[quote=ChristineB]jneal.... Its smart to hang onto your feeding tube until you can go for 2 months sustaining yourself without using it. Recovery is full of ups and downs with many setbacks coming unexpectedly. I know how lousy it is having that darn tube. A couple weeks longer in the whole scheme of things isnt a big deal. Always better to be safe than sorry. [/quote]

Thanks Christine, I know you're right but I'm impatient to getting back to doing more active things with my kids. I do tape the tube down, but I'm skinny and there's no fat to cushion the site so by 'flopping around' I meant any movement of the tube between the 'exit' point and the taped down end hurts, plus wearing tight clothes just kind of bends it at the site and that hurts; the only position that doesn't hurt is when the tube is perpendicular to the surface. I've had it since September and it doesn't seem to be getting any better. I'm telling myself that I'll have them take it out, and if I can't keep up the 3K calories a day or God-forbid something else goes south then I'll have them put a mic-key in.


Joe
SCC BOT T3N0 Aged 36 (1999)
Unknown HPV status (before they knew)
SWOG Protocol - 2 rounds chemo, 6 weeks radiation
Recurrence Age 50 (2013) - same site
SCCa BOT T2N0M0
HPV negative
60% Glossectomy/Free Flap from Latissimus Dorsi Recon,
Neck Dissection + 6wks Rad Tx
Non-tobacco user