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?