Half way through radiotherapy and struggling

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Hi all, I had a rare tumour removed from my maxillary sinus and I’m half way through radiotherapy. I’m really struggling with just getting out of bed as I am so tired, my mouth is sore and I can’t taste anything. I can find no pleasure in anything. I have 13 sessions of 30 to go. Truthfully, how long can I expect to feel like this ? 

  • Hi kerryjp. Sorry you're feeling this bad. My personal experience is that I felt just as rubbish as you till about a month after treatment end. 

    Have you got your pain under control? When I did it was a revelation. I felt much more comfortable. Radiotherapy does make you incredibly tired. I was advised to make an effort so I made a point of getting out into the fresh air every day with the dog, sometimes it was a slow plod round the garden but I did find that if I managed to get out I felt better for it.

    Forget about taste for a while. By the middle of week 4 all my food and meds were going down my nasogastric tube as my mouth was so sore but again the background pain was well controlled

    It's a question of putting your head down and getting on with it taking one day at a time. You're over half way...keep going

    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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  • Hi As Dani says a good month ti 6 weeks is to be expected the treatment is pretty brutal and recovery can be longish. Your pain relief might need increasing ? I was in 8 x30 mg co codomol and 40 mi of oramorph. I used to walk every day sone days 100 yards some days just the garden gradually I built walking up but it’s important to get out. 
    As for taste if you csn still eat try to think food is fuel it gave me no pleasure for a good 6 month it was eat to live scenario. 
    hugs Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • I felt much better a month or so after finishing chemoradiotherapy. Hang in there, one day at a time,  it's tough but worth it. Sending love

    Catriona

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story

  • Hi Kerry

    Good advice from the others.

    Unfortunately you have hit the dreaded half way mark and I think it hits most of us just like it is hitting you. It is the hardest time but hold in there and push on as it is worth it in the end. I felt like giving up on week 4 and I spoke to my radiotherapy doctor and said I was thinking of packing it in. He immediately upped my pain relief and it made such a difference. Not saying that it was easy but it helped me get through those last few weeks of radiotherapy. He also said that if I did give up that it would have been 4 weeks wasted for no effect. I thought then that I didn’t want to have gone through all that for no result so had to grit my teeth and get on with it.

    Start the count down as you are half way through and not much farther to go.

    Lyn

    Sophie66

  • Thank you that’s so helpful x

  • Thank you for the encouragement x

  • I’ll speak to my nurse tomorrow about my pain relief x

  • Thank you for the support - feeling a bit more positive x

  • Hi Kerry

    As others have said Radiotherapy is difficult and the side effects are terrible but hang in there we have all got through it. In my case the taste only started to return slowly after about 10 months I was like you no pleasure in anything I couldn't even make decisions and didn't care about anything IT WILL GET BETTER I am a different person now My McMillan nurse insisted I take an anti depressant 

    Tell all the medical staff how you feel don't try to be brave (there are no medals) 13 sessions to go just think you have that bell to ring in sight

    Chin up

    Ivan