Swallowing

Hi sunsetprincess.

I finished treatment late in 2020 and i gradually improved for about 2 years. Like you i could only manage light fluids and it lasted a long time, i remember trying to eat pea soup about 3 months after treatment finished and the pea welded itself to my tongue!.

It does improve, it just takes time, main thing is keep eating even if you supplement with the peg. And stick to the exercises, you will get there.

Good luck, i know how frustrating the first year is. 

Trev

 sunsetprincess 

When is your next review? You should tell them how difficult swallowing is. What swallowing exercises are you doing? 
I had RT for BOT cancer and by six months I was eating well. 

Hi Beesuit 

Thanks for your reply. Initially I had 3 months of chemotherapy, I then had 30 sessions of radiotherapy as well as more chemotherapy every week. 
My cancer is HPV positive T3N3M0

Thanks Trev

You have given me some hope

Ooops forgot to say what exercises I’m doing Lol 

I do the one where you put your tongue between your teeth and swallow, lying fiat and keeping shoulders on floor look at toes, lying on floor and keeping shoulder on floor look at toes repeat 40times  and hold for 1min relax for 1min and repeat 4 times. Open mouth wide and hold for 5 seconds relax for 5 seconds….

I try to do these 4 times a day, however some days it’s not always possible due to other commitments 

Ah sunsetprincess  your treatment was more intense than mine so it’s not surprising you’re still having problems. Just hang on and keep trying but do get your SALT team on it. 

Thanks Dani 

Ive got an appointment on the 27th September with dietician and SALT so will have a chat to see if there is anything else I can do.

Jacqui

Jacqui

That’s good. There are more exercises for swallowing but they are the experts. Good luck. Let us now how you get on 

Hi sunsetprincess

I finished my chemoradition on the 14th July 2023.

 I struggle with most food whether it's swallowing or the taste.

I didn't have any feeding tube as I kept my weight up best I could with food. I just eat as much as I can, when I can.the dietician was pushing her milk shakes but I just couldn't stomach them.

I still have the same diet of runny porridge with heather honey.

4 Scrambled eggs with fat milk added butter or poached eggs.

Home made thin soup chicken, boil the bones and add cut up thin rice noodles. These are so soft and I can swallow these no problem, puree veg and add that if you can. 

I can eat yogurt but only plain as fruit still burns my mouth and throat. 

Watching my husband eat pizza with a beer is getting me down a little but I will have mine asap 

I still do the exercises too. V important.

I hope it gets better for you soon and you will have that burger!

Best wishes 

Kathy 

Hi Sunsetprincess,

I know exactly how you are feeling as I feel the same ! I completed my treatment for base of tongue cancer at the end of June and am still finding it a struggle to eat although from what I have read that appears to be the norm.  I have no appetite & although I have had the PEG removed & am maintaining weight it is a real effort. I ,like you get quite depressed at the situation worrying that there is no light at the end of the tunnel .I know I need to be patient & vigilant with my swallowing exercises but it can be very difficult to stay positive at times.In addition the ongoing tiredness is very debilitating.

I actually attended a couple of BBQ’s recently & while I only ate a small amount I did manage to eat something & feel relatively normal ! 

Reading Trev W’s comments offer hope, albeit he mentions 2 years ! I guess we just have to hang in there !

Good Luck 

Paul