Hi ocsurvivorson

I'm about to go through the same surgery as your mum. When I asked about a skin graft they said it didn't need one as the sides of the tongue will be folded in and a tip formed to help with speech. I had an appointment with a speech therapist and dietitian from the hospital, your mum should also have this to help her manage after surgery.

Wishing your mum all the very best.

Hi Rivendell

Thank you for your response! Sorry that we're meeting under such circumstances. I really hope your surgery goes great and you recover soon! Please keep us posted on your progress if possible.

If you don't mind me asking, is your affected area on the side or top or base of the tongue? I completely understand if you prefer not to respond. Thanks again!

Hi ocsurvivorson

Thank you for your kind reply! I had a small round lump inside the middle of my tongue 1cm from the tip. Biopsy last March discovered it was a soft tissue sarcoma - rhabdomyosarcoma.

There were cancer cells on the outside of the tumour they removed so there'll be some in the scar tissue which they want to remove with a GA over night stay 2-3 days. Because the tongue will swell during surgery it's very likely I'll have a trachiostomy and a nasal feeding tube while in hospital, taken out before coming home. I have to self-isolate 7 days before surgery.

The surgeon will cut out the scar tissue 1cm or so from the middle end of my tongue and fold the sides of the tongue in to form a tip, with the tongue ending up shorter than before.

Consultant said afterwards I should still be able to talk, eat and swallow, though the speech will sound a bit different understandably!

It's going to be hard to eat enough food in the weeks after for a while, because of that I'll feel quite miserable - there's nothing like a good hot meal to cheer you up! but I'll make do like before when I had the biopsy and live off porridge, yoghurts, mashed banana and custard.

For the weeks after surgery I'm going to 'talk' by texting and using a notepad and paper, it'll be a different way of life for a while! 

I hope your mum finds strength and love around her to help her manage well, she's certainly got you:)

All the best.