Need to just vent a bit! I am a little over two years past my last surgery. I have what is most likely a permanent trache, a permanent feeding tube, and will probably never take food by mouth again. I had the base of my tongue and epiglottis removed. I speak somewhat with the aid of a Passey-Muir speaking vakve. This was my second round of oral cancer. In 2009 I had cancer on my lateral tongue with lymph node involvement. After surgery, 38 rads, and 3 cisplatin rounds, I thought that I had beaten the beast, then it came back in 2014. I am heading up to our local coffee shop this morning and have to carry my suction machine with me wherever I go. I won't be drinking coffee, but I will still be able to have the companionship of some of my friends. I know that what I have been through does not compare with what some of the rest of you have, but sometimes I feel that it just isn't fair! I get discouraged. Thank you for letting me vent. I try to be positive around my family and friends, but it's hard.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.