RIG too painful, RT now in full force

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Hi did anyone have issues with the RIG fitting? Admitted into hospital today but I had to stop the procedure as it was too painful. I'm usually very strong so thus was bit of a shock as well as disappointing in myself. 

I've come so far after surgery to just go backwards now on radiotherapy week 3 I'm in excruciating pain. Ulcers sores everywhere in my mouth all tgf mouthwashes not doing much. Only on cocodamol but think need to be on something stronger. 

Really wanted to avoid NG but it might be my only option in a week or so. Many on here survived without? Already having problems eating foods as mouth painful now  throat very sore. Really strugglinSleepySleepy 

  • Hi my trust  didn’t fit rigs or pegs in most cases , but I did consent to a ng tube if I needed it. By the end if week 3 I did need it and to  be honest it was a lifesaver. I found it took all the pressure off I could feed put my medication and all hydration through it. There s no point in struggling as if yiure in pain now it will not get any easier. I credit my ng tube that it made my recovery uneventful and i could take it out by week 3 of recovery as I could sustain myself orally drinking the ensures. As for pain medication I was in 30 mg co codomol and oramorph  by start of week 4. Please do not  try to brave it out thebtreatments brutal for a reason it’s killing cancer in yiur mouth/throat. So my advise go for the ng tube. I had a rucksack and I found it easier to feed during day many feed during the night. Find what suits your lifestyle. 
    hugs Hazel  

    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  

  • Hi x I had a PEG. First attempt - the procedure failed (and something went wrong with the sedation so I felt the whole thing). The second attempt was a week before I started treatment and was fine. I was one of the lucky ones and was able to maintain eating throughout my treatment though did go down to soups and shakes in the final week/s. Despite that, I’d always recommend having the tube as things change very quickly and for so many it was a life saver. They did say that if PEG fitting failed on the second attempt, I’d have been given an NG tube if/when the need arose.

  • I've come so far after surgery to just go backwards now on radiotherapy week 3 I'm in excruciating pain. Ulcers sores everywhere in my mouth all tgf mouthwashes not doing much. Only on cocodamol but think need to be on something stronger. 

    Don’t be worried about an NG. It’s a doddle. I managed pretty well with one and fed by pump overnight. Bolus feeding yourself with a syringe is so time consuming there’s little left to do anything else. When I got mine placed I got put on oramorph and long acting morphine twice daily which was a game changer. 
    It beats me why any trust would possibly delay peg/rig feeding placement  till treatment was well underway. 

    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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  • Thankyou all. I've today got my hands on oramorph only just started taking it so need to see what dosage works best for me. I'm preying this helps me as the pain is no longer tolerable. I'm also taking Paracetamol. 

    I know thought it was late fitting the RIG as I was in a great deal of pain anyway on week 3 and wasn't offered any meds/sedation other than local anaesthetic. Anyway I couldn't do it sadly. 

    I know i will need the NG just didn't want as visible but I've got baby who I know will pull it but it's not forever and if its going to keep my calories up when can't swallow then so be it. 

  • Can I also ask what dosage everyone was on oramorphe? I started on 2.5ml now on 5ml (10mg) every 4 hours but I'm still in pain. As I've only just started don't want to increase too quick. Dr adv start low then increase. Just curious what will be an adequate dose. 

  • I was on 10mg every four hours. You can take more but I found that adding long acting morphine twice a day enabled me to keep the dose of oramorph low. It really made a huge difference, it was astounding. I had 20mg of morning and evening. It took care of the background pain so that the oramorph was dealing only with breakthrough pain. Don't forget you absolutely MUST take a laxative if you are on opiates. I took a sachet of laxido twice a day. A similar prep is Movicol. You should have these on prescription 

    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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  • PS. Don’t underestimate the power of good old paracetamol. I had liquid paracetamol every four hours alternating with the oramorph 

    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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  • Hi by end of week 3 I was on 2x30 mg co codomol  every 6  hours with oramorph in between. Uo ti 40 mil in a 24 hour period. Interspersed with sips inbetween if I needed it. 

    Do not forget laxido sas yiu will become constipated and yih really don’t want that. 

    Hazel 

    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  

  • Don’t underestimate the power of good old paracetamol.

    I had to stop taking it due to getting a terribly itchy back, kept me awake at night.

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • I had to stop taking it due to getting a terribly itchy back, kept me awake at night.

    Really? I’ve never heard of that! Thanks. Something else to consider about the plethora of drugs we take and the side effects of treatment 

    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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