Hi everyone don't no iff this is correct one to post on but I'm just looking for bit of help and support my dad has undergone a total gossectomy and is only on day five x his trac been took out and he has had a new tongue reconstructed with tummy muscle x he's been having a bad time with saliva and secretions coughing them up x I think he is producing a lot of saliva does anyone no the reasons why and how long secretions will last x we are all struggling to come to terms with my dad loosing his tongue he will always be forgot fed and just wondering if anyone else has experienced this and if you can still communicate and eat small amounts xx

Always be peg fed that ment to say x

Hi... firstly there are people who've had total glossectomies who are able to eat via their mouth. It will take time and likely some training. Secondly the secretions are very normal. It's the body's way of dealing with the trauma of the surgery. He will take a while to heal, likely about 6 weeks then he will have to try and relearn how to eat and speak. There are a few members here who've had glossectomies or are family members of those who've had them. They will be along to try and answer some more questions. But for now it is very likely that he will be able to talk and eat again to what degree no one knows, maybe just soft foods maybe everything. His speech will probably be a little hard to understand but it should improve. It will just take time and therapy. Hugs and welcome.

Welcome to OCF! Im glad you have found our site to help you with your father.

Ask the medical staff to use a portable suction machine to suction out all the gunk.

Its still too early to tell if he will require tube feeding for life or if he will be able to relearn how to eat. If you dont already have a dietician and speech pathologist on board find them and get their help. They will be able to do wonders in help0ing him learn to adapt.



PS....I have moved your posts to the proper location. Please take a few minutes to review the link included in the private message I sent you. Click on the tiny flashing envelope next to the My Stuff tab.

Hello Delly, welcome. This is indeed the correct forum and a wonderful site for information and support.
My Husband Kris had his Total Glossectomy 3 years ago. He too had flap formation from his stomach muscle/skin. I remember that he too had plenty of oral secretions post op. actually he went from having a totally dry mouth after his radiation treatments, to this very wet mouth after the surgery. While he was in the hospital and the surgical site was healing we used an oral sucker to remove the secretions.
Kris rinsed his mouth out frequently with a soda bic and salt solution. These days he just uses fizzy soda water, sometimes coke. He rinses and then spits/ let's it all run out. Many times, he needs to physically wipe it all out. As they no longer have a moveable to tongue to wipe and clean out the oral cavity, sometimes it needs wiping.
Kris started swallowing liquids at about the 3 rd week post op. he progressed very quickly and has not used his Mickey Peg since about the 8 week mark. Kris tips the fluid into his mouth, tips his head back and somehow swallows. Even the Speech Therapist can't explain how he does this. So , now, Kris swallows all his nutrition. Though it is liquid. Smoothies , soups, blenderised meals etc.
Of course he will be able to communicate. Try holding your tongue still and talking. You can do it. Yes, it sounds a bit different, but it is still easily understood. Kris had a total Laryngectomy as well and he is able to communicate.
So, be positive. You are only at the very early stage and it certainly does get better. Kris leads a full life and we are grateful to still have him.
If there are any questions, or any help I can give you, please just ask me.
Tammy

Orr thankyou so much I feel so much more positive after reading this :)) I am praying my dad can do this and I want to support him every step of the way x Tammy your husband sounds like he's doing great :)) x I've been to see my dad tonight he's very swollen around the jaw not as many secretions today x he says he thinks he's depressed but I don't think he is yet he's just fed up and bored and he wants to get home xx we have done all his house up as it was the same as when we was kids ha he's going to love it I've got him broadband and netflicks I just want him to be happy and occupied and get better xx I no it's a long road I just don't want him to give up to see my dad last week talking to this breaks my heart inside I would loose every single limb to take his place but I can't so all I can do is be strong x thankyou everyone for welcoming me x and thankyou critstine for moving my tab I've been trying for days to contact someone to speak to x

It's completely normal for him to get a bit down. This is very life changing. I'm sure Kris would have had difficulties if we, his family , hadn't been so positive and supportive. There is also the option to start antidepressants . Kris started these in the 2 week post op. they take 3 weeks to kick in, so start now. Kris was only on this medication for 3 months and has never looked back. He leads a full life and I'm sure your Dad will too with all your support and encouragement.
I will say though, , that recovery takes a while. Don't expect him to be back to himself for some months. It took Kris a good 7 months. However I was able to relate him safely home by himself at around the 8 week mark. He could do all things independently by then.
Thinking of you,
Tammy

Hi tammy I've been trying to say that to him and keep him positive x I sent him your reply yesterday to spur him on and he said thanks just knowing that others are going and been through the same will help him along xx he's very swollen around his jaw and because he had his lymph nodes took it hard to drain the fluid x he's not in much pain but I'm dreading the radiation x he's had it before 22 years ago he had lymphoma in his neck but he a lot older now and had been through a lot more x how sad to even have cancer once never mind twice x had to tell him his cat passed away today it was 19 and don't think it could cope without him :(( sad as that's all he had he doesn't have a wife or partner but said he doesn't want another animal xx

It's a big change and hard to adjust, but he will - he may have to figure out what works for him with the help of a therapist who deals will swallowing and speech etc... I think his determination will make a difference. For now, I totally understand his being down - but hopefully he will pull out of it being at home and healing. Maybe you need to sit and talk to the surgeon. He would have a good perspective on how well his patients do after the surgery. Maybe there is a support group available so he can see that he will get better.

Hugs.

