Advice to someone about to start treatment

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What to expect ? What to ask for? Helpful tips ? How long can you work, drive, function? 

  • It will vary tremendously for the type of treatment you are needing to undergo.

    Eg I had a tongue partial glossectomy in day surgery and was off work for a month, and have just gone back on a phased return.

  • Hi  

    where is your cancer and what treatment are you having? 
    I can give you myself for one example 

    I had six weeks radiotherapy for a tumour at the back of my tongue in the lingual tonsils  

    There want much to report for two weeks but by week four I couldn’t swallow anything because of  ulcers in my mouth. I was tube fed largely for 8 weeks 

    Some people do better than that, some worse  

    The pain is a challenge but is mitigated by proper analgesia  

    Recovery is a long slow process, a marathon not a sprint 

    A fair generalisation is that six weeks after treatment end we feel a bit better and by twelve weeks we turn a real corner. 
    Allow 6 months before you get back to work on a phased basis. Earlier if you have a desk job, later if it’s a physical one. 
    Taste changes can be profound but more like they used to be by a year  

    Hope some of that helps 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • More info and we can definitely help. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi If you feel able to tell us a bit more about your cancer and treatment we can try ti give more info. Eg chemo snd radiotherapy was my treatment it’s pretty brutal band recovery snd be long. I liken it to  more a marathon then a sprint. If it’s surgery  only your  recovery can be quicker. 
    Dani has given a good timetable of what you  can expect if radiotherapy is your path. 


    Hazel

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Sheepfarmer

    T2N1M0 tonsil cancer.... diagnosed February 2023.... finished chemoradio June 2023

    Treatment for tonsil cancer was pretty tough.... two and a half weeks with no real problems.... then my mouth and throat became very ulcerated.... struggle to get any liquid in....PEG tube had been put in place pre treatment... life saver.... but still spent 12 days in hospital stabilising my weight....morphine usage meant that my wife did all of the driving for a few weeks....

    What type of cancer has been diagnosed ?

    Patients will have different treatment plans and not all will have the same issues.

    Fortunately I have retired from work....

    Could have managed desk job or light duties 4 months after finishing treatment.

    Best of luck

    Peter 

  • Hello Sheep Farmer, so far the support and responses that I have had from this group have been amazing. If you provide them with more details then they will give you all the answers you need.

    Are you an actual Sheep Farmer? Won't be long until those lambs are keeping you busy. Sheep

  • Thank you all for the  advice. Base of tongue , tonsil and I lymph node. Starting radiotherapy on 26 th . Very grateful for any advice on pain relief - when needed and what. Side effects of morphine . Alternatives etc I am a sheep farmer - coming up to lambing end of April plus dogs, horses and livestock .when am I likely to need help after I start treatment ? Helpers on standby . Can you drive throughout  treatment? . 1 1/2 hrs drive to hospital ew Told I must have PEG . How easy to cope with? How painful to put in? I am a whimp! Grateful for info and optimism if possible! 

  • I’ll try to take every point but it will be a generalisation. 
    Your team should give you morphine when it’s needed. I had morphine every 4 hours with paracetamol in between. Morphine is constipating so you have to take laxatives. You’ll be supplied with those. 
    Take analgesia by the clock in front of the pain. It works better. 
    Nothing much will happen for the first two weeks and you should be able to drive yourself till then. After that it starts sliding away from you and by the end of 4 weeks you’re likely to be on morphine for a good six weeks. 
    I didn’t have a PEG I had an NG tube but others report that it’s uncomfortable to put in but you’ll be sedated. They take a couple of weeks to settle down. You’ll be shown how to manage it. It’s easy. 
    When you can’t eat it will save your life. 
    Thus cancer responds very well to radiotherapy and cure rates are in excess of 90%. 
    Treament is a real challenge but worth it. 

    I doubt you’ll be back to a physical job for six months after treatment end. 
    So glad you have some help. You need to concentrate on getting better. 
    Best of luck 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi Sheepfarmer

    T2N1M0  tonsil Cancer HPV+ ....Diagnosed Feb 2023....finished CRT June 2024

    2 and 1/2 to 3 weeks into treatment and things took a turn for the worse for me ....mouth and throat badly ulcerated ....lost a couple of stones+ due to inability to eat....ended up in hospital for 12 days....PEG was a lifesaver....not that painful to go in ....muscle pain in area for a week after....daily PEG hygiene is important.

    My wife had to do most of the driving while I was on morphine....Oramorph and slow release morphine....do not put up with pain....use meds....Macmillan nurse will advise.....laxatives are imperative...morphine bungs you up bigtime....Laxido works well.

     Tough treatment....but Shepherds are as tough as they come....you will manage fine.

    Recovery?  Been to Canaries in Oct/Nov.....Just booked to go again in April.....not 100% but getting there

    best of luck

    Peter

  • Hi Dani has covered all the points. I’ll just add keep  off Dr Google stick with us on here all happy to help. 
    glad you’ve got people on standby. 
    If you’re having chemo just check if weekly or like mine  every 3 weeks if every 3 weeks it’s a full day away you may need help on those days driving. Personally  I know I couldn’t have driven my hubby did all that. 
    We’re all wimps but we did it so can you. One day at a time. 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help