Hi Gaza 11 me to , been to hell and back , so I advise anyone to ask more before surgery , im happy to be alive , but once Cancer removed ithats when recovery hits you as it's seems you in limbo , I've now got disphagsia , numb left side of face ear and head to , and inside of left mouth to , due to nerve damage from lymph nodes being removed , but others I've spoken to have recovered really well , but I just think more advice and help should be there for Mouth cancer patients , even eating out now a nightmare as only on small amounts soft diet , Goid luck with everything for the future and to all with oral cancer issues and struggles too x

Hi

I had my surgery in 2013 and I have all the problems you are describing. Numb all around my neck and face, frequent sore mouth if i talk or eat to much . Teeth/ jaw  hurts if I yawn and I do choak if I swallow dry food without a drink. However, I've learned to live with all that and enjoy life as much as possible now.  It's very hard to start with but you learn to adjust ay. Take care Carol 

Yes , you sure do , sometimes good days , but just learnt to adjust now , but must admit very frustrating , just glad to be here enjoying watching my grandchildren be happy and grow xx

Hello there

sorry for your diagnosis. I had T3N0 oral tongue cancer. surgery 3 years ago in June (partial glossectomy and free flap reconstruction, neck dissection) and radiation that ended in the August. Radiation is very painful but I managed to keep a liquid diet by mouth. Started eating soft food a couple of weeks after it finished. Slow improvement over next couple of months - eating out by November. Recovery works have been a couple of months quicker if I hadn't needed radiation, I would say eating is now 95% normal for me. I can eat whatever I like but some things are a bit trickier as I have less tongue mobility (from surgery not radiation. Speaking is also about 95% - I spit a bit more than before and mild lisp on some words. But I've done public speaking no issues.

best wishes for your treatment. 

Thank you all for your life stories and useful information this is really helping me knowing there is light at the end of the tunnel even if we have to adapt to new ways of eating and speaking

yep eating is a nightmare, im still on complan shakes for my main diet ,with the odd treat if i can manage it sometimes of mash potato and a bit of mince and gravy,my chemo /radio was delayed for 2 months after surgery and ive no doubt that mentally how quick my tongue healed i thought i was on the road to a near full recovery ,therapy competely knocked me off my feet after the first month,but as you say were still here and have to make the best of it ,i made a couple of good friends on ent who sadly didnt make it in a similar position to me , take care noonie64 and to you all in the same boat  

Hi Winter

I am surprised speech therapist didnt send you home with a supply of nutri sip or similar. You really need this at this time esp if you go on to further treatments. A call to GP office to get it on script.

You definately wont be able to eat enough to meet your bodies requirments.

I never ate at all in hospital and was surprised they let me home.

I must admit to easy eating stuff at first like soft ice cream, soft jelly, milk then went onto creamed soups. Its def a gradual process trial and error lots of wasted food. A small bit of food in mouth along with a drink of milk to help the food move without using tongue too much.

I was deemed as not a candidate for chemo(due to medical issues).I didnt have RT either but my husband did(head and neck) .He was fine upto halway through course it went downhill from there. He also found the aftermath hard going but after 1 year he picked up and was almost himself again.

During RT after losing his taste his tolerance of food was so bad at one point all he ate was porridge with sugar and a big helping of cream to boost the calories. The road back to taste was a slow one. He found he could taste pickles and could be found in middle of night munching on them.

Funny the things you remember :-)

Take care wishing you well on your journey xx

Thank you so much. I have been sent home with energy drinks I have to have two a Day. At present I'm living off home made soups , smoothies, mousses, yogurts. I've also found a firm that does level 4 purée foods which I had delivered on Friday. Felt so good being able to eat I've had chicken tikka rice and spinach all level 4 purée tonight and I could actually taste the curry. Not sure about the spinach but ate it anyway.

I'd got to the point where I was making food and trying to purée it enough to eat and it didn't work, I was starving and frustrated and broke down for a good day and half. 

Amazing how just getting something delivery at the correct purée diet helps lift u 

Thanks x

HI I'm 3,5 years post radiotherapy for tonsil cancer with several affected lymph nodes.my blog www.RadioactiveRaz.wordpress.com might help tips and links  to other sites. I had a huge ulcer full,length of tongue for  at least 10 weeks I had 35 radiotherapy and 2x10:hour chemo sessions. It's not easy but am now happliy living my life. I had a n g tube 8n for 6 weeks I survived in ensures when it was taken out at least 6 a day which allowed me to try ti swallow and eat. Eggs will become your best friend for a wh8ke. Now I can't eat salads or anything)ng spicy small,price to pay Hazel