Thankyou Cheryl it's more me questioning everything he seems to be just taking if day by day ha I just don't want him to get to down and depressed I no it's going to happen but I don't want it to get that bad where I can't pull him out of it xx I no it will cone with radiation cos all this will be healing then he has to start that x but had some good news today they are sure they've got all the cancer :)) xx

Hi Delly, I hope Dad is going ok. He will be quite swollen for some time. Initially from the surgery and then probably from Lymphoedema due to the neck dissection and removal of the lymph nodes. This lymphoedema takes years to subside. Kris's has improved heaps but he still has a small wattle under his chin.
Just keep being there for Dad. Just knowing you are loved is so therapeutic.
Maybe once Dad has recovered he will reconsider getting another pet. We recently got another dog, he responds Beautifully to Kris and his hand signals.
Dad needs time.
Tammy

Is anybody there :(( dont really no who I can talk to my dad is struggling feels his new tongue is to big and also his teeth don't join so feels it's not right x we don't think he can swallow as all his saliva is just sitting in his mouth so the doctors think he can't swallow ? Can this be learned x there's no speech at all only noise and he doesn't open his mouth or breathe through it only his nose but now I'm worried if he gets a cold then what ? So many questions and nobody to ask :(( x

Hi Delly,
It's really early days for your Dad. Kris needed to use a suction machine for the first 3 weeks or so. In the 4th week post surgery he had a barium test to make sure the surgical site was all healed with no leaks. Then he was allowed to start trying to swallow. He started with just a 10 ml syringe of water. He squirted this into his mouth, tipped his head back and swallowed. A Speech Therapist will help him with this. It does require lots of practice and won't happen overnight.
I also think it's too early for clear speech. He will still be very swollen inside with lots of secretions which make it near impossible to speak. Be patient. There really is no reason why he can't speak as he still has his voice box. Just let the swelling subside first.
This is all so new and recent. Dad needs time for all the oedema to resolve. The tongue flap too will be swollen at this time. Kris had hairs on his initially, but that too resolved. Reassure your Dad that all these things will get better with time. Once the swelling goes down , the secretions too will lessen. Kris needs to wash the goo out of his mouth often using fizzy drinks/soda. Other times he physically wipes it out with a tissue. Dad will get used to this and it will get better.
Tammy

Delly, everything you mentioned should be thoroughly discussed with your fathers physician. Your father very recently had his surgery. Every patient is different and will react to things in their own way. What you have described is completely normal. It takes time to recover from such an invasive surgery. If you can talk over your concerns with his doctor Im sure they would be able to explain in greater and more specific detail how your father is doing and have a better idea of the end result after he heals.

As a caregiver its so difficult to watch someone you love struggle. I think OC patients really have it rough being OC treatments affect such critical parts of daily living. Being in the patients shoes I know how hard it is to bounce back. Try staying positive and showing a brave face in front of your dad. Im sure he is upset and very scared as well. Hang in there! In time things will get much better.

Didn't see this post tammy thankyou for reply it just gives me a bit of reassurance just because we don't no what to expect x I've been tonight and he is fed up
He wants to come home but has an infection where his Trac was x he's on antibiotics for it now x he came home for 6 hours yesterday Znd was made up with his house we had decorated it all and got new carpets and setee :)) he did a little dance in the kitchen made me smile from ear to ear xx thankyou all for taking the time to read my posts and reply it means a lot x I have mentioned an animal and I think in another few months he will x I think a dog would be great company as he lives alone x he wrote tonight this tongue just sits at the bottom of his mouth and doesn't even move x but I don't think it aids in much think it was to just fill the gap xx

I love the fact that you've decorated the house and that he did a little dance. You'll all be looking forward to him going home and really enjoying it. Best wishes!!!!

Hi Delly, you are correct. The tongue flap is just to fill the space. It is sewn into the floor of the mouth. It is not connected to anything else. So, it doesn't move and it doesn't taste. The good news is that we have taste"buds" all over our mouths and the roof of the mouth. Kris is still able to taste, although it is not very strong. But he does taste.
I think your Dad is doing great. He will soon be home. How fantastic are you guys to brighten up his home.
Tammy.

Hi everyone just got back from hospital dad hoping to be home tomorro he has his nebuliser ready and just waiting for suction pump x we had a laugh tonight I enjoy going up when we have a laugh x I can tell what his noises mean sometimes as well x I said get on that nebuliser dad and get it all up x he hummed I am going to later ! And I answered and it was like we had a conversation :)) xxx his chest bit better today swelling going down well just one side bit more swollen where the plate in his jaw is x he does all his meds feeds himself and quite independent which is good for when he comes home x he wrote he hopes he has a brew one day I really hope he can x and also wrote in 12 month when I better I hope to go back to work x he was a taxi driver so I'm hoping he can learn to say where are you going clear enough x fingers and toes crossed xx hope your all ok I feel like I've been a bit selfish just asking about my dad and your all taking the time to answer me x thankyou x

Glad to hear your father has been doing a little better. It take time to bounce back from what he has been thru.

When he goes home make sure his intake is high enough so he doesnt lose weight. Every single day shoot for at least 2500 calories and 48-64 oz of water (remember formula is mostly water). Also pick up some high protein whey powder to help speed his healing.

Best wishes with his continued recovery.

We are always here to help, dont hesitate to post. An educated patient and caregiver make the advocates.


