T4 tonsil tumour spread to the tongue.

Hi Benny 

Welcome. So sorry you are here but there are lots of us who have been there and can give advice. 
Regarding your swallowing. Are you in touch  still with your SLT team? They should be giving you some advice. Have you been given some swallowing exercises? If you are taking all your nutrition via stomach tube it might be time that you tried at least your fortified drinks that way? 
Energy loss is par for the course I’m afraid. The RT gives a hit to the base of your brain which is why we suffer from radiation fatigue. It was a year before I felt ok with this. There were times when I got hit by such an overwhelming  wave I felt poleaxed. 
it does go. I promise. 

Just listen to your body even if it means having s nap in the day even if you feel you don’t need it. 
I’m three plus years clear and doing very well and you will too 

Hi Benny can only  echo what Dani has said although for me the radiation fatigue lasted a lot longer I was 3 years before I stopped my 20 minute power nap in the afternoon. Just listen to your body these links may help you. 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022
Hazel x

Hi Benny can only  echo what Dani has said although for me the radiation fatigue lasted a lot longer I was 3 years before I stopped my 20 minute power nap in the afternoon. Just listen to your body these links may help you. 
The fatigue hits you like a wave invetwrnn I was fine now happily living my life it’s A marathon not a sprint you’ll get there we all do. 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022
Hazel x

Hi, BennyM You are still early in your recovery, so things are still having to heal and get back to normal. I had a RIG which I was reliant on from about 3 weeks into my treatment, for about 10 weeks, then I started to have just a small amounts of very soft food, things like yoghurt, semolina, rice pudding, quite runny porridge, soup etc, then on to things like poached or scrabbled eggs, also add double cream to anything you can and drink lots of full fat milk, Cravendale milk is very good,  Really anything that went down easiest, during this time I was reducing the amount of feed through the RIG until, I didn't need it anymore. What your team have told you is right we are all different and we heal and recover differently. You will get there, it is trial and error. Keep us updated, we are all here to help each other if we can, so feel free to ask any questions you have. All the best.

Regards Ray.

Thank you all for your answers and advice - it is reassuring to know that my recovery isn’t taking an extraordinary long time- I think I picked up the impression it would only take a few weeks. . . 
So I’ll hopefully continue to improve steadily and slowly and eventually get where you guys are.
Thanks also for the links - have started reading them.

Hi Many people get the idea it’s a few weeks sadly very few of us bounce back thst quickly age does play a part as well. I was 61 now 65 and happily living my life. 
It’s a marathon not a sprint. 
Hazel x

Hi Benny 

Sad to hear of your situation but you have come to the right place. Just over 3 years ago I was in a similar situation.. stage 4 tonsil, tongue and lymph node. SCC... similar treatment and struggling to see any progress...I pretty much asked the same question and was reassured that progress would occur given time. Anyway when things improve.. they improve quickly and now 3 years later I'm fully recovered and living my life normally..if you can stay positive and share your feelings you will get through this with the right support. 

You've got this

Chas 

Thank you for your encouraging reply, I suppose at the moment 3 years seems quite a chunk out of life - but time does have a habit of going quickly when you look back. I’m learning to accept small steps in the right direction. , . .

Thank you for the links- such positive reading is great!

Thank you for those links - they’re very insightful and cover so many aspects of how  much life changes for someone newly diagnosed physically and mentally too. It helps you not to feel alone in the situation.