Hi guys

Just wondering on how others who've had tongue cancer manage with speech? How do you go on the telephone? Do people who are not aware of what you have been through understand you well? I have had 1/2 of my tongue removed and reconstructed with a flap from my forearm. My voicebox was pretty badly burnt by radiation & I was unable to speak for about 9 weeks after....eewwww how those burns & ulcers hurt. A year on I have good days with speech where I feel pretty damn proud considering! & other days I just want to burst into tears because of the frustration of the fact that how my voice still sounds in my head is not reflected in my speech. Just wondering how any other fellow surviors find this challenge? I still need one more op on my skin graph as it is a little too big(& I'm hoping this will help more with diction)but the thought of having another general freaks me out for the time being. Vicky I am shocked to hear how much radical surgery you had, you are an absolute legend for staying the beautiful person that you obviously are & for being such a wonderful support for the rest of us who join this site.

Thanks, Kelley ( :

Hi. Im new to this site. I went thru the op 5 weeks ago and the removed half of my tongue. im conscious of my speech but people say im perfectly understandable. I try not to use the phone much but my family say its fine and getting better. Has anyone said anything to you about saying the alphabet a few times a day? They have to me and it helps.

Russ, oh yes do continue to do that it does help so much. I had half of my tongue removed the 1st time I had "C". I could do everything that I could before. No one ever knew that I had half of it removed...You will be fine. Just practice on it when you can...It will be back to normal,, well mine was. Best of luck with it,,,,Always Vicki Lynn

Hello Russ. Well, as veteran of radiotherapy on my throat I found the worst part was having the mask made as I suffer from claustrophobia. But I just imagined I was having it done for posterity at Madame Tussauds and it didn't last too long anyway.
When you get used to having the RT you are in and out in no time. You have a pretty sore throat at theend of it but you will find they are pretty liberal with the painkillers and that soon goes.
Five years later, still not'all clear', but gwetting there I hope, the radiotherapy has still to be reckoned wwith. Not sitting in the sun with throat exposed. Ever. Lots and lots of colds and phlegm as the RT goes for your immune system.
But that's it really. And a small price to pay for getting rid of tnat tumour. Touch wood.
You will find when you start that you are surrounded by cheerful optimistic staff and patients, and it becomes like a little club, comparing notes.
It still is. I would rather have had an honourable discharge from the club but what the hell. La vie est belle. Usually.
Good luck wuth the radiotherapy. Ishbel

Hi Kelley

I had a total glossectomy (whole tongue removed) 18months ago, they replaced it with a muscle from my back, I was told that there was a chance I would not eat drink or speak after the operation, I had a peg fitted through my stomach wall as a precaution. I had every confidence in my surgeon and he came through for me, I can now eat drink and talk, even on the phone, like you though I sometimes forget as the voice I hear in my head is as I spoke before. Obviously I don't speak as normal and find it difficult to say the words where you need to put your tongue at the back of your teeth. The worse thing for me is the people that are ignorant enough not to even take the time to listen to what you are saying. I don't expect pity from people but a little bit of time and patience would help.

Hi Dawn

May I ask how old you are? How did you find the cancer & why was it necessary to have your whole tongue removed? I have NEVER heard of such an op where they can take a muscle from somewhere else in your body to reconstruct your tongue????? Do you have control over the new muscle similar to your tongue? I am totally amazed as to why they do not use this method with op's like mine? You would think that they would attach muscle instead of just filling the space with a skin graft that does nothing besides this...I would be horrified to think that also the forearm graft could have been avoided. Please tell me more as I am very interested in learning more about your whole experience & the fuctionality of your new tongue

Thanks so much for responding
Kelley

PS. By the way guys no I was never told about saying the alphabet everyday. I did have speech therapy for a while but found it very frustrating. Thanks for the tips!

Hi kelley. I have had speech therapy a couple of times and have been discharged from speech therapy now. What a wonderful feeling that was when she said that to me. It is another step in the right direction for me. Are you still having it? Im sure you will be discharged from it soon. How are you? You are always in my thoughts and prayers.

Hi kelly, I met a guy called Ray at Charing cross hospital on my last visit who had same type of op, met him about three months ago, very difficult to understand him, I was amazed how much better his speech when I last saw him, so hard an difficult it is I am sure progress can be made. Big Bear Hugs Garance

Hi I am new here, I am really standing proxy for my father who 18 yrs ago had a total laryngectomy(removal of his voice box) which he lived a totally normal life until about a year ago when he started having pain in his mouth, the Dr missed dx him for about 1 yr. And when it was discovered CANCER it was to late to do anything else but a total glossectomy, now he is depressed he don't want to eat, everything has to be blended. There must be another way for him to live a somewhat normal life. I quess if someone could my give suggestions on how he could or what he could eat. We are just in the dark and the Dr are not much help, so please any ideas

Hi,

my op was a year ago a 3rd of my soft palate was replaced with tissue from my hip the palate forms a muscular arch that extends back This action closes the opening between the nasal cavity and the pharynx, this was shortened and also reshaped because of reconstructive surgery this causes constant air flow when so i speak like i have constantly got a cold but worse it is virtually impossible to make words and letters distinctive when they stand alone (B OR P).

I will never form the same sounds as I did before surgery my SALT has advised me I can not make things any better I just have to speak slowly to ensure all the words dont merge into one.
I have a two year old daughter and during my RT WHEN SHE NEEDED TO BE EXPOSED TO "NORMAL SPEECH" she missed out as a result her vocab is behind her peers but her listening skills are remarkable and her concentration span is higher than most her age we read stories all day long she would rather read a book than play with toys
I am very conscious that I am unable to articulate what she needs conversations with adults are easier as they tend to predict what I am about to say I do have to repeat my self on the phone I spell words out but I muddle through literally sometimes when I am out I would still rather write than speak it is faster and easier especially if the other person is unwilling to listen

I have to speak at uni and participate in discussion often individuals who’s mother tongue is not English find it hard to tune into the sound I make and the way I speak
Mel x

If anyone has any advice regarding my daughter

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