PS... Please take some time to review the link I sent with info on how to make a signature. It really is important so we can help you better. Thank you

Hi Christine think I've done it 😁 x I'll update it as he goes through radiation , he's coming home tomorro or Friday depends what day pump turns up but he's defiantly ready to come home , I'm bit worried about him coming home but hes healing really well and using his nebuliser more to clear his chest , face looking good amazing to say he had 14 hour surgery 2 week ago , just feels his chest is tight but his trach hole closing so there's not as much air going up and he also only breathes through his nose he doesn't open his mouth says it's all big and feels there's to much in there but it's going to be very swollen inside and probably feels foreign to him , they've told dad he can't put anything else in his tube but I am keen to give him more calories as he says he loosing weight even though he having 6 drinks 400 cals each a day , is the whey protein a liquid that is high in calories xx

And how amazing you are Christine giving support to others even though you have been through so much yourself x I'm hoping you can all meet my dad on here very soon I'm going to put it on his iPad and see if he joins ha I think it will help him a lot thankyou ladies xx

The signature looks great, Delly! Thank you

Using other things besides the recommended formulas can clog the tube or cause it to wear out quickly, plus its very difficult to monitor a balanced diet and calories. If your father is losing weight when taking in 2400 calories, than means he isnt getting enough. In my opinion I would try to get him to take in at least 3000 calories daily to see if that will stop the weight loss. Everyone is slightly different and will respond to everything in their own way. The high protein whey powder isnt for calories, its for the extra protein to help with healing. It can be found in any pharmacy or most grocery stores, even Walmart has it, usually its near the ensure or vitamins. I would suggest talking everything I mentioned over with a nutritionist and/or his doc.

Also ask the doctor if a visiting nurse would be something the hospital offers. This would be a huge help! I had one for several weeks and they were a lifesaver to me. When he comes home you will find that there so an enormous amount of work that goes into his care. Just daily living items can quickly wear a patient out when they have had a major surgery.

Good luck with everything!


PS... You're welcome! Im always here to help

Hi all dad home hooray :))) x just one question tonight they have sent him with no sterile water and said used boiled water this is proving to be a pain in the bum x what should we store it in and is it ok to use bottled water ? It's to flush his tube and obviously for fluids xx

Is this for his PEG tube? We just use ordinary tap water. You don't drink sterile water, so tap water is fine.
Happy to hear he is home.
Tammy

He's using tap water now boiling it all is impossible as he uses lots x he's all swollen today again and very tired don't no if he done to much think the swelling due to being lay down most if the day where as in hospital he sat in a chair so the fluid drains out more x feel very helpless left him to have a sleep now :(( xx

We used spring water that we got from the supermarket just because John's resistance was low and would have got sick if something's in the tap water. If tap water is fine in your area, it would probably be fine.

Try to have him sleep propped up on at least 2 pillows. This is very important if doing feedings by using the pump. By laying down flat he could aspirate which can lead to serious problems. I used to raise the head of my bed about 6" plus sleep on 4 pillows to avoid laying flat. This will also be a big help with the drainage.

I used bottled water. Any grocery store will sell the purified water which is fine to use and so much easier than boiling water all the time.

Was a visiting nurse something that was available?

Yeah tap water is fine to drink here I in england Manchester xx dad not good today so tired 😔 xxx

Hi Delly
So sorry to hear about your dad ...... I live not to far away from Manchester . I had tonsil cancer so not the same but if I can offer any help , support just let me know.
Was your dad treated at The Christie with surgery at Wythenshaw ? I had my op at Stepping Hill then chemo and radiotherapy at The Christie under the care of Dr Sykes . Been going to a head and neck support group at Maccelsfied hospital think it's every 6 weeks , it's for carers too . Some people have been through the same procedure as your dad.
I finished treatment December 2013 and I'm doing good most of the time . Got a little worry at the moment but having it removed and a biopsy on Monday at wythenshaw under Mister Iqbar team ..... Nobody appears to freaked out apart from me , but as the mantra says on here " it's not cancer until the biopsy says it is" so that's what I'm saying to myself!
You are doing a great job looking after your dad , my partner did the same for me and still does he's very protective keeps me grounded . It's vital when facing this horrible unfair disease .
Stay strong thinking of you , don't be alone, ask questions , and remember I'm not to far from you. I haven't the knowledge that other people on here have unfortunately but can offer my support and a hug ! Xxx😄😄

Hi hun so sorry for what you've been through life can be so creul I'm glad you've got a supportive partner I wish my dad had someone living with him for the times you get scared xx yeah dad going there Tuesday should start radiation in 4 week he's had radiation on that area before so going to have to try find his notes from 28 years ago to see exactly where he had it xx are you able to eat or are you peg fed x dad is very down at the moment he feels very tired but I think that's because he more relaxed at home x I would love to go a support group and meet people and see how every body copes with things because I find it hard and if my dads having a bad day I am to xx I hope your results are good think you've been through enough now ! Xx

Hi Christine sorry didn't see reply he said he has to lie at a certain angle cos he starts coughing x I think he needs to be more upright x there I nurse that comes and changed his dressing on trach hole which as not yet healed which is a worry x he said he can't breathe through mouth everything still swollen inside x

Hi, Delly
Just wanted to wish you the best with caring for your dad. Please remember to take advantage of any help that is offered or available. You are a fabulous daughter - but you are human and it won't help if you wear yourself completely out helping your dad. I ended up with a really bab RA flare after my husband's treatment - don't be like me :-)
Maria

Thankyou Maria I just want my dad to be ok x I no he's going to get depressed and I'm ready I just want to try help him back out of it x it's hard with my dad because he never had no hobbies or social life he just went to work came home drank brews ha and went back next day he really misses work and he wants to go back he's given himself a year ! I really really pray he gets enough speech to go back to taxi driving and I really hope he can drink a brew again :(( only time will tell xx it is very hard you think every second of the day about it and how you can make the healing time easier but it's so hard I asked if he wanted to go for a drive today but he doesn't so I can't force him just hope he keeps feeding himself and trying to help himself xx there doesn't seem to be much help yet I:/ in going to contact people Monday and see what I can do xxx

That's tough, Delly - taxi driving is a very social profession, and I bet he does miss the interaction. How is he communicating now?
Maria

