RIG on last day?

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Hi, 

I asked the question before about people who hadn’t had feeding tubes. As some of you might remember, I couldn’t tolerate the nasal tube and asked for stomach one. I had a phone call booking me in for a RIG op on my final day of treatment which is next Friday 29th. If I’m honest, I’d been counting down the days and the thought of then having it fitted and an over night stay isn’t appealing on a day I thought I’d be relieved. I’ve gone thus far without and knowing I have to keep it in for 12 weeks after isn’t ideal either. I’m not eating enough (about 1000/1200 Cals per day) but except for the throat pain I’m fairly well in myself- went out for short walk yesterday and for lunch with my husband (well, watched him eat I mean!) and am surviving on paracetamol. I do have the oromorph ready for final week when it is likely to get worse. What I’m keen to know is, are weeks 7 and 8 a lot worse or will I find everything plateaus? I’m under no illusion that they will be easy but I’m wondering how much worse and whether it will mean the RIG fitting in my last day of treatment is a worthwhile one. I have a young family and at least those weeks the kids will be back at school. I appreciate it will vary from person to person but I would like to feel better informed before I make my decision. 
many thanks in advance 

Clare x

  • With me I crashed into a huge wall in week 4 and stayed there. I don’t think the pain got any worse but I was so so tired at the end and slept most of the two weeks after treatment. Just knackered and felt defeated but I am older than you Clare at 71 now and likely less resilient. 

    Dani 

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

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

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  • Thanks Dani, that’s helpful to know. X

  • If you want my honest opinion. If I was you I’d up the Fortisips or ensures and forget the RIG 

    Dani 

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

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

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  • Thank you. I think that’s what I wanted someone with experience to say xx

  • I agree with Dani.  I went through radiotherapy without a feeding tube.  At the stage you are now I didn't seem to get any worse - just plateaud.

    Linda x

  • Hi Clare. I had n g tube in end of week 3 and took it out myself end if wek 3 recovery. I turned ensures ) a day orally. We were flying to spain  week 8 so I had something to aim for. personally wouldn't have  had rig on last day if treatment. If you’re managing  orally on meds stick with it 
    but  try upping calories with drinks I was orally forcing myself to drink 6  a day which have me 1800 calories.I treated each ine like a bush tucker trial stood uo in from if kitchen window fixed eyes on a focal point and went for it!! 

    Hazel x

    Hazel aka RadioactiveRaz 35 radiotherapy and 2 chemo  3 rd cancelled. HPV tonsil cancer 7 lymph nodes. 8 years post treatment living a great life. 
    No questions too daft to ask. 

    I’m also an ambassador for https://oraclehnc.org.uk/
    A leading head and neck cancer charity. 

    This is a link to a webinar i did with Oracle explaining the process of diagnosis. 

  • Thank you so much. I just couldn’t get my head round it. Have made up my mind x

  • Thank you Hazel. Im going for it without in that case x

  • Good afternoon Clare, i think its a bit late now to have a PEG fitted as its normally done at the beginning of treatment or surgery, you seemed to have managed so far, as long as you feel confident and happy with how its all progressing then i cannot see any problems. Wishing you all the best,take care.

                                                                         Chris x

    Its sometimes not easy but its worth it ! 

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  • Go for it Clare. I’m sure you’ll be fine. Xx

    Dani 

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

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

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