First timer - Sayng Hi to other H & N cancer newbies!

Thanks for your message Linda.

Hi Bliss Yes I got a nose  tube fitted while going through treatment which I would not recommend as they couldnt get the tube down  because my throat was so  swollen. You won't have this issues as you are getting a Peg tube fitted and is really great as saves all the pressure of eating which I am going through now. Dont worry you are doing the right thing for a pain free time, I have had 30 radiation and 4 chemo , My Son got me audible books and I listened to pg wodehouse which passed the time All The Best Regards Min  

Cheers Peter, I appreciate that

Good to know Min!  Yes, I’ll keep myself occupied - I’m sure. Thanks

Hi Biss, I was diagnosed with SCC in neck lymph node HPV 16 Positive with Unknown Primary back in June 2020. I was fitted with a PEG a week prior to my treatment (30 radiotherapy and 2 Cisplatin). The PEG caused me no issues but make sure you clean around it every day as well as start turning it after two weeks. I was shown how to turn it via a video call due to Covid. You will be contacted by the agency who supplies all the equipment you need (plastic syringes, feed, tubes, a stand and an electric feed pump). Fortunately I didn’t need the stand or the feed pump and tubes but be prepared when it arrives it’s a lot of boxes and a bit overwhelming. Mine all stayed stacked in the utility room until it was collected when my PEG was finally removed. I did worry initially about turning over in bed and lying on the PEG but found that I never did, but I could lie comfortably on my side. I always wore a snug fitting vest in bed as I felt more secure that way. Once you’ve got your clothes on no one will have any idea you’ve got a PEG. 

I did use the PEG for some Ensure 2 Cals as I needed to boost my calorie intake as I did finding eating difficult at times. I also used it if swallowing became a little bit tender to take painkillers as I was prescribed effervescent Paracetamol and Co-Codamol although this was not often. I finally had my PEG removed at the beginning of December although I had stopped using it totally in the first week of October, but until I had my 12 week post treatment PET scan the consultants decided it was best to keep it in. Removal was a matter of a couple of minutes and the hole healed up within a few days.

Hope this helps, any questions please ask

Carol

x

Hi Biss. No PEG but a nasogastric tube when I couldn’t swallow. At the end of week three for 8 weeks or so. I didn’t swallow anything but water for six weeks so it really was a life saver letting me have food and medication l. Took it out when it had done its job. 

Hi, Biss, I had a RIG which is very similar to a PEG, don't worry about having it fitted, it is straight forward enough, and you will quickly get used to it. I was 100% reliant on mine from about week 3, for approx 10 weeks, so they are very good to have. It is 1 thing less to worry about if you have trouble eating. You might not need to use it, but it's there just in case you do.

Regards Ray.

Thanks Carol, so useful to hear this. Appreciate you taking the time to reply and for the info.

Cheers Dani

Okay Ray, thanks for that.