He writes everything down and hums a few noises x I don't no how well he may eventually speak I'm hoping he has enough speech to go back to work as that's what he wants to do more than anything xx it's a creul creul life feel so bad for him but there nothing I can do except go visit every day and get him anything he needs xx

Hopefully he is doing better daily. IT takes time but small improvements move you towards where you want to be.

hugs

Delly, as parent I can tell you that seeing a loving child everyday means the world. I know you would like to be able to do more - but please know that seeing you does mean a lot to him. Thinking of you both on my side of the pond.
Maria

Hi Delly,
I can totally relate to everything you are saying because I too was a scared daughter - i worried about whether my father could talk again, eat again, and be himself again. It is totally okay to be scared! It WILL get better - for you and him. Overtime, you will learn to accept it! This site is a great site - i read everything everyone said to my dad every single day - i kept reminding him that there are so many people going through this and they are okay, they are doing great and they are still fighting! Remember to be positive and keep cheering him on ( even if you dont feel so positive )
My father had an excellent speech therapist that helped him chew mild stuff like mashed bananas, half boiled eggs, and milkshakes post op. Within a few months, he was eating porridge, steamed fish, and thick avocado juices. I would recommend u to get a speech therapist ASAP.
I'm praying for you and a speedy recovery for your dad.

Hi everyone x dad is feeling a bit better his weight dropping a bit because he wasn't feeding enough they have now changed it to a higher calorie intake hopefully he will gain some weight before his radiation x my dad has had a massive improvement In the last few days he has actually swallowed a teaspoon of water quite a few times it doesn't sound much but it is a massive achievement as we wasn't sure if he could swallow again xx his face is healing nicely just needs to start opening his mouth a bit has no speech as he keeps his mouth closed because he says it's all to big thinks his tongue is to big I'm not sure if it is or if it's due to the swelling xx it's only 3 week post op and in my eyes he's doing amazing I've got him broadband netflicks and an iPad x just want him to try not to get to fed up staying in xx radiation starts 14 April and I no we going to have a few months of bring down and not feeling like it's going to end x my dads had radiation before on the same side so they have to try and not hit the same bits else it will cause a lot of damage so he's had a mask made to try protect these areas x he's doing amazing and I'm so proud xx Maria I fully understand this feeling I have 3 lovely children all girls and very understanding she 13,10amd 4 😀 and thankyou for your kind words xx kjb im do sorry to hear your dad passed away and after everything he went through how sad x dads not heard off the speech therapy yet I think everything waiting till after radiation when everything's calmed down x bet your dad was so very proud to have you as a daughter xx

Netflix and an iPad. Both are very medicinal. They've helped me get through the slow times.

Glad your father is recovering well from surgery. I well understand how a sip of water is significant. It's something we take for granted until we lose it.

You are giving your father great support which will make the next few months much more bearable.

Best wishes!

You're doing a great job Delly, and so is your Dad.

A tablet (not the swallowing kind) is a great way to pass the time when you're stuck in bed.

Thankyou everyone x he makes me proud every day achieving new things had a sip of cup of tea today and throws it back and swallows I'm hoping the radiation doesn't damage anything where he can't swallow afterwards because I feel he can do that and is determined to get back to work x I really hope so xx

Hi Delly
Sorry missed your posts. I only had the NG tube for 9 weeks , eating and drinking normally now ... Well the new normal! Bottle of water to help swallow , and getting on with the altered taste or lack of it! Some foods easier than others and some still sting like crazy !
Your dad seems to doing well , great stuff with the sip of tea we love our brews us English folk! Lol
My tongues been pretty sore since the little op on Monday just the waiting now get the results a week on Friday .
The next support group is on Tuesday 7 th April at Macclesfield hospital 6.30 / 8.00 in the cancer resource centre. Maybe early days for your dad but carers are always welcome. We meet every 6 weeks so whenever anyone feels up to it all welcome.
They're fab at Christies will really look after him , sorry your having to go through this , we're all here for you both
Di x😄

Hi di66 glad to here you are feeling better and yes we do love our brews I'm hoping one day he can have one with us x glad your able to eat as well bet it feels strange x I don't think dad will be able to swallow food if I'm honest x how was your radiation how many blasts did you have dad goes every day but not say sun for 6 week 30 blasts x how did you cope did you have a very dry mouth is this why you swallow water with your food will it be always like that xx

Hi Delly ,
I had 30 fractions of rads and 2 scheduled chemos but only managed 1, my platelets hadn't recovered enough for the 2nd lot . The radiotherapy is stuff and I did struggle but not to do isn't an option so it was a case of just getting on with it. My neck became very sore I trialled a cream but I can think for the life of me what the hell it's called but it will come back to me! Was told is �85 for a very small tube but they gave me several tubes whenever I asked. My skin still broke down and was very wet and oozing sore but it's healed beautifully and you would never know . Your dad will be very tired I'm still tired and can't manage full time work anymore , yes I too went daily for 6 weeks with sat/sun off. Are you able to go with your dad , I couldn't have done it alone and I couldn't drive. I had radiation sickness but believe this is not that common most people don't. The dry mouth is miserable I'm on a drug called pilocarpine which I find really good wouldn't be without it but again most people can't tolerate the side effects I personally find them worth it . Nobody at christies told me about it , I learnt on here so asked about it and they gave it no problem , so worth a go. They also gave me acupuncture which I had for 3 months after the treatment I wasn't well enough during.
Horrible wet miserable day here roll on summer eh?
Take care ask away if there's anthing I can do or help with xxxx

Tough not stuff!

