Hi, my name is Nancy and I've been meaning to write for awhile. I've needed support from people who have taken this journey for a while now, but too gripped with fear, anxiety and depression to even try to express myself. As you can see from my signature I'm not new to the site. I am supposed to start radiation on 8/26 which is at 8 weeks post surgery, instead of 6 for a variety of reasons. I didn't push it as now I can drop my son off at college (freshman year) and also I'm physically not ready. I lost 13 pounds which I never gained back in 2011, then another 10 this last surgery, which puts me at a whopping 103. I try my best to eat, but it's hard. I will get a G tube placed in a few hours, which was my idea, and finally the R.O. concurred. I'm just a wreck about it, and of course the radiation. I don't need to talk to anyone, but I'm thinking about some meds. I'm being treated at UCLA, which actually is outside my HMO plan and I trust my R.O. One thing that is worrisome, is that the UCLA resident who works with me, tho she is awesome keeps acting like I'm gonna bounce back and be ready to go in November. I'm a Sign Language Interpreter, I need to move my neck and use all my facial muscles and speak for long periods of time. I don't imagine I will be able to get back to my profession for quite some time.
I've printed out Christine's list of food, and "Fishmanpa's" swallowing exercises. Thank you both so much. Because I heal so slowy I worry. I'm still not at 100% since the last surgery, and have an apthous ulcer which is healing slower than usual. That's normal for my mouth, so I can't even begin to imagine what radiation is going to do to me. I can go on and on, but I don't think I need to, after two years of reading posts, making a few comments and lots do prayers for people, I'm confident that you understand where I'm at by what I've said so far.
I do have two questions...when I need some encouraging words from any of you, can I just continue on this thread for awhile? Or I suppose if I have a spefic question, I suppose I cam start a new topic. Also, a friend of my sisters went through this and he said he had some kind of elixir that he took before he practiced swallowing everyday, however he can't remember what is was called? Anyone know the name, or names of this elixir?
Many many thanks for reading my post, and for all that you do. You are truly amazing people. Hopefully when I'm on the other side do this, I will have encouraging words for future "Posters"
After reading what I wrote I can see that it's a bit repetive, but it's the best I can do expressing myself in writing. Sorry

Hi Nancy,

If you have a specific topic to ask about, go ahead and post a new thread with that topic in the heading; you'll have a better chance of getting a response. If it is more general, feel free to post a message to this thread.

Elixers - There are many alternative (not approved by proper entities) cancer therapies. At best, most might go as far as agreeing to include them along with the standard medical recommended treatments and therapies. By definition, "alternative" generally means these therapies have not been through formal clinical trials nor vetted in peer review journals, so there is no solid evidence any work and how well.

Some boards, I believe this is one, that does not condone any alternative treatments. Even discussions getting into specifics of them may be banned. I'm sure one of the admins can chime in on the rules.

Best to you, Don

Maybe you are talking about Magic Mouth Wash, other names a well, which is made up differently by each pharmacist or chain. It's a combination of 4 or 5 over the counter meds, and a prescription medicication, that will numb the mouth, throat, enabling one to eat, exercise the mouth. Some are swish and swallow, and some swish and spit, depending on the ingredients.

Hi Nancy - My son used Magic Mouthwash and it worked well for him as long as (he said) he tried to eat the most in before the numbness went away. After a while it didn't seem to work well so he went to another that worked well that was over-the-counter at Walgreens. Then he went back to the Magic Mouthwash. Everyone is different in their reactions and sometimes you have to try different things to see what works. BUT - whatever you try, you should always check it out with your doctor to make sure he is aware and approves of whatever goes into your body, even vitamins or any other medications.

Many Thanks!

Don is correct, Nancy. OCF is dedicated to providing correct scientifically proven medical info. If anyone feels the need to discuss alternative treatments there are other websites for those types of things. On this site someone could be reading about something that is unproven and could take it as OCF supports that treatment, they could try it and have some pretty serious consequences. Oral cancer isnt something to fool around with, it has almost a 50% survival rate at the 5 year mark. Trying out different unproven treatments could delay the start of conventional, proven medical attention which would make OC much harder to treat. Im sorry, I do not mean to hijack your thread! I wanted to explain about the dangers of alternative treatments and why they do not belong here on the forum.

Don was also correct with how to post. Its ok to continue here with general things. Specific questions probably should go under "Currently in Treatment" or "Medications, Treatments, Procedures" depending on what your question is.

Please try your very best to bulk up a little. Chocolate milk is very high in calories. Drinking 3 pints a day extra would increase your intake by 1200 calories. I would also suggest boost very high calorie. That has 560 calories per 8oz container. If you can add 3 of those to your daily diet your may be able to gain a couple pounds. I know its not easy but it probably will get harder down the road. I hope you are one of the lucky ones who sail right thru. Some people are not affected as dramatically as others with their treatments and seem to have a much easier time than the majority of patients.

Try to line up some helpers. If you havent lined up drivers, try to remember everyone who offered assistance and let them know when the time comes you will call on them. The American Cancer Society can help with drivers. I try to drive someone at least once a month to their appointments.

Best wishes with everything!!!

I have my peg in as of yesterday and I will start using that and of course still eat.

As for alternative treatments, oh no I am not into that at all, I must not have worded my question correctly. I just wanted to know about the elixir that helps soothe the throat, and I see from Don's post the Magic Mouthwash is an rx and I believe that's the answer I was looking for. I didn't realize it was an rx.

I appreciate everyone's input and will post with any more questions. (In the right place) For the most part reading others post for the last two years has been so very helpful.
And yes Christine, I'm on it with the drivers, thanks

Nancy,

It looks like most people dealt with the 2nd question, but it sounds like the first was pretty important...so yes, this is the place for support and to vent, and to share.

I was pretty down for a time, and never wanted to burden my family who was already stressed out enough, so I came here. Everyone has gone through the "why me" times, and stress about the future, work, and the like. You're not alone.

I am a lawyer and a litigator, so talking is my profession. When my surgeon told me I would lose half of my tongue, I had no clue what that meant for the future. Happily, I was back to work within a month, and within 6 months (and a lot of physio) I had my full shoulder range of motion back and most of my neck. I played baseball this season.

Both my speech and physiotherapists said my recovery was due to my commitment to the treatment plan, and doing all the homework for both. I now am a mentor in Alberta for those going through OC.

You can do this. Set your mind to doing everything you are told to do, even if you're tired, or don't want to, or it's hard. It will be hard, but it's worth it.

Just a little hint with the Magic Mouthwash. Many have numbing agents in them. It really does help in giving you a pain free window to eat but if you're taking pills, take them BEFORE you use it as you won't be able to feel your tongue!

"T"

Nancy since you already have the peg tube. Are you able to use it? If you havent done so already you might want to start trying it out. Did you get a feeding pump? If not, ask your doc to prescribe it for you. That way you can get extra nutrition and hydration while you are sleeping. Just make sure you always sleep propped up on a couple pillows so the formula goes where its supposed to.

Where you post isnt a big deal. If its that out of place I can move it if necessary. Same with continuing with the same thread or making new ones, its not anything to worry about. Im very glad you have taken the time to educate yourself. An informed patient is a smart patient and they can advocate for themselves.

Good luck!!!