Hi Roberts,

I had stage 4 SCC in my tongue in May 2019. I had surgery in August 2019 to remove my entire tongue. I was told that I would never eat or speak again, without a feeding tube and a tracheostomy.

18 months on I eat most foods and my speech is pretty good. I can hold telephone calls, I can do zoom calls and I am confident face to face with strangers.

Your husband being young - whilst it isn't a nice thing to go through at any age - actually goes for him to aid his recovery and rehabilitation.

He must do the swallow and tongue exercises several times a day before surgery to strengthen all of the muscles around the mouth and throat. This will help when the surgeons cut out the cancer. Then as soon as he can, try saying the alphabet saying the letters by name and phonetically. I would do this twice a day and say the name of everything I could see. My nurses thought I was mad, but it's really help. An effortful swallow is also great physio.

Waking up with the trach is terrifying, but once he's over the initial shock he should be OK.

Texting family and friends was key for my stay in hospital, although I didn't have the energy or concentration to do that until day 3.


Happy to chat about anything for you. I'm in the UK so things might be a bit different, but experiences can still be shared.