Have you recovered fully from radiation and how long after treatment finished did you start to feel better xx dad just wants it all done then we can start in speech therapy and swallowing hopefully x

Hi di66 I'm very interested in the support group next Tuesday x I'm not sure my dad will come yet but I think I want to attend , are there people there with similar to my dad who can't talk , are they all at different stages , dad having very down day today which also makes me down it seems to be however he is feeling I do to xx

Hi Delly , people there have a variety of head and neck cancers , all at different stages in their recovery they're a great bunch , I'm the youngest was 47 at diagnosis some have been meeting up for 14 years I think. It's ran by 2 women ones a dietician the other a speech therapist and they have loads of advice. Guest speakers come head and neck specialist nurses , dentist , benefit advisors this next one is a speaker from Wiltshire farm foods ... Could be crap but hopefully not! Lol
I understand about how your dad feeling dictates your mood and feelings , it's like that for my mike , if I'm managing being positive and looking forward he is to , if I'm having a bad day he tends to also but we try very hard to bring the other round if it's a down day.
The long term effects of radiotherapy I'm still dealing with but the short term ones I would say I started to really begin my recovery after about 6 months so for most of us there aren't any quick fixes but everyone is different a few have sailed through it.
If you fancy a chat private message me and I will send you my phone number.
Your doing a great job xxxx

Hi Delly
Was just wondering how you and your dad are doing ?
Thinking of you both x

Hi sorry not been on had a really busy week x been for dads follow up appointment not very good news he's been drinking bits of water but they told him not to as it's dangerous as it's probably going in his lungs they won't give him a swallow assessment till about 3 more months but he said there's not much hope of him swallowing again :(( the surgeon said its very unlikely as he's had full tongue removed :(( xx dad also struggling with the saliva in his mouth there's so much of it that if he opens his mouth it falls out so he still doesn't talk x they said that will get better when radiation starts on Tuesday , we've had no support off anyone the McMillan nurse has never been dads once I go round every day and sometimes it's only me he sees , dreading the radiation as they said his face will swell even more it's going to be a long six weeks ,then also afterwards for another 6 good note though he's put bit of weight on as he's upped his peg feeds needs to gain 2 stone really as he's lost 4 having bit of trouble with it repeating on him and coming up his throat but he's stopped taking his ant acid meds because he read the side effects ;/ but he will have to start taking them again x feels his throat dry and he needs a drink but doc says it's in his head. But he does need to drink but isn't allowed x I really hope one day he will swallow I'm praying for a miracle x also said the new tongue will shrink slightly when they start radiation as he feels it's to big x so much going on at moment just want ta year to pass by so he can get a bit of life back feel so sorry for him I dream about it and every time I eat I feel guilty I don't even like having a drink at his house :(( xx hope everyone doing ok xxx

I am very sorry to hear that your Dad is having a rough time. What a good daughter. I am new in all this myself. I will pray for your Dad and hope it gets better. Denise

Hi Denise welcome so sorry you've had to join here x If there's anything I can help you with just ask I will help as best I can x when will you have your results xx

Hi Delly. That sounds really awful that they said he might not swallow again. I'd adopt a wait and see approach. People who've had glossectomies tend to be able to swallow over time and with help from speech language therapists. I can imagine how dry his throat and mouth must feel. I felt like that for the first few days after surgery. It was hot, the air conditioning was inadequate and I wasn't allowed to drink. What helped me was when they put more fluid (water) in my food supplement. I can honestly say the thirst and dry mouth went away. When I could finally have some water it was an anti-climax. So maybe he needs more fluid.

I believe you need a lot more support. When he has radiation he'll need it, so push that nursing service to provide him with visits. I live alone and had weekly visits from the Cancer Society nurse until about a week after rads ended.

Please don't feel guilty about eating and drinking. Be as positive as you can with him. Take it one step at a time.

Best wishes.

Orr your journey sounds horrendous :(( I'm glad you've come out of the other side and I no dad will to it's just going to take time , I'm praying he will swallow again x I asked the doctor how does he no this as no swallow test as been done he answered because I did the surgery he said he can't say for sure because everyone is different but with this type of surgery dads had the only thing that will improve is his speech xx during radiation they said his Salivia will dry up with defiantly needs to happen as his mouth is full and he can't open it else it pours out x but does the saliva come back then after few months ? Because if it does I don't no what can be do we about it ? Xx

That sounds most unfortunate. Whether the saliva comes back or not depends on the salivary glands. If they get zapped you have a dry mouth for life. In my case my major salivary glands seem to have been avoided because I have a certain amount of saliva. It's much less than normal though.

I just hope your father gets lots of improvement. It's very early days.

As for me, I've come back from four cancer diagnoses for two different cancers over the last 20 years but I've kind of made peace with it. I'm just glad to be alive right now to see my grandchildren and participate in this crazy world.

Orr I'm glad you have to it's a horrible horrible disease but to have it that many times is awful x dads had it twice 22 years ago non hodgkinson lymphoma in his neck same side as his tongue was he's only got one salivary gland but I think it's because everything is healing so producing more Salivia x his radiation starts tomorro he's had a mask made to try to protect the areas he's already had radiation on all them years ago x he's dreDing it as he struggles to lie flat for long due to coughing and only breathing out his nose x fingers crossed it goes ok not sure how long it takes they put his head in the mask and clip it to the table :(( just hope he can cope with it x I'll keep you updated do you no how long before radiation starts to take effect is it a week or few weeks xx

Hi Delly, I am a bit puzzled as to why the surgeon says your Dad will never swallow. Kris too has had his entire tongue removed. He has been swallowing since he was 3 weeks postoperative. Our Speech Therapist says she can't understand how people like Kris swallow , but they do. There are others on this site who have also had Total Glossectomies and they too swallow. If I was you I would keep asking. Ask why he can't swallow? You don't need a tongue to swallow, though it does make it easier. Ask why he needs to wait 3 months for a swallow study.
Radiation can be rough. Dad is lucky you are there for him. Keep posting here, there are many who will help you both through this next stage.
Tammy

