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Tiredness after head/neck radiotherapy

Cathodejohn
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I have a more or less permanent tiredness and fatigue problem. I had 6weeks of daily radiotherapy for tonsil/tongue cancer which finished end October 2024. Whereas the outcome  was 100% clear I have been left with neck Lymphodema , breathing/swallowing/taste problems. I also have sleeping problems insofar as I can readily go to sleep at about 21.30/22.00 but will always wake up about 3 hours later and that will be it! I wake up breathless and tend to drastically overthink things in my mind which is at times scary. 

  • Hello Cathodejohn

    I'm sorry to hear that you've been struggling with extreme tiredness since completing radiotherapy at the end of last year. It sounds like it's having a huge impact on your daily life and I can understand that you want to try and improve things. 

    We have some information about tiredness with cancer that may be helpful but I'd really encourage you to reach out to your clinical nurse specialist and GP for advice and support regarding the symptoms you've mentioned. It's also worth seeing if there are any support organisations such as Maggie's in your local area where you can access support. 

    You're also welcome to call our nurses. I know they will be happy to listen and offer any advice, information and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040 (excluding bank holidays). 

    I hope that you can access the support you need to improve things. Keep in touch Cathodejohn, we're here for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline

    Hi John

    I had radiotherapy for 20 sessions  to my head jaw neck and mouth after having a radical neck dissection to remove parotid gland and lymphs due to matastatic SCC. That was 10 years ago. I had all the symptoms you mention. Your taste will come back 90% after 2 years. The lymphodema will also resolve itself but needs daily input from you doing neck stretching excercises which the hospital should have given you to do. Ditto swallowing excercises where you hold your tongue between your teeth and do a hard swallow with a sip of water. Also throat singing excercises. The radiotherapy causes the muscles to lose their elasticity and need to be constantly stretched to counteract this. I also have breathing problems and fatigue which Im told the radiotherapy should not cause.Your sleep pattern follows mine bed at 10 awake at 3am with a head full of negative thoughts.. I think this is a psychlogical side effect like PTSD after the horrific treatment which is neck radiotherapy. Ive had a relapse now metastisis to bones and lung so different set of probllems to contend with. I hope you are able to overcome your problems and continue a fairly normal enjoyable life.

    Ed

  • Offline in reply to Farmer_Ed

    Thanks Ed

    Your.comments are very reassuring for me. This is the second time round for me as I had non Hodgkin’s lymphoma in 2006 ! I am a very positive 82 year old man who accepts that I have a few more years left in me at best but would like some quality of life for that period!

    Good luck with your treatment 

    John

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