Hello Vickie,

Sorry to hear what you're dealing with. I know from experience it's difficult.

I'm 29 years old. Last year I had radiation/chemo for a stage 3 SCC on the tongue. Didn't work. In December I had a glossectomy that claimed 73% of my tongue. Had the forearm flap put in. I'm almost 6 months out from surgery now. My speech is about 85% of what it was. I sound somewhat different, some slurs here and there, certain sounds like the letter G followed by L are hard to do, but mostly everyone understands me just fine. It's harder to talk at louder volumes and sometimes I spit more than I want to (which I guess ain't so bad since most people have their salivary glands destroyed anyway).

I have not returned to eating solid foods yet. Even soft ones are difficult. It's the movement inside the mouth that makes it hard. I've had a tube since surgery but it's being taken out this week. I get 3000 calories a day by mouth via liquid nutrition. I'm told I should be able to eat. It's really up to me how soon. As much as they help, you kind of have to teach yourself and learn your own equipment. That is my biggest challange. Miraculously I taste everything almost as much as I did before cancer. Drinking liquids is more difficult then the automatic reflex it was before but I manage pretty easily now. It can be hard to clear that last bit of liquid from a big gulp - it kind of pools in your mouth - I have to cock my head back to get it all or spit it out.

You have to accept a new "normal" but once you do, you adapt and can live. You have to really.

Hi Vickie

I am not sure if your husband has had the surgery yet but my partner James had over 50% of his tongue removed which was replaced with a radial forearm flap. All went well and although he could not taste or eat properly for a good 8 mths (survived initially on fluids provided by the nutritionist and then soft foods)he can now eat almost anything and has recovered a good amount of taste. We are now 15 mths down the track and he is doing really well. I do hope all is going as well as can be expected for you both.

Take care of yourself
Kris