Thanks tammy I have read numerous stories that they can swallow but he said it's very unlikely and I said how do you no he said because I did the operation and his whole tongue was took x he just said it's very unlikely and said he won't try until after the radiation and everything has settled x they said it's dangerous that my dads been drinking because it will be going into his lungs and give him a chest infection x my dad has been drinking water for 2 weeks with no problems but if there telling us that we will have to stop xx he starts radiation tomorro xx

My husband couldn't swallow for two and a half years but that's from a different cause. What I want to say is if you father would like to have the feeling of something interesting his mouth, he can always rinse his mouth with whatever, like coffee, tea, etc and then spit it out. We, too, were warned about aspiration pneumonia which is when the liquid gets into the lungs. Keep an eye on his temperature if you are worried. Is there any chance of your getting hooked up with a speech and language pathologist about the swallowing?

He doesn't see a speech therapist till after radiation now and everything settles down then they will give him speech therapy x to be honest we've only seen his surgeon once since he left hospital and a district nurse twice I thought there would be more support dietician been once changed his feeds as he was loosing weight then said see you in a month x

He will get a lot more support when he has radiotherapy. There will be a range of medical professionals there and he'll see people every week day.

The mask. Some people look at them as if they're a prop from a horror film but really it's just an essential device to hold your head still and make the rays accurate. The procedure lasts 10 to 15 minutes. It's uncomfortable if you have to have a tongue depressor but otherwise the mask itself doesn't hurt. I used to go through a list of things I'd memorised to cope with the way the tongue depressor made my jaw ache.

What made radiotherapy tolerable for me was the friendliness and concern of the staff. I almost missed them when I finished.

I hope so I hope he doesn't encounter to many problems and doesn't shut off x just got to keep doing what I doing and pull him through long few month now fingers crossed xx

Delly, Kris had his entire tongue removed and part of his Pharynx. The surgeons told us that they built a downwards sloping shelf where the base of the tongue used to be. So that fluids would just go down the slope.
I just want to reassure you that if your Dad has been swallowing water and he is NOT coughing then he isn't aspirating. If fluids ( or food ) get into the lungs we cough . Our lungs are very good at coughing out what shouldn't be there.
I hope your Dad will be seeing a whole team while he undergoes radiotherapy. This should include the Speech therapists. Let them guide you on the swallowing
I would push very very hard to see a Speech therapist during radiotherapy. Make a nuisance of yourself if you have to. I think it is most important that Dad does start swallowing as soon as possible.
I was labelled as the wife from hell after Kris's surgery. But, I was fighting for my man and I wanted the best outcome for him. The whole team eventually apologised to me as I was proven right on a few important matters.
You are a wonderful Daughter.
Tammy

Hi tammy no he doesn't cough at first he was kind of throwing it back tipping it back and then after 2 weeks was just swallowing all his neck moves like ours as I've watched it xx I'm worried now because he doesn't actually see anyone other than radio therapy man x my dad says he knows he can swallow and like I said he's not coughed once and as the week went on it got easier x do you think I should ring up someone and ask for swallow assessment again ? Cos it will be a long time now until everything has healed from radiation xx

Please don't let one person's opinion color your dad's hope. Humans are very adaptive. I know the surgeon did the surgery and he may have an educated opinion but it's not finite.

He should have a suction machine to get rid of some of the saliva. Sadly it gets worse during the latter days of rads too. I used to spit constantly. Then after that it completely dries up. And may return a few months to years later. The body does heal. Tell him there is hope and a new normal on the other side... Getting through the worst of it of course is the goal.

Hugs.

Hi Delly , sorry to hear about your dad , it's very hard to watch somebody close to you struggling . I'm surprised and annoyed for you about the lack of support you have both received . This wasn't the case for me , I feel that I had a lot of support and input from the specialist nurses , Macmillan nurses and district nurses , but Mike wax straight on that phone advocating for me when I wasn't well and demanding answers to our questions .
I can't really help with the swallowing questions as I don't know , but others I see have and will continue to help and advise you.
Your a good daughter I'm glad your dad has your love and support .
X

Hi everyone he does have suction machine he rather spits it out in his way I'm hoping it does dry up so he's able to start taking as he does have quite good speech which is a major positive but he never opens his mouth at the moment even when he suctions it tends to come back straight away x di66 I'm hoping a lot more care with his radiation is coming because so far it's horrendous x my dad upped his feeds again today 3300 calories today ha he's determined to get back to 15 stone I'm hoping he can as he looks very frail at the moment only 12 stone x he's been outside today peeling his taxi driving stickers off his car which is brilliant because he's abit conscious of his face so I was proud if that :)) he seems very determined at the moment and I'm very shocked how well he's doing x I wish he didn't have to go through this radiation as it's going to put him back xx thankyou everyone for taking the time to answer me hope your all well xx

Oh and got a call as ready to set off for radiation today and they cancelled it as the machine was broke !!! Think my dad was secretly pleased ha he's dreading the mask on it covers his face with holes for his nostrils it's to protect the bits he's already had radiation on 22 years ago as they said it would cause damage xx

Hi Delly, I think that if he can swallow and he is not coughing then he's ok. While Dad is undergoing radiation, he must be being seen , at least weekly, by the Radiation Oncologist. Go with him to this appointment and insist that he is seen by a speech therapist. Ask for an urgent referral. As a patient who has had a total Glossectomy he must be seen by a Speechie, to help him with both speech and swallowing. ( though I think he is doing well with the swallowing despite the surgeon). I hope you get better support through this next phase of treatment,
Tammy

Glad he seems to be feeling up... hopefully it will continue... hugs.

