Helpful tips for those about to start treatment..

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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 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..

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..

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.. 

another very useful link..

www.ljmc.org/.../pi25_radiotherapy_short_course_hn.pdf

  • Always someone coming up with some new ideas for helping us cope with the challenges ...this forum is invaluable...and a source of comfort.

    Peter 

  • 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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • I think this is a brilliant post. I was wondering about creating a post with eating after RT and what to expect. 

  • Go for it. Bookmark it and bump it up occasionally 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Eating is a massive thing for us, so many different things crop up during and post treatment....we are all hit with taste and appetite issues... some more than others....a dedicated post would work well.

    Peter 

  • 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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Go for it. Bookmark it and bump it up occasionally 

    yep, do it.. Clap

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • a quick 'bump', as I've added No.9.. Thanks Dani.. Thumbsup

    Loz (61)

    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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • yes, I read it yesterday.. and added at the bottom.. Thumbsup

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..