Tongue Cancer

Hi  Welcome from me and well done on getting through treatment

I wouldn’t have advised going cold Turkey in the opitates. I did a phased withdrawal and was fine. But too late if youve stopped them maybe a good few more days.
As for food the mantra food is fuel served me well. I started in soft foods atbweek 3 supplemented by orally drinking 6 ensures a day which gave me 1800 calories. I was advised ti eat 2500 calories each day and drink 2-3 litres of water. My ng tube was out week 3 so it was a case if eatung.  Poached eggs in well buttered toast. Well buttered crumpets. Jellies trifles custard were my main stay. Meat took longer a slow cooker was invaluable slow cooked lamb slips down quite well . Potatoes and bread every longer. Will pop a couple if links in that other head and neck patients have done for food. 
I’m 4.5 years post radiotherapy now and dry mouth at night still plagues me. I used xyimelts at night time.  Sugar free gum can help in the day tune to stimulate saliva As for eating try a warm drink ti help with swallow. 
https://www.yumpu.com/en/document/read/67107065/eating-with-confidence

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

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

It was really good of you to get back to me, I've just checked out the links you've sent and they'll be really useful; I appreciate you getting back to me alot.

Thankyou so much .

Hu Brun ni probkem always happy to help out. If you’re still in pain please don’t hesitate to start the pain killers again. I was on cocodomol and oramorph then gradually went down to paracetamol. Remeber treatments pretty brutal and takes time to recover.  Any questions please pop on here. 
Hazel 

Hello. I’m 9 months post treatment for tonsil & lymph node hpv 16

I used my PEG from week 4 of treatment for liquid meds, hydration & linked up to a pump for overnight feeds of 2000-3000 calories. I couldn’t eat orally for weeks. Once treatment ended I was on codeine & morphine for a few weeks then reduced them gradually until I just took paracetamol. 
Treatment left me with no taste other than salt! Over time this improved but I still have days when everything tastes salty. I have a permanently dry mouth which is helped by chewing sugar free gum, lots of water & a Xylimelt at night. 
Eating was a struggle for weeks. I tried Skyr, rice pots, custard, mousse type desserts, soggy weetabix with full fat milk, creme caramel, tops of mini trifle, dairylea triangles, tinned peach slices…. Trial & error I had my PEG out at 11 weeks post treatment but gradually stopped using  it 3/4 weeks prior. I had a Scandishake a day on prescription ( 600 calories) to make up the calories. 
I would think the issues with sleep are side effects of coming off the meds? 

Brum08 said:

Another one is I am going  cold turkey stopping taking  the opioid pain killers , and can't sleep is this normal ? How long does it last .

That’s not the way to do it. No wonder you’re feeling rubbish. If you must you can expect to feel awful for a week or so. Believe me. I speak from personal experience. 

We are all different but as a rule of thumb you should be eating soft foods happily by six weeks and have turned a corner by 12 That’s a generalisation but it’s what a lot of people report. 
My major improvements in saliva and taste took a year. 
Chewing gum helps get saliva going and there are a couple of posts on the acupuncture I had in my blog linked at the bottom of this post. 
I didn’t start putting any weight on till I was 18 months clear. 
You’ll get there. Slowly slowly 

Hi Blod.  I just wanted to say I went pretty much cold turkey with the morphine etc.  I wasn’t advised otherwise really.  I had a lot of withdrawal symptoms (that I didn’t know were withdrawal until I googled it all later!)   Symptoms included leg twitching, yawning, upset tummy, insomnia. It was awful.  I thought I was going mad, but it all passed fairly quickly.  Don’t despair   I felt much better being off the morphine. My eating took around 4 months to properly improve.  One thing that helped me was double cream on chocolate mousse snd on weetabix.  It was easy to swallow and did not cause discomfort in any way for me.  Also high calorie.  I didn’t have a peg and didn’t loose any weight either. Wishing you all the best.  Lizzie

Hello Brum08

I'm at a similar stage, finished treatment on 11 November & was in a bad way for 2-3 weeks after. I came off morphine too suddenly and had horrible arm twitching - I went back on it and tapered off. I was lucky with eating, I was able to get rid of my NG tube before Christmas and my taste buds & swallowing are not bad. Earlier on I found porridge one of the easiest things to eat. As others have said, dry mouth is a problem. I have to wash food down with water or a hot drink. Chewing gum and Xylimelts are helpful. Eating hurts my throat, paracetamol well before meals helps. 

It's a long haul - good luck, we will get there!

Catriona