Thankyou tammy x yes he gets seen by a doctor every Wednesday now so I will go with him x I've been reading swallowing can get worse with radiation so that's panicked me a bit :(( x I'll ring his McMillan nurse tomorro and ask some questions also I'm hoping radiation doesn't cause to many issues as he's really doing well at the moment x one thing I've noticed is he's a bit unsteady on his feet seems a bit off balance just since the operation x thankyou Cheryll :)) xx

Hi, Delly - good luck to your Dad with the radiation. My husbard did not mind the radiation mask because he knew it kept in the correct position. He still has it in the basement and it creeps me out every time I go down there!
Maria

Thankyou Maria he struggling because he can't block his throat so the saliva goes back and chokes him so he has to keep getting out of mask and breathing he feels bit down today cos there's six week of this x but everytime he stops them he has to start again x he says it's the positioning and the scan cos it to long the radiation is ok but he can't lie flat for that long xx

That sounds awful, Delly. Surely there's some sort of technique they can use to help him.
I know what he means by the scan. It's quite a lot longer when they do that.
I hope everyone can make a way for him to be more comfortable when he has the treatment. Once everything is up and running times goes quickly. Crossing my fingers for you:)
Maureen

Hi Maureen there nothing they can do except stop get him out let him out and then start again he really panics he can't block his saliva from going down so it ends up choking him hopefully it will dry up soon and then won't be a problem lying flat x three down 27 to go xx he a feeling very tired but think that's all the trips to hospital it takes it out of him xx he's speaking a little bit now only now and again but that's good x

Hi, Delly
Your poor Dad - that sounds really miserable. The only thing I could think of would be a suction tube, but I don't think that woud be feasible by the radiation machine.
My guess is that your Dad is going to hit his stride with this in a week or so and be better able to cope emotionally at least.
Best wishes and thinking of you both!
Maria

Hi Maria the mask to tight to get any sort of tube in only got his nostrils on show bless him xx he said he only stopped once Friday he is trying different techniques x he's feeling very tired already is this normal so soon he's only had 3 lots so far xx

Many patients take anxiety meds before they go for their radiation treatment. Talk to his doctor right away about getting something to help him get thru treatments. It really is a horrible feeling being bolted down to that tiny table while you are left alone in that room with giant machines moving all around you.

Fatigue will unfortunately get progressively worse. This is where intake plays a huge role. Every single day he should be taking in at the very least 2500 calories and 48-64 oz of water. If he can push and do more than will only help him to feel better and get thru this easier. Radiation treatments for OC patients are brutal to say the least. Take advantage of any tools to help get thru it easier. Ask the doc for an open prescription for extra hydration in the chemo lab. This will make a big difference in how your father feels too. If you can get him to get this done say 3 times a week it will be a big help in boosting how he feels.

Hang in there, we will get you both thru this.

Hi christene thanks for reply what's hydration in the chemo lab ? X How many weeks after radiation fiinishes do you think my dad will start to feel better does it take a long time. Xx

Been to dads today he struggling with his feeds now they keep coming back up his throat ? He's just started donperidone so hoping that works x he had his last feed at 7 last night and it woke him up at 4 this morning so it must be sitting in his belly x but if it's true what they say and fluid going in his lungs surely the food will be if it coming up and going down again x he spits most out but a bit must be going down x is there any good medication I should ask for x also will the radiation doctors give him cream for when his skin gets sore because he's told me to get some e45 cream surely they will have something better xx

Delly, hydration is when a patient is given IV fluids to help them to avoid dehydration. The chemo lab is where the hospital gives chemo to their patients. When undergoing radiation treatments for OC, patients usually struggle with their intake. Getting extra fluids helps them to instantly feel better.

Recovery, like everything else is a very individual thing. From what Ive seen on this forum over the years I would estimate 60% of OC patients have varying degrees of struggling with rads. Another 30% of OC patients really struggle and have a very hard time with their treatments. Many end up hospitalized due to malnutrition and/or dehydration. Not meeting their daily minimums of at least 2500 calories and 48-64 oz of water plays a huge role in this 30% of patients. Then there is the lucky 10% who sail right thru barely noticing the side effects. Ive noticed these are the patients who push themselves with intake (usually exceeding the 2500 calories and getting 64 oz of water every single day). Many also have a light exercise program or even taking short daily walks. Usually the lucky 10% also do not have chemo which makes it slightly easier as well. But the chemo or no chemo is not really anything that the patient has control over, its their treatment plan. The one common thread is patients who do better with their daily calories and water will lose less weight and generally feel better than other patients who arent able to keep up the daily minimums.

Your father should have some sort of cream for his radiated area. There are many different ones both over the counter and prescription that will work. The common ones are aquaphor (nonprescription), silver sulfadine cream and beta val (both by prescription). cream never should be applied right before going into treatment as it could negatively affect the radiation area. Always use a thin coating and pat the cream on, letting it soak in, never rub it in. When I went thru rads, I would shower before I went for rads, after I finished I would pat the cream on my neck during the 45 minute the ride home. After a few hours I reapplied another thin layer of the cream and again before I went to bed. If his skin becomes oozing wounds from rads, he should still continue to use the cream but also cover the areas loosely with nonstick gauze. My neck was a mess, open oozing wounds, unbelievably it never scarred. It healed very quickly after finishing rads.

Your father should be sleeping on an incline if doing feedings at night. He should stay still after it is finished for at least a half hour.

Hope this info will help your father. Best wishes!!

