PEG

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  1. Hi everyone.

Morning. How are you all feeling?

I'm a little overwhelmed this morning!!

Had a meeting on Monday with my mcmillan nurse,  dietitian and speech and language therapist,  they are all so lovely. They explained things and really put me at ease, don't get me wrong I'm absolutely petrified of the PEG being fitted.

So on Friday i am having 6 teeth removed, so gonna feel pretty rough over the weekend, and on Tuesday I'm having my PEG fitted, really not looking forward to that, but understand why , as i may need it later on down the line.

Sending positive vibes to you all on our journey. 

Lots of love 

  • Hi Zakaroo

    So sorry about the teeth but if they aren't healthy they will cause you no end of trouble after your RT

    I didn't have a PEG, I had a nasogastric tube so I can't comment on how it felt but I know the procedure is all done under heavy sedation so you won't feel a thing. 

    Hang on in there

    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 for the reassurance,  they did say i wouldn't feel a thing and that  won't remember anything about the procedure 

    X

  • Hi Zakaroo I did'nt have a PEG fitted I had a  RIG, they are both very much the same I think, as far as the fitting goes, you will be sedated and not feel a thing. You will get used to it after a couple of days, they will show you how to use it and how to clean and flush it out. I think it's always best to have one if offered, even if you don't need it, it is there incase you do, lots of people on here have had one and got along fine with them, so don't worry about it. All the best.

    Regards Ray.

  • Zakaroo, don't stress too much over the PEG fitting; I've had it done twice and, some brief discomfort aside, it's not painful at all.

    But, the area can become very painful over the following few days, so take all pain relief on offer. First time around I made the mistake of going to bed the second night after it'd been fitted without taking anything because it wasn't hurting; woke up the early hours in all sorts of agony, don't make the same mistake!

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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.

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  • Good evening Zakaroo, please try not to stress over having the PEG fitted as MikeO and Oldbiker have mentioned you will be heavily sedated, it will take a couple of days to settle in and will be so welcome if you struggle with your swallowing. I had mine fitted during my first operation and did not even notice it, its not a long procedure the worse bit is waiting for it unless you are lucky and are first on the list. Hope all goes ok with the removal of the teeth and the PEG fitting on Tuesday. Take care.

                                                                                                          Chris 

    Its sometimes not easy but its worth it ! 

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  • Hi,

    As Mike said  tain the pain relief and all will be OK. I needed codeine for a few days but then the pain went. You'll get used to it. Make sure you clean the stoma area as recommended to prevent infection and flush it. Once through all this removal is fine too, took 5 mins and I had no sedation. 

    Hope the teeth removal today is OK. 

    We're here if you need moral support! 

    Gill 

  • Thank you the reassurance and advice ,. Nervous about today, but I'm sure all will be ok. There is so much to process,  i would never of imagined there was so much to.put in place before you actually start the treatment.

    Take care x

  • Hi yes the detail is in the planning Hope today goes ok. 
    Hazel 

    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

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  • As Hazel. It’s the planning. RT has to avoid as much collateral damage as possible. If you ever get a chance to look at your dose plan you’ll understand. Remember it’s being delivered in 3D and vital structures are close. They have to be pinpoint accurate. It’s why we get so much radiation fatigue. A low dose  to your brain is unavoidable 

    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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  • Zakaroo - I had a PEG fitted and used it for 10 months. Yes, having it fitted is not pleasant but trust me, it WILL become your friend as you will need it to get enough calories in post-treatment. The only advice I can give is to develop a very close relationship with your district nurse who will be on hand for you to call with any problems or concerns. The daily maintenance is vital as keeping the tube moving to avoid it embedding into your body is esssntial. Keeping it clean/sanitised is also imperative because if the entry/exit point gets dire/infected their is nothing more dire or uncomfortable. You will be shown how to maintain it but be religious with your maintenance. I got a rucksack and machine with 500ml containers of food to feed me during the day to avoid having to syringe 100ml by hand multiple times per day! Your team can advise you about that - it was a godsend as it allowed me to do ‘normal’ things when I couldn’t eat orally…

    Reevsey