Supporting partner

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Hello, I'm new here. 

My partner was diagnosed with tonsil cancer which has spread to his tongue and lymph glands in his neck in July this year. It is HPV16+  He is in the process of undergoing 6 gruelling weeks of radiotherapy. He has just passed the halfway mark...yippee! He had a RIG inserted 2  weeks ago which he's having a few issues with as uncomfortable around the area it goes into his stomach and sore there. He's losing weight each week as he's struggling to eat due to a mouth full of ulcers, inflamed throat, everything tastes of metal and a complete lack of appetite! I'm really struggling with trying to encourage him to either eat and drink the protein drinks he's been supplied with which I know have the texture of mucus! I'm so worried about his weight loss and the mask not fitting as I know that's important whilst he's having radiotherapy but also for his on going health its important to keep his weight up. Any ideas or tips as to what to suggest eating. What he is eating is miniscule in terms of actual food, bit of porridge, yoghurt, sift tinned fruit, small bit of scrambled egg.  He's not doing the mouth exercises he was given as it hurts but was told to at least try to keep up with eating something which will help. I know it's horrible what he's going through and I hate seeing him like this but I feel helpless and overwhelmed.  Sorry to have rambled on..

  • Hi Other half, eating does become difficult during and after treatment. Has he started to use the RIG yet? If not, you need to ask his team about overnight feeding via the RIG, that will give him the nourishment he needs and take the worry about not eating and losing weight away, he can put water through it also to keep himself hydrated, which is also important. I was 100% reliant on my RIG for about 10 weeks, they are a lifesaver. You haven't rambled on at all, we know how it is, and here to help whenever you need it, just ask any questions you have, and as many has you want. Bear in mind this treatment does give very high cure rates.

    Ray. 

  • Hi Ray 

    Thank you so much for your reply.  I rather rambled on last night but it was one of my moments of feeling low. Yes he has been using the RIG and he's meant to have 4 a day.  Sometimes he tries drinking one or two and the others he puts through the RIG. In the last few days he's felt quite sick whilst having them which I'm not sure is normal? The RIG is still oozing a bit around the tube where it comes out of the stomach. Not sure if that's normal too? He's just completely lost his appetite and desire to eat. Feels pretty fatigued alot which I guess is normal. I can ask about night time feeding tomorrow when we go to the hospital. Did you do the swallow exercises? 

  • Just try to keep the RIG nice and clean where it goes in, a little oozing is normal for a while as it heals, you could ask his team to have a look at it. The overnight feeding will help a lot, always keep the team informed on any worries you have. I did try to do the swallowing exercises, but when it so painful to swallow it's difficult.

    Ray.

  • Yes I've been cleaning it for him. I will definitely ask about overnight pump. I guess my worry is that he'll be unable to swallow after treatment finishes if he doesn't either do his exercise and or swallow food or drinks normally. Thank you so much for your replies. I'm so grateful to have found this forum.  

  • I guess my worry is that he'll be unable to swallow after treatment finishes if he doesn't either do his exercise and or swallow food or drinks normally.

    Hi  

    Dont worry about that. The muscles don’t forget how to work if they aren’t used for a few weeks. I don’t know why the dieticians try to put the fear of God into to us over this. Nothing went down my throat for 8 weeks and exercises were done very infrequently till my NG came out. I still do them five years later though. 
    I pump fed overnight. It was liberating! I could spend the day trying to keep cheerful, feeling sorry for myself, or just reading; Anything but feeding. 

    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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  • Thank you Dani for your reply. That's very reassuring to hear. Its all very scary but it's lovely to read everyone's positive stories.  

  • Give your partner a hug from us all here. This is doable. And look after yourself too. 

    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 Other half

    T2N1M0 tonsil  cancer HPV16+  Chemoradio finished June 2023....treatment is a tough  gig

    I had similar problems lost 16 kgs from week 3 of treatment and ended up in hospital for 12 days to stabilize my weight, luckily the mask still fitted  so no probs there. While in hospital medics changed my PEG intake from Ensure 2cal to Jevity feed which made a massive difference, weight stabilised and home I went.

    Overnight tube feeding also made a massive difference, gave me more freedom during the daytime. I progressed to solid meals August 2023, small portions to start with, mainly minced beef and mash + whole milk to drink (supplemented with Ensure 2cal orally) developed a liking for Guinness 0.0, could taste it  and it provided some extra calories.

    PEG came out in September, in October/November my BMI was good, started swimming again, played a little golf and had a break in the Canaries, things do improve but it takes time, we all stumble a some point but soon pick ourselves up and carry on.

    Take care

    Peter

  • Thank you Peter, that's really reassuring to hear. We are seeing his consultant tomorrow so will mention about a night feeding tube. He's been having Fresubin which he's meant to have 4 a day but he finds at the moment it is quite filling and can't manage anything else. I'm guessing his stomach has shrunk somewhat! Take care and many thanks. 

    Susan 

  • Hi and welcome,

    So may of us have the T-shirt, but will ahve good advice.  Try to keep eating something so the swallow function persists, but at the same time don't be afraid to use the RIG for meds, hydration and feeding.  It will give him the boost he needs.  it is not just during treatment that nutrition is important.  Post treatment our bodies need everything we can throw at them to help us heal so expect to be using the RIG for a few weeks before eating becomes easier.

    Stay with us for help as he progresses through treatment and recovery.

    Peter
    See my profile for more details of my convoluted journey