How much does RT affect daily life?

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Hi all,

Hi all,

I’m starting six weeks of radiotherapy next Monday for SCC P16+. I’m very well aware of the side-effects to mouth and throat, and that there will be fatigue. I’m just interested to know from others who have had radiotherapy alone (eg no chemo) as to how much it affects normal daily life?
I know that for the first couple of weeks I should be fine, but I live alone and I’m wondering if after that, I’ll still be able to go out shopping, visit friends etc. I had my tonsils removed in early November as that was the primary cancer site, and the pain from the tonsillectomy rendered me pretty useless for a good couple of weeks, I’m thinking that this may be the same but over a longer period? I appreciate that everyone is different, but I just be interested to hear others experiences. Thanks in advance!

  • Hi Scorpio, it really is hard to predict how it will affect you.. but here is a thread that you might find useful on your journey.

    Helpful tips for those about to start treatment.. - Macmillan Online Community

    Loz (61)

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

  • Hi. 
    I was ok for 2 weeks. Then throat got scratchy. Team started me on cocodomol but couldn’t take that so just had paracetamol. Neck got a little red and I felt tired. 
    It all came crashing down at the end of week three on a Friday after my RT. Pain was horrid and I ate and drank nothing over the weekend. Admitted to hospital to be rehydrated and given better pain relief. This was over New Year so didn’t get NG tube for three days. Could walk round the ward and chat ok. 
    Sent home with oramorph liquid paracetamol and Fortisips to put down the tube. Bolus feeding is a pain. It takes so long so a week later I was on a pump overnight 

    Morphine was ok but made me feel sick. Nausea was a problem all the way through. 
    By week 5 I had long lasting morphine e twice daily which was a complete game changer 

    Up to then I was fairly mobile but sat in the car while husband shopped. Just took a short stroll round the garden every day. 
    At the end of the six weeks RT I was exhausted. I slept for the next two weeks. My neck was pretty red but didn’t break out. 

    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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  • and the pain from the tonsillectomy rendered me pretty useless for a good couple of weeks, I’m thinking that this may be the same but over a longer period?

    That’s what I would factor into your plan. That’s why we need morphine. The pain is rubbish. 

    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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  • Thanks Dani that’s helpful to know. I’ll certainly take whatever’s on offer for pain! Sounds like I may find it tolerable for 2-3 weeks which would be good if so. 
    Sorry to hear you had to go through so much. I’m braced for the worst but hoping for the best! 
    Bridget

  • Sorry to hear you had to go through so much. I’m braced for the worst but hoping for the best! 
    Bridget

    Hi Bridget. I was expecting it so I was prepared. We all have different ways of dealing with all this. You’ll find anecdotes from people who have toughed it out without a feeding tube and struggled through the pain to keep eating. For some that modicum of control is what keeps them sane. We are all different 

    My head believed my oncologist when he said he would cure me so I just did what I was told and took all the pain meds and tubes they threw at me. I had nothing to prove to myself. That’s not to say I didn’t have the odd meltdown. I did. But I got through and I am really well now. 

    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
  • That’s so lovely to hear, I too believe my oncologist who has told me that treatment is being administered with curative intent. In fact, over these last few weeks of waiting, I’ve hardly even thought about the fact that I have cancer, it’s the treatment that has seem to have taken over my mind!

    I’m quite a positive person, I will battle on for as long as I can but I’m not going to be a martyr, “feed me the drugs if I need them” is my motto! Thank you for your support, I will take a look at your blog as well

  • I had chemo as well but aside from short term effects it was insignificant.  My tonsillectomy pain was much worse than the RT ulcers.  That said the tonsillectomy was over and done with relatively quickly, but the RT takes a long while to heal.  With pain meds I found the ulceration tolerable enough to sleep, but no eat at the end of treatment.  That took a few weeks to get to a level where I could eat again.  Fatigue will probably be the biggest issue.  It still hits me a year after treatment when I am least expecting it!

    Peter
    See my profile for more details of my convoluted journey
  • Hi I had 2 chemo but that didn’t effect me I was lucky I had no sickness or tinnitus from that. The radiotherapy inwas   fine for first 2 weeks scratchy throat but I functioned quite well we had our grandson stay and went to allotment did gardening at home. Hubby did shopping , on the 3 rd Tuesday I went/from eating fairly well to almost a sudden stop I had my ng tube fitted shortly after which was my lifeline it enabled me to continue pottering nothing strenuous  but the worry if trying to eat swallow, meds and hydration was taken away. I took notice of my oncologist and took what pain meds I was given by end if treatment I was in co codomol and oramorph.  My neck did burn due to large lymph node being very close to surface of skin which was managed by my radiotherapy team with polymem bandages. I wouldn’t have been able to  drive once I was on opiates. As it was my husband drove me every day. If you've friends who could help with transport and shopping that would help you or if hospital arranged patient transport. 
     It’s not easy but if I can do it you can do it. 

    hugs 

    Hazel 

    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/

  • Hard to predict. I had both chemo and RT and was fine till beginning  week 5 when I was seeing the end of the tunnel and psychologically I just wanted it over. The mucus was what kept me from sleeping.   I found exercise kept me going and really helped even on days  when I didn’t want to. 

  • Thanks Peter, I would be happy if pain not as bad as tonsillectomy, but over longer period I think!