Well, I finally gathered enough courage to post on this wonderful forum. I'm a 57 year old woman temporarily residing in a very small town in central Louisiana. My husband is staying in a FEMA travel trailer in the front yard of our ruined home in New Orleans. I won't go into the Katrina story because I'm sure you have already heard it more than once. Since the storm, my mother-in-law died, my cat died, and my mother is in the hospital recovering from surgery for an obstructed colon. As if that weren't bad enough, I got the results of my biopsy a few days ago and I do have oral cancer.

My surgery is scheduled for Monday, May 22 at the cancer center of LSU in Shreveport Louisiana. They will remove the tumor on my tongue and do a neck dissection. Tell you the truth, I'm not really sure what all they're going to do. But I do know that I will be in the hospital a mininum of 6 days and I will have a trach and a nasal feeding tube. And I'm more than a little frightened.

So many questions run through my mind, some of them probably silly. Like how do you brush your teeth will all that swelling? I also have COPD; how do you use an inhaler through a trach? I know I should have asked the doctor all these questions but I just didn't think of them at the time.
Ah well, I guess I'll find out.

Anyway, i sure would appreciate any words and or thoughts of encouragement. Maybe even a prayer. Thank you for reading this too long introduction.

Helen M (nehkima)

Hello Helen,
My husband is down to his last 10 radiation treatments. I have had so many questions answered and problems solved just by reading all the posts here, and be searching through the old posts whenever a treatment issue comes up.
It has not been easy, but as you will see on this website you are not alone and all of these people have gone through it!!
Good luck to you, you can do it-stay with the people here for answers, Cindy

Hi Cindy,
Thank you for the quick response and the good advice. I first started browsing this forum last summer after my doc told me that the sore on my tongue might be cancer. I was referred to the ENT clinic at LSU/NO and had an appointment in September. Unfortunately, Katrina changed my plans and dummy me thought that I could postpone medical problems until we got back home. Not so. I finally went to see a doctor when I realized that this tumor was really getting big. I keep biting my own tongue whenever I eat. And I do love to eat.
Thanks again, Cindy, for your kindness.
Helen

Hi,Helen: You have been given way too much to deal with! But here you are and you still sound strong. Since your hubby is in N.O., do you have support where you are? You will need help after surgery. About the trach- the hospital nurses and Docs will be on top of the COPD and will teach you how to use an inhaler when you go home. Hopefully you won't have the trach in for very long. Keep eating now, just be careful not to bite your tongue Do you know if you are getting a peg tube? LAO, REST AS MUCH AS YOU CAN before you go to the hospital. No one gets any rest there. It sure sounds to me like you are a survivor. Amy

Hi Amy, I thank you for your encouragement as I sure do need it. Sometimes I believe I am a survivor and sometimes I think I'm just numb. But for all the bad that has happened, and Lord knows there's been way too much bad for too many, there has been an enormous amount of good. Pre-K (Katrina) my husband's mother and his aunt had not spoken in years. But after his aunt took us in, they reconciled and made peace in his family. It made it a little easier when his mother died last month of respiratory failure. As for me being strong, well, whether or not I feel that way, I try to behave in such a manner to help set some sort of an example for my two grown children. Life is hard and we all get knocked down sometimes. My husband and my daughter will both be with me until after the surgery and my daughter will stay with me while I recover. But during this week, I'm going to eat and eat and eat....... Helen

Good luck with your surgery and recovery Helen!!

Welcome to the Oral Cancer Foundation. You won't find a more informative site on oral cancer than this website.
What did they stage your tumor at?, What follow-up treatment is planned? Did you get a second opinion?
The search engine at the top of the page will yield tons of info on oral cancer and it's treatment.
Remember to write your questions down ahead of time, like you memtioned, We never remember to ask them all we intended to. Lots of us take along a spouse or caregiver to help remember everything the doc'c tell you. The more you educate yourself the better questions you will know to ask.

All my Best, Danny Boy

Hi Helen,

Welcome to OCF and sorry that you have had to join us.

