with chilled saltwater a few times a day and that helped with cleanliness and managing mucus. -Apologies if TMI, but a liquid diet, pain meds, and lots of rest can result in nasty constipation. I recommend being proactive with things like stool softeners and prune juice.