Hello 26 year old with ebv positive squamous skin cell carcinoma in nasopharynx here. Localised lymph involvement so neck also being treated. 3 weeks into chemo radiation treatment 3 weeks left to go. Anyone got any tips to help with the last 3 weeks?

Hi. Sorry that you find yourself here but there are lots of us who can give you the benefit of our experiences. Well done for getting to week 4.  I’m 11 months post treatment for hpv positive tonsil & lymph node scc. I had bilateral tonsillectomy, a PEG fitted then 6 weeks of chemoradiation. At week 4 I started using my PEG as I couldn’t eat hardly anything. Do you have a feeding tube? What pain relief are you on? I took paracetamol, Codeine & Morphine when I needed it.  Take it on a regular schedule to get ahead of the pain. Difflam spray can help & Gelclair is good for the ulcers. If eating is difficult try shakes - you can find lots of recipes online. Peanut butter, avocado etc for calories. Listen to your body & sleep/rest whenever you need to. Do you have family around to support you? Treatment is brutal but there is light at the end of the tunnel. I’m sure other lovely people will pop on the thread with their advice. Keep going - you can do this. 

Hey thank you for getting back to me, it’s amazing to here you’re 11 months post treatment! A feeding tube has never been mentioned to me, I’m currently taking cocodomol every 4 hours when i wake up and started oramorph yesterday so will take that before meals and bed, I’ve been managing to eat soups and shakes (well drink lol) however as you most likely felt too i have no appetite.

i have friends and family around supporting me it’s just hard for them seeing me like this which makes me sad, I’ve always been the happy positive person so to now be struggling like this it’s a tough one to get my head around 

how long after treatment did it take for you to be able to eat and taste again?

Where can i get diflam spray and would bonjela help with the ulcers?

I got all meds from my hospital team - so ask on Monday. I got everything on prescription. Do you have your free prescription sorted? It’s for 5 years, ask your GP. I think chemists sell Difflam. Radiation ulcers are different to ‘normal’ ones so I’m not sure if Bonjela works?! Anyone know? Dani/Beesuit?? I had mouthwashes on prescription to help with protecting the mouth - Caphosol was the main one. 
It certainly is hard on loved ones, they feel helpless watching us struggle. I had counselling from Macmillan after treatment ended as recovery is a very slow frustrating process. Taste came back slowly but certain foods don’t taste as they did before. I taste salt in everything. It took many weeks to eat enough to stop using my PEG. You have to just see food as fuel & try anything to get the calories in. Try soft foods - creme caramel, custard, mousse type desserts, add cream/butter to foods for calories. Soups, tinned peach slices, tops off mini trifles, soggy weetabix… It is a slog & feels never ending but it is doable. 

Hi, I’ve just finished week5 & have one more week to go, I’ve been using Diflam mouth rinse since week3 and it has really helped to numb the ulcers and makes my mouth feel generally less foul. Ccnsultant oncologist put it on repeat prescription for me so speak to someone on your team. I’m getting through a lot of it, I use it 30mins before attempting to eat/drink and at other times just to change the taste in my mouth.

Hi Connor. 
Don’t try bonjela  it’s too strong and will hurt 

You could try swishing soluble aspirin then spitting it out  

Ask about a feeding tube if you can’t swallow  Mine kept me alive and kept my weight up  it made all the difference to my recovery  

From mid week 4 all my food and meds went through my nasogastric tube. There was no way I could swallow anything 

Pain killers. Long acting morphine twice daily, oramorph alternated with paracetamol every two hours. Taken by the clock ahead of the pain was a game changer. 
You should have Difflam and Gelclair from your hospital. I had Caphosol as well. 

Okay il ask my team on Monday thanks so much for the advice. 
i sorted my free prescription yeah I’m just trying to get into the swing of all of this 

never had to take medication in my life before this other than paracetamol for a hangover lol 

And now I feel my life is based around medication so just taking me a little while to get my head around! I’m glad you had support from macmillian i also have started having weekly therapy threw bupa, which macmillian recommended! 
Ok thank you for the all the tips I’m finding soggy weetabix to be my favourite meal right now lol 

Okay thank you so much for recommending this I’m gonna speak to my team Monday, I wish you all the best in your recovery ️

Hey Dani thanks so much for the advice il check out your blog later really appreciate the advice.

Hi Connor, welcome to the group that none of us wanted to join, but as we are here it's good to help each other through it all. As for eating try to eat anything you can, I found porridge with full fat milk, double cream and honey, went down well, poached or scrambled eggs, anything you can eat lace it with cream or butter if you can, you need as many calories as you can get. If you are offered a feeding tube, I would advise you to have one, my RIG was a lifesaver. You are in good hands, the treatment is tough, but you will get there.If you have any questions or worries, just ask away, someone will always help if they can.

Regards Ray.