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.

Rahel:
Welcome and great attitude. I had the same thing going on when first diagnosed. Started as ear ache. ENT gave me ear drops (Can laugh about it now). 3 months later after Dr. and dentist uncovered a lesion under my tongue an oral surgeon was doing biopsies and they were coming back negative! He never gave up (And I wasn't about to) and we finally figured it all out after a couple of biopsies. Glad to hear you didn't give up or give in! Good luck with finding foods and liquids that you enjoy. I always enjoyed eggs so that was one of my staples. I did a lot of runny oatmeal and soupy mashed potatoes. You'll find your grove, especially with the attitude you're carrying. GREAT JOB!!!
Once again, Welcome and Best Wishes for speedy recovery,
Steve

Rahel, welcome to OCF. Right now is a difficult period for you to go thru. It will get better and in a couple of months you will be eating that apple pie Here is a list of easy to eat foods. When you are ready it may be helpful to you. Best wishes in your recovery.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Thanks for the warm welcome! Very helpful!

Christine, that list looks great for the future. Unfortunately I'm not ready for most of it yet. I'm still unable to swallow anything more solid than a liquid - even jello and ice cream have been too chunky. Bummer.

Luckily, I'm looking forward to my sweetie cooking me three different pureed soups today. So I'll have some more variety, and I'm optimistic that they'll be tastier and heartier than the boxed soup options.

Also, this morning I was thinking that I'll ask my friends and family who are local to keep me in mind if they go out to nice restaurants - that if they come across a totally pureed soup on a menu (and if it's gluten- and egg-free) that they should get an order for me to go. That way I can have even more options.

Thanks to both of you for being there with me as I wade through this. It really helps to have people hearing where I'm at and understanding what I'm going through.

Appreciatively,
Rahel

Hi Rachel, I had a similar surgery to you back on the 28th April. I remember that stage of forcing myself to drink those fortified drinks although initially I tended to pump some of them through my PEG tube. The medics seemed to manage my transition from intravenous to PEG tube to drinking tp eating yoghurt to real food quite well so that I never really got hungry. Fortunately, nursing care was good and I had my first proper meal on the 9th May which was the day before they released me. First evening home I managed some salmon braised in coconut sauce with mashed potatoes. It felt like the best meal of my life even if I needed sips of water to help it down and it took ages to finish. From then until my radiotherapy started to affect me I was eating fairly well, softer food with lots of sauce. Today, I have just got home from a late sunday lunch out in Liverpool with friends when I had scallops to start, duck breast and tiramasiu. All eaten with no problem at all. So don't be too down, it will get better.
I did quite a few soups in the early days and after radiotherapy prepared by my wife who put lots of puried normal food in the soups so they were quite filling - and much better than the fortified drinks.

Rahel,

A really good food to eat is pureed porridge. I cook oats with full cream milk for half hour so it's nice, soft and creamy. Put in blender with a banana, add mire milk and blend it. You can get the consistency that is comfortable for by adjusting the amount of milk. I had this for dinner every night for nearly 3 months. It's filling and nutritious as well. Hang in there, it will get better.

Minh

Rahel, welcome and I'm glad you've come through the worst of it with a positive attitude. Especially given the lousy hand you were dealt by your first doctors.

Can't really add anything to all those other great suggestions eating wise. I well know the inability to tolerate any solids. I didn't even want to drink water for months but forced myself.

Hang in there - you're on the upswing!

David 2

You guys, this is great. Thanks for all the comments and support. It feels really good to hear from people who understand what I'm going through.

Minh, that's a great recipe! I think that will be my dinner tonight! Plus, I can report that the homemade soup (potato/fennel/celery root) I had for lunch was a nice change and really delicious.

Today, I discovered the I'm Too Young For This website (i2y.com) for young adults with cancer. I started listening to the Cancer Sucks podcast, their "Delayed Diagnosis" episode. It was good, but I decided to do a jigsaw puzzle while listening, and afterwords realized I am in a lot of pain in the area near my neck dissection. I think my head was tilted towards the puzzle in a way that strained my muscles, and now I'm in more pain and feeling more fragile. I guess it's a learning process of what I can & can't do. I hate that it's numb on the surface of the skin, but painful underneath - crappy combination of numbness and pain in the same spot.

I wish I knew more about why my throat hurts so much when I swallow. From poking around online, it seems the sore throat is likely from the breathing tube during surgery. But I wasn't expecting this additional level of healing, and I'm really looking forward to my throat NOT hurting someday.

Thanks for listening. Hearing you've all been through similar stuff helps me feel not so alone.

Rahel

It�s a welcome from me also Rahel and as you can see by my signature it was also leukoplakia.
I had it for many years and was getting it checked every now and then as it does not always turn in to cancer. Some of us just happened to win that lottery!
As your operation was only around 8 days ago you need to give yourself time (and a lot of patience) to heal. I had the sore throat after every operation from the tube and also an arm I could not lift above shoulder height which I also presume was placed behind my neck during my orginal long operation.
You already have some good advice here but if you really crave that apple pie now why don�t you have it. Apple pie is no good without cream so blend it and keep adding cream until it gets to a consistency you can tolerate. Just a thought but at least you get the taste
Wishing you all the very best for a speedy recovery.
Gabriele

Rahel,

As you can see by my signature, I had the same treatment as you, although I was Stage I. You seem to be doing very well and I will add, much better than I did at the same amount of time.

Feel free to email me if you think I can help with any of your problems.