Our friend has recently had the majority of his tongue removed through mouth cancer. Does anyone know of any communication techniques that would help us. Does anyone know about tongue reconstruction in uk?

Dear Alan I am sorry to hear that your friend has had to undergo such a drastic operation. There are many variations so no 'one' answer to your question but I can only tell you what was my experience. I had more than half my tongue removed and replaced with what is called a 'flap', which is a piece of soft tissue with a good blood supply (from forearm in my case)which is attached to the remaining tongue and tethered (sewn)to the inside of the cheek. Depending on just how much tongue has been removed will in turn affect the quality of speech and ability to swallow and eat. In the immediate post-op days your friend will have had a trachy fitted which means he can't speak at all (paper and pencil a must), but before he is allowed home that will be removed and he will be given exercises and advice on how to swallow plus help with his speaking. A Speech Therapist will visit him at home for some time afterwards.

I ask people to tell me if they can't understand me instead of guessing or pretending to understand. A sense of humour is vital - I could write a book on some of the mix-ups in the early days! And, of course be patient with him - it is very tiring trying to string a sentence together. Oh, and one other thing, he might well dribble a lot (I wore bibs for the first few weeks!!)

I hope your friend will use this website - it has been a God-send to so many of us who have or had mouth cancer. Send him our good wishes.

Thankyou for your advice. My friend is now out of hospital and will, actually, be visiting whitley bay tomorrow! He struggles writing but we're kind of getting by. He still has his trachy and yes does dribble but he is thankfully well. He doesn't have internet access but we'll keep him informed of any developments from this site. Where did you have this flap operation? Was it newcastle? My friend had his operation in darlington. Is this a common procedure? I did hear that people who have had this operation can even talk again. The doctors have told him he will never talk again. Was your flap fitted during the operation or after it we are all hoping the speech therapist can get him to swallow again. Its just a waiting game now.

This message has been edited. Last edited by: Alan Bennett,

Hello again Alan I had my op at the RVI in Newcastle and, yes, the flap was fitted during my first (16 hr) operation. I can (and do) talk all the time! I can only assume that there is a very good reason why your friend wasn't given a flap - no two operations, or cancers for that matter, are the same it seems. If you or your friend want to contact me you could send me a private message and I can give you my phone number. I may well bump into you on Whitley Bay beach whilst I'm walking the dogs tomorrow!!