Hello everyone! I am new to this site, I found it while surfing the net for topics relating to Oral Cancer. I thought this would be a great place to read what others are going through and how they are coping with their cancer.

I am here as a supporter for my boyfriend who I have been dating for eight years, and just recently he has been diagnosed with Oral cancer. Unfortunetly, it started on his tongue and spread down to his lymph nodes very quickly. I never knew anyone with cancer before, so I am just feeling afraid for him, I wish I could take his pain away.

October 31, 2006 is the day when he underwent surgery to remove the cancer on his tongue, lymph nodes and under his chin. 98% of his tongue was removed, and tissue from his thigh and wrist were used to reconstruct his tongue. After meeting with the surgeon, his concern was that my boyfriend may not be able to swallow again, and that using a tube to feed him would be what he might have to do for the rest of his life.

The next step is recovery, radiation and chemotheraphy. I just want to hear one thing positive, with him being 24 years old, everything has been going so quickly, and everyting feels so scary. If anyone out there has been through this, please tell me what I can do to help or if you know anything positive, please share with me.

His birthday is next week, he will be turing 25 - we are all hoping for something good to happen.

Thanks for reading this, hope to hear from someone soon.

Welcome,

Sorry that this has happened but you have found a good place for help and support.

My cancer started on tongue in 2004, went in for surgery took 1/4 off. Everything was fine. I could to talk, eat as before.
Then one year later found lump at base of neck. This time had surgery to remove lymph glad, part of neck muscle, and jugular vain. Because it had spread, had to have Radiation & Chemo.
The feeding tube is a good thing. It will help him as he goes through treatment. He will need all the nourishment he can get.

I am not going to lie it was not a fun trip. I am now 9 months from last treatment. I am slowly recovering. I have had ALL CT scans come back clear at this time. I do run into problems now and then. I just take one at a time and one day at a time.

I know all of this is over whelming. Take one step at a time and ask Dr. all the questions you want.

Take care,
Diane

Thank you so much Diane for your response, I really appreciate it. Asking questions has been the only thing that has helped me to get a better understanding of what he is going through.

1/4 of your tongue and you are able to talk and eat, wow - you are amazing. Did they use tissue to reconstruct your tongue as well? I am glad that you did respond - your message gives me some hope.

Was there anything in particular that helped you feel better? Anything at all, I just want to do what I can for him.

Thanks again Diane, may God bless you and help you through everything, I pray that you stay happy and healthy.

OV,

No I did not have reconstruction done. I know that there are others who have. Maybe some of them will find your post & explain.

All I can say is be there for support. That is all you can do. Find information that will help him with the anxiety of it all. This web site helped me the most.

Like I said one day & step at time. Learn as much as you can. Also you as a care taker must take care of self as well. Try not to let this over whelm you as well. Be sure and read the care takers page. I am sure you will learn a lot there.

Take care,
Diane

Dear OV, what a tough thing to face at age 24\25. I hope you are strong enough to help him through this because he has quite alot to deal with over the next few months. This will be a one step at a time process and if you will ask questions during each step, someone here will give you answers as best we can. My suggestion to you now is to just concentrate on the immediate future-try to learn and understand what happens during radiation and chemo [there is lots of good info here if you the search button] And lots of people to talk to. Try not to panic because that won't help anyone. Amy

OV

I know it looks pretty bad right now and overwhelming to say the least. At 25 he has age on his side. The first order of business is to get him through the surgery recovery. Don't think about anything else. Take things one day at a time. He will not be very positive about anything right now and it will only get worse before it gets better. YOU can help him a lot by trying always to present a positive and strong outlook. My wife, who I could never have made it through without, was always strong, firm and at times nagging me to do what I was suppossed to do. She would often cry when she wasn't around me. This is something she just told me after reading your post. I never knew that and I guess looking back I'm glad I didn't see her cry.

When he is ready for rad and chemo, we are here as well but it always helps us if you give us as many details as possible. Don't ever think you are being to wordy. We all know or can imagine what you and he will be going through and we can definitely help both of you.

You must make sure he gets his daily recommended water and liquid food. Don't let him slide one meal, one day or he will get into trouble real fast. If he thinks the feeding tube is taking to much time consider Carnation Instant Breakfast VHC. It has 560 cals in 8 ozs. It helped me a lot.

Remind him that his goal is to survive and live until he's a 100. He has a lot more years to live than most of us. To survive he must be positive, determined and strong to get through what will be thrown at him over the next several months. Both of you will travel through a very dark and uncaring tunnel but you will see the end and it will get better if you both remain committed to rid his body of this uninvited desease.

We hope to hear lots from you and or him for a long time to come.

OV,

I must echo what David says. I too couldn't have done this without my wife's care. It was the most important thing in my treatment and recovery.

There is a lot of good advice above so I can't really addd to it. I really just wanted to say welcome and restate your boyfriend has a long road ahead, the only way to get it done is one day/step at a time.

I'll keep you both in my hopes and prayers

To Diane, John, Daivd and Tim, thank you all for your support and for responding to my message. Wow, just one day of putting up a posting and all of your messages have really impacted my emotional state. I felt a lot better this morning when I read all of your messages. All of your advice was great, and good luck to all of you in your journey through this.

I finally got to see my boyfriend yesterday, it was the first time after surgery. I was afraid of how he would be, or how I would react when I saw him. I didn't know if he would be awake or if I would just fall a part when I saw him. To my surprise none of the above. He looked great, he was awake and kicking!!! He wasn't allowed to speak, due to the sugery on his tongue, but when I arrived, the first thing he did was hand me a letter that he wrote while he was waiting for me to come. He had stiches starting from his bottom lip, all the way down to his neck. He was swollen on the one side where the large tumor was, but he still looked great.

He has a lot of tubes in him, but even so - he is working hard on getting better. The nurses told us that the next day they would already start to get him out of bed to help with the blood circulation and the swelling. He held my face and touched my hands, and used hand signs to tell me he loves me. I have never seen anyone so strong and brave. As I am sure all that have been in the same shoes, your partners must think the same of you.

As David said about his wife crying away from him, I do the same. I know it helps me to release my frustrations and sadness, but it doesn't help him to get stronger. But seeing him yesterday made all the difference in the world to me, just to see him is the best feeling. He has always been my strength through troubled times, and now I am here to do the same for him.

The next step for him is recovery from the hospital, and for him and everyone around him to take it one day at a time. If anything was difficult to watch, was him gasping for air everytime the oxygyen tube moved, or when he would write on paper to the nurse "I have trouble breathing".

He did ask me questions like "do I look different?", or "do you have a mirror?", in which anyone in his place would be concerned in the changes that take place after surgery. But I think when you love someone, you go through the good and the bad together, no matter what happens - if the love is real, you can get through it together.

For all of you out there that have already been through it, I admire you and I am happy that you have made it through the tough times that you did. You are all an inspiration for me to be the stregth my boyfriend needs, and my good wishes are with all of you.

Ov,

Great post...and it seems to me the love is real for you two!

There were several good things that came out of this for me. One was I and two others in my family quit smoking back in June when I was Dx. The other is I have never felt so close to my wife as I do now. It's easy to say things like I love you and your my best friend when things are good, but when the going is tough is when you prove the love is real (as you say.

Still thinking good thoughts and prayers for you both

Ov,

I'm so impressed with your maturity and commitment to your beloved. Got tears in my eyes reading your post.

Keep us posted on how the healing progresses.

Loretta