Advice! Tonsil cancer HPV 16 +

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Hi everyone,

My dad was diagnosed with SCC tonsil cancer in October 2023 and was operated on in November 2023 having a tonsillectomy, neck dissection. He had 5 chemo sessions and 30 radio sessions. Unfortunately before the last session of chemo he had neutropenic sepsis. We are 7 weeks post treatment (8 weeks this week) and he began slowly eating again and has been doing so and was doing really well and even had a good English breakfast! The last few days he has felt tired, not really an appetite and not really wanting to do anything and he feels down because he started off really well and feels now he isn’t. Prior a few days before this, he does some jobs such as tree cutting and plastering. Is it normal to start to recover and then have a dip? Because he is feeling a bit down. Any feedback/advice would be appreciated to give him a boost :)

  • Hi yes perfectly normal. Especially if he’s been over doing it. Cancer treatment is pretty brutal and radiation fatigue can  hit you at anytime in recovery. Only way to accept it listen to his body I became the queen of 20 min power naps I learnt if you  try fight fatigue it myself like hitting the wall in a marathon. We all have 2 steps forward 1 step back days or weeks  Ready this it might help   No appetite is is 

    normal I took the attitude food is fuel and even though I didn’t want to eat I made sure I had 2500 most days I found smaller meals 6 times a day helped  think calories add cream peanut butter eggs e cheese ti meals  smoothies yiu csn soon bulk up with the above  protein is vital to recovery  

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
    Hazel x 

    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  

  • Thank you for your quick response! Hopefully dad will listen and take it easy (fingers crossed) Fingers crossed

  • Hi abs2809 An English breakfast! it was about a year before I could have a very small one. He seems to be doing very well, so soon after his treatment. He is still early in his recovery, it takes a good long while back to good health, with many ups and downs on the way. The fatigue can come on at any time, and it knocks you off your feet, and all you can do is rest, he must listen to his body. He will get there, it just takes time, he has a lot of healing to do.

    Ray

  • Perfectly normal... it was a surprise/disappointment to me that I was doing so well during post treatment and then had a set back at around Week 5. I thought something was seriously wrong. Instead, what I have come to learn is that this process is a slow one and there can be periods of progress followed by dips. You'll hear on here that it is a marathon not a sprint and this is so true.

  • Hi.  I am at 10 weeks post treatment and what you describe is exactly what I am going through.  Last week I drove our MoHo to the coast, walked miles on the beach with the dog and climbed back up the hill each day.  I also ate well.  This week my body has told me that I did too much and I need to rest and eat less solid foods.  It needs to recover!

    I am afraid this is par for the course.  Some good steps forward and the occasional one back.

    Peter
    See my profile for more details of my convoluted journey
  • Good evening  abs2809, it could be a combination of doing too much to soon, and maybe he is reflecting on what he has been through and feeling a bit depressed, sometimes we recover well yet the body is still catching up. He needs to slow down let everything settle down and get plenty of rest, It is quite normal what he is going through but if it continues then contact his Dr , I'm sure he will bounce back it is a case of taking one step forward and two steps back. Tell him he has done so well to get to this stage , we all go through this stage during recovery. Wishing you both all the best. Take care.

                                                                                         Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Thank you for your advice! We just keep reminding him that this is normal and things will not change overnight x

  • Sometimes he finds it so hard to understand things take time as he is so eager to always do things! Thank you for your advice. He’s feeling a lot better and we’ve definitely noticed since i posted this. Thank you

  • I love that “it is a marathon and not a sprint” this will be our new thing to say if he feels down or just needs a boost. Thank you for your advice 

  • Hi! Thank you for replying and your advice. It definitely is about listening to your body and letting things be