The domperidone should help. If his food is not going down it may be a motility issue, which is when the intestines do not move enough to get the food down. It seems that many people with a G tube have the problem. Take the domperidone about thirty minutes before food. You should notice a difference in a couple of days.

Thankyou christene this helps a lot I will ask about hydration for him x and thanks Gloria I will tell him to keep it up with the medicine x he stopped taking it as he read the side effects and it said you can develop breasts ha I said that only one in however many million but he wrote yeah that probably be me xx saying that I've put his lottery on last two weeks and he's got three numbers each time ha think I better start putting it on I must be good luck ha x

Delly,
Keeping you and your Dad in my thoughts. Let us know how you are both doing as you have the time.
Maria

Hopefully he's healing and things are going good on your end. I know it can seem overwhelming with everything - hugs

Hi all dads on day 9 of radiation tomorro x having trouble with his feeds they just keep coming up his throat into his mouth the dietician coming in the morning x he's not putting any weight on they said he's not doing them right he putting them in to fast but they never shown him how to do it. So he just syringes them in like you would medicine they want him to use the drip one in the night to try get calories in him x he's still struggling with saliva there's so much in his mouth he can't speak with it all they've give him patches for neck to lessen it but it's doing nothing x I rang his McMillan nurse last Tuesday still not had a reply I've lost a lot or faith in McMillan which is sad to say as I'm sure others have good experiences with them but so far we've had no help whatsoever x just gotta get through this radiation now then hopefully can work on speech and if he's ever going to swallow again fingers crossed xx hope your all ok and doing well xx

Hi all quick update , 12 more rounds to go ! Dads been very down had a lot of trouble with feeds and loosing weight trying a pump for night feeding for 10 hours this seems to be settling better and I hope won't cause any problems x had a lot of sickness which was worrying but feeding like this seems better x I'm so praying one day dad can drink even if he can't eat I hope he can drink :(( x hope every body is doing well x

I'm glad the night pump is improving things. He has had a very hard time. Wishing you well:)

Maureen

If your father is able to take small sips of water thru out the day this will help keep his swallowing function from forgetting how to work. Even if it hurts, he should continue to swallow at least several times a day. As long as the liquid isnt going into his lungs, causing aspiration. Check with his doc to be sure its safe.

Hi Maureen how is your radiation going how are you feeling x hi christene dad was drinking and we went to hospital and surgeon said you must not drink they won't do a swallow test till after radiation complete and healed :(( he can swallow and he doesn't choke but they said it could still be going in his lungs called silent aspiration so they have scared him to death I'm worrying that the surgens here arnt as good as in other parts of the world as he said the only thing he thinks will improve is his speech :((. He still has tiny sips when rinsing his mouth out so hopefully this will keep his swallow glands working xx he's pump fed at night now and that's better for the sickness x can radiation make you feel sick ? As I seem to think it's that ? X. Still so much saliva in his mouth so doesn't talk it a just filling up constantly even radiation not drying it up like they said x physio coming tomorro to try help but I don't no what they do xx

Hi all dad finished radiation now very sore mouth and face and lips are so swollen :(( feel so sorry for him but just got to wait now till it all heals and see what next step is x saliva still there not dried up at all :(( still pours out when tries to talk so won't talk still writes down x still not seen any speech therapists or McMillan nurse x just got to wait and see what next step is x they said 6 week of healing now xx hope your all well xxx

He's through the radiation already! Well done. I know it was a very hard process. The soreness will go down and a nurse and speech therapist to help with rehabilitation will be something to look forward to. How is the feeding going?
Best wishes
Maureen

Hi Maureen how are you after your radiation x dad really struggling at the moment doesn't get outta bed most days he feels sick a lot and his face is so swollen especially his lip xx still having saliva problems nothing dried up so goodness knows what's next with that xx was you sick and very sore x dads only having his night pump feed which is 10 hours which is a lot better but scares me because of pneumonia x he should have bit more in the day but can't manage it at moment xxx

Delly, the worst of radiation is the last few days and first 2-3 weeks after finishing treatments. I know this is very hard on your father. Im sure for you its even harder to watch someone you love going thru so much. Being a caregiver is tough!

Intake is what will make this easier and help your father feel better. He probably doesnt have much energy right now so maybe you could convince him to take 2 more cans while he is propped up watching tv? If you think he isnt getting enough water (48-64 oz daily), you can also talk to his rad doc and ask to get extra hydration every other day. That will help boost him up right away.

Hang in there, your father will begin to feel better very soon. Most of us woke up one day about 2-3 weeks post rad and actually noticed we didnt feel quite as bad as we had. Recovery is full of ups and downs and even some setbacks so watch your father closely and report any changes to his doc right away.

Hello, Delly. My radiation was one year ago now. I remember feeling better a couple of weeks after treatment ended. It took months before I was really over it, but yes, at six weeks the skin and mouth had healed. I'm crossing my fingers that your father improves a lot.

At a talk I went to at the hospital, a speech/swallowing therapist showed us how swallowing is affected by the little flap of skin at the back of the throat called the epiglottis. It closes the windpipe during swallowing. Maybe this has been affected by your dad's surgery and is why he has been told not to drink.

I hope you get lots of help and good advice in the coming weeks.

Maureen

Sorry Maureen I didn't see the year ha xx thankyou ladies it's a week tomorro so hopefully two weeks to go x they found a lump in his neck so we there on Friday for a biopsy they said it might be scar tissue so fingers crossed cos I don't think he could cope with more xx take care speak soon xxx

Hi all not good news for dad the lump wS cancer so so sad it's aggressive and grown whilst having radiation :((( never been so heartbroken :(( xx MRI was yesterday and results tomorro x they not sure if there's anything surgically they can do :(((( xxx