Fatigue post treatment and pain getting worse

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hello - I’m writing for my mum.

she finished intensive radiotherapy for stage three cancer which was around her tonsils 5 weeks ago.

the fatigue and pain just seem to be getting worse every week and she feels very low.

she can talk again - so that’s great -and can have a little custard each day but otherwise reliant on peg tube.

she wants to know it will get better.


personally I’m worried because she had chronic fatigue in the past and sometimes it’s seems radiotherapy can trigger this.

any advice or encouragement or timelines for progress would be much appreciated 

she’s in her 50s if that makes a difference

Just editing for clarification - she's still on Oxycontin. She so fatigued she needs to spend all of time in bed/on the sofa. She still needs help, washing dressing and getting up and down stairs - can't cook or anything like that. I think struggling because the world feels so small too.

  • Hi 

    I finished treatment a week ago - fatigue has increased a lot since finishing but although I cannot help your enquiry  I just wanted to extend my sympathy as another lady in her early 50s x 

  • Hi Daughter of C, welcome to the group. Yes, RT does cause chronic fatigue, and sometimes it can last for a good while, your mum is still in early days of recovery yet, and her body still has a lot of healing to do, so she needs to rest when she can. It's good that she has a PEG, don't worry too much about her eating just yet, however if she can, just try soft foods, as you are doing, they may need to up her pain medication up a bit, for the pain. Unfortunately, there is no progress timeline, we all take different times to recover, some longer than others, she will get there. Stick with us, ask any questions you have, someone will always answer if they can.

    Ray. 

  • she finished intensive radiotherapy for stage three cancer which was around her tonsils 5 weeks ago.

    the fatigue and pain just seem to be getting worse every week and she feels very low.

    This is normal. She is very early in her recovery. I was still on morphine at 12 weeks and your mum is only 5. You need to be thinking in terms of months, not weeks. It was six months before I felt anywhere near my "new normal" and a year before I was happy with the way I was

    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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  • Hello there, I am sharing your pain at the moment. My husband finished his treatment 11wks ago, he's still very tired and fatigue,so 5wks is still very early,side effects after this treatment can become worse ,or so we have been told,and they can vary depending from patient to patient,but I would say take day a the time,don't expect miracles,my husband is still having most of his food through his PEG,swallowing for him is still very painful and his speech is coming along slowly. Wether age makes a different, I am not sure,also we got told at the beginning, with my husband fit and healthy that could help during this challenging time and challenging they are. So stay strong and be patience. Lots of hugs. Mel x

  • hello - I’m writing for my mum.

    Also...have a read of THIS ARTICLE about recovering from cancer treatment. There is a huge psychological impact as well as a physical one. It is very hard to explain to others, even friends and family how, after treatment finishes, you really aren't "better"

    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
  • Hi it’s not unusual I had radiotherapy fatigue. You can’t fight it listen to your body. I became  the queen of the 20 minute power nap several time a day if needed. Top tip go to bed tell her not on sofa I got into bed fully clothed. It got to be a joke if we went to friends  they would offer me their spare room instead of a cuppa when we got there. 
    gentle exercise helps I used to walk every day starting with to nearest lamppost then each day a little further. It does get better sufficient nutrition and hydration as well. I aimed for 2500 calories and 2-3 litres of water every day for 15 months by any way I could. Fortified food added double cream soft cheeses eggs. Protein is vital as well 

    read article Dani had put on print off give to friends and family. Yes treatment finished but recovery just beginning. 
    hugs 

    Hazel. X

    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/

  • Good evening Daughter of C, well done to your mum in finishing the treatment, im afraid these are the side effects of the treatment, as a guide the recommendation is three months when things start to settle down. Sometimes it can a bit of depression setting in especially when we are confined to the house and don't have the energy to do anything, i went through this stage when i wanted to do things but my body would not allow me so i just rested until my body was well enough to cope, i even went to see a councilor and my GP put me on antidepressants they both helped me through this difficult time. Wishing you and your mum all the best, take care.

                                                          Chris x 

    Its sometimes not easy but its worth it ! 

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