As a dentist, I will address the the question of brushing your teeth. You can well imagine that I had similar concerns to yours after my partial glossectomy. The nurses provided me with a sponge on a stick that is used for cleaing the teeth. The first few days it will really be impossible to do any tooth brushing. Don't worry about using any paste with the brush. Your main goal is to get the plaque off and this can be done without paste. As soon as you can tolerate it, do the best you can with the sponge. It will get easier, daily. If they don't have these sponges in the hospital or something similar, perhaps a family member can pick some up for you. Flossing will take longer to get back to.

Good luck with the surgery.

Jerry

Welcome Helen,
I can only wish you the best. I had my treach in for about 4 days after my release. The only reason I had to keep it in at all was one doctor wouldn't agree with another. SO we had to get the equipment for treach care and actually only used it a few times. My breathing treatments(I had pneumonia) were done through my treach also. The treach will have a plug on a string in it. I pulled the plug out and inhaled directly through the treach. Takes a little getting used. But the faster you can leave plug in and breath through mouth and nose, the faster treach comes out. I cannot elaborate on feeding tube since as soon as I noticed I had one, I gave it back to the them in an abrupt way. I ended up losing 30 pounds while in hospital. Unfortunately, I have gained 32 since being out. So much for my diet.
I wish you all the best and God bless from Texas. Curtis

Wow, so many responses, you sure know how to make a person feel welcome. Thank you Danny, Jerry, and Curtis. thank you all.

Danny, I don't know what stage I am, but the tumor measured 3.5 centimeters and we aren't sure about the lymph nodes. I assume the surgery will answer that question. The Doc says I might not have to have radiation - fingers crossed.

Jerry, the sponge on a stick sounds like a really good idea. Or maybe some of those finger sponges. I think I'll buy some to carry with me to the hospital. I always thought it would be nice if we had some sort of plaque dissolving rinse. Swish and all clean. But then, if it's strong enough to dissolve plaque it would probably dissolve your teeth! No no, not so good. LOL!

Curtis, I'm relieved to hear that breathing treatments through the trach won't be a problem. I really depend on my Combivent especially when I wake during the night feeling breathless. Hopefully the swelling will go down quickly and I will then be rid of the trach. As for the feeding tube through the nose, well, I'll just have to put up with it although it will be hard not to want to just yank it out! My mother-in-law did just that and they sedated her and put her under restraints! Scary. So, I'll be good and maybe I won't have it for very long.

Again, thank you all for your kind words and best wishes.
Helen

Helen,

I also had a trach with my partial glossectomy and neck dissection. I was connected to oxygen so had tubes coming out of the trach. The most frustrating thing to me was not being able to talk. My lifesaver was a small whiteboard, eraser, and marker that I had bought ahead of time. I don't know how I could have managed without it. Communication is so essential in the hospital.

I also had breathing treatments due to my asthma. Those were done through the trach. I had one nebulizer treatment and the rest were the inhalers. There was no problem there. You'd be surprised at how easy it is to breath through your neck!

Once my oxygen stats were good, they did put a plug on the trach. I didn't wean off, but they just went cold turkey. The first night I did have to have oxygen through my nose. They took the trach out as I was getting ready to leave. They just put a gauze pad on the stoma and said that it would heal itself. I was doubtful, but after a few days saw some rapid healing. When I went to my post-op (about 2 1/2 weeks after my release) it had closed.

I also had a feeding tube through my nose. It was bothersome and I was a bad patient with the formula they wanted me to use. I saw no way that I could tolerate the amount they wanted me to take (9 cans a day!) and only had 5 or so. We did bolus (sp?) feeding after on the 2nd day after my surgery--meaning the can of formula and water were placed through my feeding tube within a few minutes instead of extended round the clock through a pump. It was supposed to help your stomach get used to eating meals again. The feeding tube was also wonderful as it provided a way for me to take my medications as I couldn't have anything orally due to healing from the surgery.

As far as the teeth brushing--good luck. I didn't find the swabs they gave very satisfying, but I understand that my mouth had to heal. I didn't want to cause any damage, so I complied. I had checked out and still wasn't supposed to brush my teeth. Finally after a day or two home I said forget this, and carefully brushed my teeth.

Best of luck with your upcoming surgery, Aimee