Radiotherapy after Tonsil Cancer removal and Neck Dissection Surgery

Heavens. There’s loads of advice here and a couple of blogs. 
mine at the bottom of this post and Hazel’s https://radioactiveraz.wordpress.com/

You could do worse than look at those and come back with questions as your problems arise

Simon

The problems you are going to face are mouth and throat discomfort which usually starts week three, due to radiation burns. We are all different in coping with pain but most of us end up on morphine. Your RT team will be your first port of call as you will be seeing them every day. They will liaise with your doctors and support staff to make sure you have all you need. 
You need to be very particular with oral hygiene and this can be difficult if you are in pain but it’s important. 
There are lots of emollient and anaesthetic preparations your team can prescribe. 
The skin of your neck will burn and this can be like severe sunburn or worse. 
You will lose your taste and your saliva will at first get really sticky then disappear , but it does return to some extent. 
These are just some of the things you may have to contend with. 
Not everybody gets them all. 

My advice would be to take each day as it comes and lean on your medical team.... oh, and come back here to chat about your problems. 
There are lots of survivors here. 
I am 15 months out of RT and fairly normal, well a new normal

Thanks Dani, that’s a lot to take in but very good to know..

Simon. It all creeps up on you rather than crashing down. The last day of RT will come quick enough in the end then you have 2/4 weeks while it’s still working so you will feel rubbish but not for long. 

You’ll get there

We are all just a friend request away for messages if there’s something you want to discuss quickly or privately 

Take care

ONE last thing. Stay off Google. It’s full of inaccurate and out of date information 

Hi Simon

I had the same as you and also a laser clean up operation which unfortunately didn't leave a good enough margin so then proceeded onto the 30 sessions of RadioTherapy on the left side only, no PEG, finishing just 4 weeks ago(all through lock down!). 

Cliche......you've heard it before but everybody IS different.

The list of expected side effects will probably happen it may just depend on how prepared you are and how strong and determined to get through is key.Consider everything you have been told from previous posts.

My main aim was to keep the mask fitting so to avoid the PEG,so losing weight was not an option for me.Consider every spoonful of food,make sure its loaded with calories and protein,drink lots of calorific fluids and water .Pay particular attention to this in the early weeks because by week 4 and 5 it became more difficult ,make a list of foods you can go to for a good hit and stock up on them ready.I had a freezer full of soups , Wiltshire farm foods level 6 pureed dinners(bought 6 still got 2 left over but they did me for 2 portions each), yogurts of all descriptions ,potato waffles and poached egg(favourite) ,avocados etc etc etc.My taste went overnight and early on and then its just knuckle down and consider it as fuel not food ans little and often.

Week 6 treatment ended, but week 5  to 8 consisted pretty much of pain killers and Ensure drinks .I only ever had 3 shots from my morphine and am pretty much off the co-codamol already. Warm the Ensure up and use instead of milk in anything you can think of ,use in shakes with ice cream and be prepared to sip all day long, I didn't loose weight throughout the RT. think i have since but dont own any scales-check up next week so will find out then.
Do the exercises,be regimental with oral hygiene.

I had a white board up with all the things I needed to do in the day and got the family to keep an eye on it in case I lagged behind and so I got my medication timed correctly,treat it like a job!

This is the first time I have posted on this site but have found practical advice from others on this forum useful and hope my experience can give you some energy to get through your 30 sessions .

Heather, 

Hi Simon this isn’t Hazel aka RadioactiveRaz I am now 21 month post radiotherapy for tonsil cancer with several affected lymph nodes I had 35 radiotherapy sessions and 2 chemo .like Dani says have a read of our blogs send a friend request if yiu want a one to I e onky too pleased to help .

treatment is pretty brutal but there’s enough if us in here to proof it does work .first 2 /4 weeks are pretty dire when treatment finished the radiation is still in your body and is working .

Best wishes you can do it 

Hazel x

I had my last radiotherapy first week in November ,as posts say, everybody has different side effects ,I came out pretty much unscathed apart from blisters to both sides of my tongue.The radiotherapy team gave me pain relief which helped a lot ..

Effects of the treatment lasted probably 3to 4 weeks after ,it's not pleasant but it gets better ,my taste is back to normal ,and saliva output is sufficient...

Stick with it ,it's awful,it's a necessary evil but it will get easier

Hi Simon

Sorry to hear about your condition :-( gone through same myself this year, only base tongue cancer, 10 weeks out of RT, still in pain :-(

In my case weird throat pain started right after chemo which was second day of RT starting, after week 4 i was in so much agony! Last 2 weeks were horrible, a lot, a lot of pain. Was refusing, but ended up taking morphine last week of RT and about 3 weeks after RT, every couple of hours as well.

Things I wish I knew earlier

1 - start prepping for mouth pain in advance! Get gelclair, start using that perhaps asap, rather than after RT, this stuff helped me a lot with the pain / after affects of RT, I found out about it too late though, wish I started using it a lot earlier!

2 - energy shakes - I've gone through a lot of different ones over my treatment and found the best ones to be Fortisip! don't go for neutral flavour though! after my RT finished I could barely open my mouth, couldn't swallow tea spoon of water! Most shakes made me throw up, texture was horrible etc, but not with Fortisips! Start putting weight on now if you can, start drinking energy shakes now, you will loose a lot of weight, a lot, so best to start putting some on! these shakes are awesome, saved my life, I was just drinking them through a straw affer RT as quick as possible, just to get them down, was trying about 6-7 a day, they're 200ml, drink them quick. Was not able to chew anything, anything at all

Best of luck buddy

Feel free to reach out if anything