off the top of my head..
1) get a fluoride varnish before your treatment starts
2) accept your feeding tube.. you have no idea how severe your symptoms will be during treatment, so please get it done.
3) get on top of your oral hygiene.. use SLS fee toothpaste (Oranurse) and a baby soft toothbrush during treatment, your mouth/gums may get very sore.. use your mouthwash, etc religiously.. cleaning teeth is also a good time to practice mouth/jaw exercises, so make sure you do them
4) moisturise, moisturise, moisturise..
5) keep your team informed about how you are coping, and don’t suffer in silence.. make sure you have adequate pain relief.. especially at weekends
7) when on opioids make sure you take enough laxatives to avoid constipation.. this is something to take very seriously
8) first sign that you are struggling with eating, ask about overnight pump feeds, if you can continue to eat, even a little, then fine, otherwise just concentrate on drinking to keep your throat working, just make sure you get those calories in..and keep hydrated (CatSW9)
9) When you begin treatment everything will seem extremely daunting, so take a moment to create a ‘timetable’ of things to do, for instance:
a)Lansoprazole
b)clean teeth/jaw exercises
c)wash/moisturise
d)30 mins
e)eat, etc,etc,etc..
You’ll eventually find your ‘new’ routine, and it won’t seem so daunting..
10) Thanks Dani for this very important reminder..
AFTER TREATMENT
During treatment you are given exercises to do to keep your swallowing muscles healthy (important if you are tube fed) and exercises to prevent trismus (your jaw tightening up due to scarring from the radiotherapy)
THESE ARE FOR LIFE
Fibrosis is progressive and can hit you years after treatment end. I have been doing mine once or twice a day for years and my mouth opening is normal and despite losing a lot of muscle at the back of my tongue I can swallow well.
COMING OFF PAIN MEDS
Ask your team how to structure a tapered withdrawal from your analgesia.The longer you have been taking opioids the longer the taper
We don’t get addicted to opiates but our bodies get used to them so sudden withdrawal is really really uncomfortable for a few days and can be dangerous. Symptoms of flu, shivering, shaking, diarrhoea constipation and vomiting.
We don't seem to be warned about this and reduction of pain relief always seems to come between reviews so maybe it’s time we asked as soon as analgesia is offered.
I suffered withdrawal symptoms myself and it is not fun!
11) Post treatment could also present its own mental and physical challenges.. here is a very helpful read that might help you come to terms with Life after Treatment
And remember, recovery after treatment is an extremely long and slow process.. it will take time for your body to heal and for you to feel better, so don't beat yourself up.. you've been battling cancer, not getting over the sniffles..
I hope this helps you a little, but just ask questions if there's anything you need help on.. there will always be someone able to offer help and advice..
......
some more very useful links..
www.ljmc.org/.../pi25_radiotherapy_short_course_hn.pdf
Mouth problems and cancer treatments | Macmillan Cancer Support
I hope this helps you a little,
It sure does. I hope folk add to it. I’ve bookmarked it so I can signpost others
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Go for it. Bookmark it and bump it up occasionally
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
3) get on top of your oral hygiene.. use SLS fee toothpaste (Oranurse) and a baby soft toothbrush during treatment, your mouth/gums may get very sore.. use your mouthwash, etc religiously.. cleaning teeth is also a good time to practice mouth exercises, so make sure you do them
I used a water pick for a while. On a gentle setting it was quite soothing.
5) keep your team informed about how you are coping, and don’t suffer in silence.. make sure you have adequate pain relief.. especially at weekends
The radiographers carrying out your daily RT are your conduit to the rest of the team. They are good at recognising what you need so tell them. Most things can be got into place the very next day if you do.
8) first sign that you are struggling with eating, ask about overnight pump feeds, if you can continue to eat, even a little, then fine, otherwise just concentrate on drinking to keep your throat working, just make sure you get those calories in..
You can feed through the day too, carrying your food in a little rucksack, but I preferred feeding at night and managed even with an NG, sleeping propped up.
I'll add that the list of things you have to do through the day with mouthwashes, meds and feed are overwhelming. Make a list of what needs doing when and tick it off through the day. Clever folk use spreadsheets. I had a hand written one pinned to the kitchen wall.
Take your pain relief by the clock, not just when you think you need it. Keeping ahead of the pain controls it best
Finally....come on here to share, ask questions, moan, rant .....whatever. There is always somebody not far away
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Go for it. Bookmark it and bump it up occasionally
yep, do it.. 
Loz (62)
Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..
a quick 'bump', as I've added No.9.. Thanks Dani.. 
Loz (62)
Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..
Mount Vernon has a useful piece on what happens when you have radiotherapy
https://www.ljmc.org/pi_series/pi25_radiotherapy_short_course_hn.pdf
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
yes, I read it yesterday.. and added at the bottom..
Loz (62)
Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..
