Hi everyone.
I was diagnosed on 17th December qith HPV16+ Ihad surgery to remove left tonsil on 1st December. CT scan has confirmed it hasn't spred but surgen wasn't able to remove it all. I have a meetinfg tomorrow qoth multi agency team, dietitian, speech and language etc and to talk about the feeding tube i will have to have. Am.worried about feeding tube as hate things down my throat as have a phobia of gagging and being sick. Does anyone have any information on what will happen in this meeting? Also i have to have 6 teeth removed on friday under local anesthetic. I am.due to have my radiotherapy mask.made after all teeth removed and will start 5 weeks of radiotherapy 5 days a week and 2 sessions of chemo in that 5 weeks, would like to.know qhat to expect.
Thank.you x
Hi Zakaroo. Feeding tube first. If you have a PEG fitted this goes directly into your stomach. If they are discussing a nasogastric tube let me assure you that you won’t feel it. I had one in place for nine weeks and it fed me food and pain relief. It saved my life. It doesn’t look pretty taped to your face but who cares!
Your meeting hopefully will just be to discuss your care around treatment.
Have a look at MarkEL profile where he has a pretty good diary. community.macmillan.org.uk/.../markel
There are a few pages on treatment in my blog at the bottom of this post.
Radiotherapy effect start kicking in around the end of week two increasing till around two or three weeks after treatment ends. It’s nasty but doable a day at a time. I made sure I kept my mouth clean and took all my pain killers by the clock. I was nearly 68 when I started my RT and if I can do it so can you.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
A PEG is put in from the outside of your tummy with an endoscope inside to monitor what’s happening. The scope goes into your mouth down into your stomach ….but you won’t feel what they are doing. You’ll be pretty sedated. It’s something to discuss at your meeting. Don’t be frightened if it. You might not need it, some folk manage to swallow enough food to keep them going but most don’t and you’ll be glad of it if you need it.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Zakaroo, i agree with Dani about the fitting of a PEG, i had mine fitted during my operation so was sound asleep, i believe you can still go for this option. Mine was done in 2008 and technology has moved on since then, each patient is different so its certainly worthwhile talking to your consultant about your concerns about gagging etc as I'm the same plus with your surgery it might be better for heavier sedation. The procedure does not take very long, its just the waiting. Wishing you all the best. Take care.
Chris x
Its sometimes not easy but its worth it !
