New to the group - what to expect?

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Hi everyone, I am caring for my husband at the moment who has completed 34 radiotherapy sessions and 5 chemo sessions.  His last radiotherapy is this coming Wednesday.  My concern is how quickly his has declined in the last week now not able to get out of bed and tolerate too much going into his feeding tube without being sick. I am now feeding 1 shake per hour with co-codamol ever 4.  He is in so much pain with his throat and unable to swallow at all - not even sips of water.  Can anyone advise if I should be encouraging him to get up for short periods of time and will he become even worse after his last treatment on Wednesday.  I am so worried about him declining in his mental health as well as physical. 

Also is it normal for him to have so much secretion from his throat? 

Thanks

  • Hijbu sadly everything your hubby is going through is more or less normal. If he’s only on cocodomol ask for stronger opiates I was on oramorph as well there long lasting pain relief as well. My first 2 weeks of recovery I did lots of sleeping in between feeds and oral hygenie. I was n g tube fed for the first 3 weeks then I had it removed and relied in oral ensures gradually introducing regular soft foods  . By around 6 weeks post treatment it’s often a milestone  then around the 12 week period.   It’s a marathon nit a sprint  but he will get there.
    i too had 35 radiotherapy sessions the last 5 were very hard I dragged my self ti them well hubby dragged  and drove me. Keep on top of nutrition and hydration. The time will pass there’s a good link I will send you in what happens next. 
    i found it useful to copy and give to friend s. Yes treatments finished but it’s not the end in some cases its the recovery that’s as hard as the treatment 

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
    https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

    plus a cook book with suggestions when he’s ready to face food.

    any questions  please ask .my blog below has linjs might help

    Hazelx

    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/

  • Hi Jbu

    The last couple of weeks each side of treatment end are the worse. 
    I had an NG tube in for 8 weeks and I must say I couldn’t have done without it. I was also on much stronger pain relief. I was in quite a mess before my tube went in and proper analgesia was organised. It’s amazing the difference pain relief makes to lifting the spirit too. I was on long acting morphine twice a day to cope with background pain and oral morphine every four hours alternated with paracetamol. The problem with cocodamol is that it’s not strong enough and you can give it only four times a day. 
    Let his radiographers know how much he is suffering because it’s not necessary. They can get his pain relief sorted and he should take it by the clock. 
    My feeds were making me sick too so I had a pump and was drip fed slowly through the night. That was a revelation. Ask about a pump. It may be the answer. 
    I was encouraged to take short walks which I did when my pain was controlled. 
    Sticky mucous is par for the course. Drinking helps and quite a few people found a nebuliser helped too. They are cheap enough from Amazon. A night time humidifier by the bed makes breathing easier too. 
    You have  a couple of days to sort this so make a fuss. Once he’s finished he won’t be seen for six weeks and he has a long way to go yet. 
    Stick with us. There’s lots of folk here to help. Ask away. 

    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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  • Thank you so much for this Dani - I will get onto them again about extra pain relief.  Not very forthcoming am afraid other than prescribing more co-codamol. x

  • That makes me so sad. Restricting pain relief is inhumane. As if the treatment weren’t bad enough! Lay it on thick. Best of luck. Let us know how you manage Heart️Heart️

    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