Hi everyone,

Had surgery 6 days ago, glossectomy R side, plus partial neck dissection. Path results not yet back. I'm recovered enough from surgery to get online, and wanted to reach out to this community.

I had leukoplakia (sore non-healing white patch) on my tongue for 3 years. A biopsy in '08 found just "inflamed tissue" and the docs didn't suggest removal or any regular follow-up. Been bugging them about the painful sore on my tongue ever since, and recently insisted on second opinion at UCSF Oral Medicine clinic, where they immediately diagnosed SCC. You can't imagine how angry I am that my docs at Kaiser have been ignoring my complaints for 3 years, and now I have Stage 2 cancer. If I hadn't been a super squeaky wheel, the cancer could have festered for who knows how long!

I'm on a liquid-only diet until my tongue can re-learn to swallow. I'm finding the limited food intake the biggest struggle right now. I can't swallow anything other than liquids, and my throat still hurts, I assume from the breathing tube. So "eating" is (1) painful, (2) difficult with just the left side of my tongue working, and (3) boring since I'm sick of smoothies and pureed soups.

I'm even pretty tolerant of limited food options. For several years I've been gluten-free and egg-free, with long periods also off milk & sugar. But right now it seems I'm hungry often and nothing is satisfying. Even ice creams aren't liquid enough.

Just wanted to vent a little. I can end by saying I feel incredibly lucky to be alive. I'm lucky I had the willingness and ability to be pushy enough to get a second opinion outside Kaiser. And reading others' stories I see I'm lucky to be able to swallow even liquids when I leave the hospital. But still, being here, in my shoes, I'm hungry and nothing I can eat is satisfying.

I keep telling my sweetie that I'm looking forward to apple pie some day.

Thanks for listening.