My wife was diagnosed with Oral cancer Dec 2007, A loonie size hole was left on her upper palate. went through Chemo 3 sessions of 6hrs and then Radiation 33 times. She was taking also some needles in her belly, I don't remember how long. I believe the Cancer was stage 4. My wife Lynda doesn't want to be here because she won't hear any negative aspects of the disease. It's then my responsibility to look for the positive and share with you and Lynda what is appropriate. Lynda is cancer free and all looks good. She still smokes and drinks a little but she is trying. I do bitch about it from time to time. I am no example, I have smoked outside to help her stop but she still smokes. She has had physical therapy with a dive called therabite to help her open her mouth. Therapy has stopped because the therapist only has on of these devices and thought Lynda was at her peak opening of 30mm without her teeth in. We cannot afford to buy this device and had hoped someone who no longer needs theirs could give it to us. I have posted on Craigs list and Kijhiji with no avail. She uses Popsicle stick now and then, But they hurt her tongue so much she wouldn't eat anything. She really cannot chew anything and finds it difficult to swallow. She has mostly oatmeal and a lot of Boost. Mashed potatoes and turnip with gravy, an inch or two of chicken that's about it besides a soup now and then. She has white sores on her tongue often and they make it impossible to put anything in her mouth. We have tried oral b anbesol and they don't really work. Even eating ground beef she can't seem to chew and move it around in her mouth. Whatever she does eat must be taken with water for her to swallow it down. We have another check up this week with her doctor and I'm wondering what kind of questions I should ask. For one Lynda wants to know if she could have an operation to make her mouth bigger so she can eat properly? And about the sores on her tongue, What can we do for the pain?
I am looking forward to all who would like to respond to this letter.

markmartin1

Mark,

Nothing you have described in your letter is new to us here on this board. This is a place where patients and caregivers of this disease can come and have very frank discussions about how we deal with all aspects of oral cancer.

Tell your wife that we are not here to be negative, just to help each other. We all hate this disease, but have no other choice but to deal with it.

There are a few here that have dealt with the Therabite device and may know how to get one.

By the way, I smoked two packs a day for over twenty years and quit after diagnosis. You will get a good deal of folks here who will want you and her to quit the smoking.

I have lived for 3 years eating patmeal, and very watery foods and the requiew water to go down. A 2inch piece of chicken woult ne like a bamquet. She'll do fine eating this way. I think my days of food are over and I'm not allowed to get any dentures because of a nasty mouth that can't even move anything around. It's good that she has a good caregiver in you. Make her quit those smokes for sure and I have no idea about the booze.

As broke as I am...you couldn't pay me to EVER have another cig. And IF I ever even think about it, all I have to do is look at my Mask again! I hope & pray you both quit! I'm sorry for all the side affects your wife is having, so long after TX. It gets real boring when you can't eat all the stuff you once enjoyed. The TV commercials (about food) sure don't help! The Red Lobster com. just about does me in every time! I can understand your wife's fear..to much info is not good. But, maybe some of the stories would make you (both) stop smoking. What does your medical team think of her situation? Is she still loosing wieght & strength? Take advatage of the drinks avail. (Boost, Ensure etc.)

Mark, welcome to OCF.

Let me try to answer some of your questions. Your wife's limited mouth opening is called trismus. There isnt an operation to change this. She must work it at least once daily with the popsicle sticks or she will get worse. She should also be stretching her mouth open as wide as possible and holding it several seconds, repeating it several times per day. There is no easy way around trismus. The popsicle sticks will do the same job and the therabite. She should be putting the popsicle sticks on each side of her mouth and sliding more sticks between them. This way it wont bother her tongue. A 30mm opening is pretty good, I had been at 10 and got up to 14. She needs to work hard at this to see improvements.

For pain, ask the doc. There are several things out there. If she finished tx in 2007, how severe is her current pain levels?

As far as the smoking goes. If she doesnt quit, she faces a much higher chance of recurrance. This is something that I cant understand, how someone who has endured OC and its brutal treatments continues to tempt fate. This is probably the real reason she has you doing the screening and filtering of the negative things. I was a smoker and quit upon my diagnosis, threw the cigs right out the window and never smoked again. This is something she must also bring up to the doc and ask for help with. There are several products on the market like Chatix (or something with a similar name) to help with quitting smoking.

