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Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Swallowing. The forgotten art.

Gengiscant
Posted by

I have had a very severe and rare reaction to the radiation treatment for my throat cancer so I am told by the various consultants I have seen over the last few months. I say consultants as I seem to see a different one each time I go to clinic, I get the distinct impression they are not really sure what to do so pass the buck to someone else. That of course could be nothing more than a rather cynical view from a not very impressed with the standard of care/treatment from my original consultant, whose arrogance was only surpassed by her total disregard for anything I might have to say,after all I was only the patient.

Anyway I digress,as a result of my reaction to my treatment which finished last March I have been unable to swallow.Saliva would not go down and wind would not come up. I long for the sound of a good burp coming from my mouth. As the throat had totally closed the first thing they tried was to slide a wire up my nose then down my throat, without going into details, not nice and more important,not successful.

Next was to insert a Nasal Gastric tube whilst under a general anesthetic, this they succeeded in doing by going up via my PEG hole. I was due to go back every 4 weeks to have the tube up sized. this has proved unnecessary as my throat has begun to open itself. So good news there.

So now after 10 months I am having to learn to swallow, fortunately I did not use the ability completely and can swallow small amounts of liquid but nothing more solid as my saliva is still very thick and is difficult to get it to go down the throat..

My one aim is a pint of beer, I will feel I am fully recovered when I can drink a pint of cold beer. At the moment anything fizzy causes to much pain but the day will come.

Anybody got any tips for improving my swallowing.I am having a Videofluoroscopy next week so that should tell me what my muscles are doing and the speech and language therapist Will advise what exercises I need to do but I would rather hear from people who have been through the same or similar experience.

Thanks.

Nina the survivor
Posted by

Hiya - it took me about 7 months to get the swallowing back, i also had the flourescopy thing. The thing that helped me the most was pinching my nose when I swallowed, it seems to give a bit more pressure, I also was set targets for swallowing like five every hour of water then up it the following day. It's a long road, I thought I had had it bad but your story seems even worse, all I can say is that for many months I never thought I would swallow again but I did in the end, you have all my good wishes and thoughts.

Gengiscant
Posted by

Thanks for your post, I might try the pinching the nose thing. I'll may be try it in front of the mirror, that way if it doesn't work, I'll get a laugh.

I was talking to a friend today and he said that I sounded better, as the voice has drastically changed,some say its a rather sexy husky sound, but I digress.

I said to my friend that pleasures with the ongoing reaction to the treatment are few and far between, but low and behold this morning I did something I have not done for 10 months. I was sick, how sad is it that I derived pleasure from being sick, now if I could just have a really good burp, my life will be complete, well apart from quaffing a ice cold beer. Thats completion.

Thanks again for your good wishes.

jonnie
Posted by

As far as exercises are concerned , hold your tongue between your front teeth, and try and swallow 5 times,,this is an exercise that should strengthen the muscules in your throat  and increase your ability to swallow easier. Good luck, also draught guinness is a good drink to try as it has no gasses in it.

Gengiscant
Posted by

" Hold my tongue between my teeth " It will have to be hold my tongue between my gums as what few teeth I had remaining where removed before radiation therapy started.

As for Guinness, I have suffered enough, why would you wish that foul brew on a person. LOL.

Thanks

Clive_r
Posted by

Hi Gengiscant,

I’m sorry this response comes so late but I rarely check the forum these days. I can fully sympathise because like you, my oesophagus was closed completely by the radiotherapy. I got a bit fed up of my ENT consultant telling me how unusual I was and that I should keep doing the exercises. Eventually she listened to me and agreed trying a dilatation. After 3 attempts under a general the last one like you going in from both mouth and PEG hole she realised it was a no go. I had a 1cm stricture that nothing could get past not even a wire. Eventually I was given an operation at another hospital that did open it enough to allow liquid down. It had been almost a year since I had anything by mouth.  Now, I am over 4 years on and I can drink albeit carefully. I have tried for years to eat without success. You are probably thinking “I don’t need to hear this” but it is to let you know you are not alone. Keep pushing for dilatations, I had my last one about 10 months ago. Until conid19 hit us I made a point of going out every day for a coffee, just my way of having a bit of normality. Sorry if this is all a bit negative but if there is anything I can help you with just give me a shout.

Clive