Hi. I won’t duplicate my profile on here but in general terms; Tonsil Cancer in 2018, a rough journey to get here and still enduring horrific side effects from the radiotherapy in particular!
I had a PEG fitted prior to CT/RT and it was a real help as my throat was destroyed inside and out. I got rid of it 11 months later and have had x7 Oesophageal Dilatations post treatment and maybe rode my luck with them because on the 7th procedure (nearly 2 weeks ago) my ENT Surgeon tore a hole in my oesophagus when stretching it. I’ve been in hospital since waiting for it to heal and being fed by a Nasal Tube.
I have had to concede that I am now going to need either a RIG or return to a PEG for the rest of my life as I’ve been aspirating when eating over the last 6 months which landed me in hospital earlier this year with pneumonia! My oesophagus is knackered and my SALT team suggest that is possible I won’t ever to be eat ‘normally’ again which is devastating. Eating never went back to normal and I am where I am at the minute
Anyone have any experience of aspiration and needing to become almost entirely dependent on tube feeding?
Any help, thoughts or shared experiences welcome - I hated every minute of having the PEG during my treatment but now it might be the option of continuing with life or accepting defeat having shreddied weight in the last few months being unable to eat/drink properly…