As far as drinking goes, I dont do that either. Never was much of a drinker before. Thats something that some on here will do and some wont. Personally, I dont want anything to make my chances for a recurrance any higher. I would think that alchol would be irritating to her tender mouth tissue.

If she is able to eat chicken, she is doing pretty good with eating. Under the food tab, there are many ideas to help your wife expand her menu. So many things that she may be able to eat are listed. A balanced diet is pretty difficult when eating capabilty is compromised.

Best of luck with her continued improvements.

Check up on thrush. That may be what is making her tongue painful.

Many people say that giving up smoking was harder than kicking any other addiction(and I have heard that from alcoholics, prescription drug addicts,heroin addicts,etc).

So, while I sympathize with the urge there are so many methods out there to stop. This is one area that your wife can be proactive with her health. I really wish her luck with this.

Mark, I was sorry to read of your wife's difficulties. All the previous posts have been excellent and I hope you'll take some encouragement from them. I can only sympathize with the smoking issue, know it's a bitch to quit. My landlady, for instance, had half a lung removed 3 or 4 years ago to cancer and still smokes! Unbelievable to me, but it just proves how hard it is. I hope you avail yourselves of all the information and tools available to stop this pernicious - and life-threatening - habit.

I also must only sympathize, and I very much do, with the trismus problem. I hope she'll find some help at the link Brian posted. Please keep us posted. I also hope (man, I'm doing a lot of hoping here!) that you speak with the doctors about pain. No one should be in pain, especially when there are so many ways to attack it.

Mainly though I was gratified by the statement "Lynda is cancer free and all looks good." Congratulations to her and to you for getting through the horror. I know it's often difficult to look past the side effects and the pain, but we all have to try.

Please keep us posted on her progress.

Courage!
David2

Thank you all for replying to my intro. Very much appreciated. My wife read these post and has now quit smoking. However we are still having problems getting a therabite for less than 100. free even better. Went to the doc's today, all is well. Though he won't prescribe any meds for tongue pain. Seems like all doctors are afraid of prescribing narcotics!

Mark Martin 1

Pain management is a real issue. If her current doctor is not willing to help then please find another doctor. Talk to the doc, keep them informed and best of luck to you both.
mark

Thank you all for your support and I wish that all of you the very best.

I don't know what happened to some of my posts. I cannot find it. I was writing to a very nice lady whom her mother's cancer came back and she was real busy helping her as much as she could. She wanted to mail me a Therabite machine since her mom did not need it anymore. I gave her my address in a post and she said she would send it to me but nothing happened. I am not sure if giving addresses in posts are allowed and was deleted or what. I don't know what to think. We really cannot afford one and I'm not really a person that ask for anything. I hope somehow she or someone out there reads this and can help. She is using pop sickle sticks but they hurt her gums. She will be cancer free for two years in September and we thank God for that! She still has some problems eating and chewing but I am grateful still she is maintaining her weight. I'm just hoping she passes the so called 5 year period. If I am asking for something I shouldn't please forgive me and let me know. I just want to help my wife as much as I can even if I am too proud to ask.

You can put an address in your post, but we don't recommend it and would not delete a post for that reason. It does make you vulnerable to getting spam, which is why we ask people to exchange addresses, phone numbers and the like via a PM on the board, which is private between the two of you or by email with each other.

You haven't done anything wrong that I can see. As to finding your old posts, you can look under your name and see that you have posted 3 times. If you click on the link at the top of the page when you are signed in that says "my stuff" you can view all your posts there going back for years even.

Asking for help when you need is should not be considered by anyone as a sign of weakness, or anything to be ashamed of. There is no one that gets through this alone, and some have a harder time of it than others. If you do not ask for help (or things) when you need it, no one that might wish to reach out to help will know that you need it.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=userposts&id=5298

Brian already mentions it Mark so click on My Stuff at the top.
Sounds like it may have been a personal message and this is where you would find it. It would be the only place I would give an address as it is between you and the other participant only.