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

Hi Helen
Welcome, but am sorry that it had to be so..
Most that I was going to post was covered by the previous posts.
After I came home and the trachie was out someone came up with what I thought was an ideal supplement to the wipe board. They made up cards with phrases that you use a lot..
i.e: Yes, No, thanks, I need my inhaler.
You get the idea? and because you don't have to keep writing I think it would work.
Have you a laptop you could take with you? If so www.readplease.com is a free download of text to speech, easy to use. Didn't work for me as I had a graft to my arm and couldn't use the keyboard.
When you have the trachie out try to remember to place gentle pressure on the dressing when you talk, or you will blow the hole open, as Aimee says they heal well with no intervention.
With regard to your COPD have a good talk with the anesthetist, he should be able to put your mind at rest..
Anything else you think of please come back to us.
Sunshine.. love and hugs
Helen

Thank you so much for your kind responses. I'm still frightened but after reading this forum I can at least get the image of someone taking a piece of my tongue with a pair of pinking shears out of my too vivid imagination! Oh my, the thoughts that wander through my head.

Aimee, it sounds like you've been through what I'm going to experience and you've definitely put my mine at ease. Thanks for the comfort and the good advice.

Helen, I really like the idea of using flash cards to communicate. I'm sure that will help a lot. I'm making a note to myself about using gentle pressure on the trach dressing. Thanks for the tip. And the sunshine.

Helen

Helen, I have a question. Why are you getting a feeding tube thru your nose instead of a Peg tube? It swwms to me that Pegs are alot more "user friendly". Amy

Amy, I was told that the post surgical swelling would prevent eating or breathing so I will have a temporary feeding tube through my nose and a trach. It's still unclear whether or not I will need radiation treatments but if I do, I will first have to have all my teeth out because I have really bad gums. I wonder, if it should become evident during the surgery that I will need radiation, could the surgeon go ahead and pull the teeth then? Maybe I should ask her. Seems like one big misery would be better than two.
Helen

Helen, John's teeth were removed during the 1st surgery ad his peg was inserted then too. It was a good plan because the pain meds in the hospital during recovery kept him pretty much pain free and by the time he came home, he did not need real strong medication. Be very clear about the questions you want answered by your surgeon, and insist on clear answers from her. Amy

Helen,

I am really sorry to hear all you have experienced and the journey yet ahead for you. Keep asking your questions and you will find all the answers from people that have traveled the road in front of you. In won't be easy but it is well traveled.

I will certainly be praying for wisdom and guidance for your medical team and comfort and peace for you and your family through these difficult times.

Ed

Helen.

Welcome to OFC and sorry to have ou amongst us.

Regarding the neck dissection it seems to be standard procedure nowdays to do one. The dissection is done primarily to remove lymph nodes in the neck area. However there are different kinds of neck dissections which can remove the SCM muscles, the jagular )vein and spinal accessory nerve (SAN) along with the lymph nodes. The one that removes all is called the Radical Neck Dissection.

The other is called the Modified radical and this one primalrily spares the SAN nerve. Saving the nerve will eliminate the arm and shoulder problems caused when the nerve is removed. Although physical therapy can alleviate the arm and shoulder problems. Please discuss which neck dissection will be done with your Dr.

Best wishes on you surgery.

Vin

I want to thank you all for your advice and your best wishes. Tomorrow we are driving to Shreveport where we (myself, my husband, and our daughter) will check into a hotel so we can relax a bit before the surgery Monday morning. I'm frightened but almost eager to get it done. At the same time, it's hard to even think about surgery because my mother died yesterday. And I'm disappointed and even angry that I will miss her funeral. But in my heart, I know she will be with me always.

So again, thank you and I will post again when I get out of the hospital.

Helen

Best Luck with your surgery, Helen and condolences on the passing of your Mom. Glad to hear you have family with you in Shreveport. Amy

Helen
My Mom died 12 months after my surgery, but I know that Moms are very special and they put their kids first, so go get it done and your Mom will be with you every step of the way (remember always that special love between Mom and daughter) It's what get me through my current surgery.
No it's not fair, but it is life...
May your God walk with you.
Sunshine.. love and hugs
Helen

Its a ll been said by these wonderful people onthis forum .i just like to pass on good wishes to you ,you appear very strong and positive . ...you can fight this luv an prayers helen ....regards maz xx

Hello again and thanks again for all the best wishes.

I'm back home now but still tired and a little woozy. I expected to wake up after surgery with a trach, a feeding tube and no teeth. Instead, I wake up with no trach, no feeding tube and six teeth. I felt like doing an impromptu "Eric Cartman"
"I Have Six Teeth! I Have Six Teeth! ....."

This thread is getting long so I guess I should end here and pick up over in "Currently in Treatment" as that is indeed where I am.
They found cancer in three nodes and also outside the nodes and I am classed stage three. Next, in about two weeks or so, is chemo and radiation. In the meantime, I'm glad to be home.
Helen

Hello everyone, I'm Helen's daughter, Lisa.

I wish to thank you all for the support that you gave my Mother in her time of need. You really helped her to find some peace during her illness.

Unfortunately, I also need to tell you that she lost her fight to cancer on August 15th at 1:00 am. She fought hard, but the combination of radiation and chemo at the same time was just too much for her.

To everyone else going through this battle I send my warmest thoughts and prayers for your victory.

With metta,
Lisa

Lisa, your Mom went thru a lot in the last couple years, more than anyone deserves. We wish you the peace that comes with time, and we offer our warmest thoughts and sympathies following your tremendous loss. JaneP.

Lisa, You mother was certainly a fighter--and had been through so much with Katrina before her battle with cancer even started. I'm so sorry for your family's loss of her. You also will be in my thoughts with sympathy..... Nelie

Lisa, I am very sorry to read of your Mom's passing....You are in my thoughts and prayers, Take Care, Love, Carol

Lisa
I so wish this was not so for you, to lose your Grandma and your Mom in such a short time, no, it's not fair.
I lost my Mom almost 12 months ago, and the heart stopping numbness that takes hold of you is so unreal.
Having said that, the bond between Mom and Daughter is so special that I know your Mom would be so proud to have had you by her side on this journey.
May your God walk with you and comfort you.
Sunshine.. love and hugs
Helen

Lisa, I am so sorry to hear about your mother. She was a brave woman and will remain in our thoughts and prayers. I am glad that she found support here and hope you will too. My deepest sympathy for your loss.
Regards JoAnne

Lisa,I want to add my sadness to the list. Your Mom sounded like a heck of a fighter. I'm so sorry it turned out this way. Amy

Lisa,

Thank you for letting us know about your mom while you are going through this. I am very sorry for your family's loss.

Sincerely,
Lisa