John,
I wish you felt better, but I do not think you are coming to terms with the fact that your quality of life is zero, because you are reaching out.

Anyway, I could not eat very much for the first 4 weeks. I made myself eat through treatment so that helped my transition. Soft foods like pudding were too thick for me. Some soup I could eat, pureed really well. People brought over food. I wanted to say, "Is this for me? I can't eat it AT ALL." I guess it was for my husband, which was ok, he needed it too. Lots of things hurt my mouth & tongue. It was frustrating but I believed what people said about getting better. I worried about other things, but not about being able to eat again.

Yes, one day, don't know which one cause I did not write it down, I got up and went to the refrigerator and pulled out a casserole dish someone had left, and I slightly heated it, so it would be softer, and I just knew I could manage it somewhat.
Oh, it took me over half an hour to eat half a dozen bites. But that was progress.

It just very gradually got better. It took me a long time to eat a meal for months. I did not write that down either, so don't know exactly.

The tongue thing you described, I can't say I understand that. Might be because of lack of saliva, and it is dry. Can't say for sure.

I can't imagine me eating pizza at one month out for sure--you are braver than you know. Of course it will taste differently! Your taste buds are probably not working very well at present. They will improve over time. You probably don't have saliva, that makes it tough too. I started getting some back before I was at the year mark, but have much more now at 18 months out. IMO it is ok to be drinking Boost right now, along with trying small amounts of foods, easy foods to eat.

This reply may not be just right for you, but it is as good as I can do without making the post really long. Recovery is an exercise in patience (we're called patients, aren't we?).

Best,
Anne

Last edited by AnneO; 07-01-2012 11:50 AM. Reason: spelling

SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021