Kazy,

1. Sorry you have this crappy cancer.

2. STOP SMOKING NOW FOREVER. IMO this did cause your cancer but regardless, smoking is the dumbest legal thing anyone can do.

3. Get yourself to a CCC and be treated by the best!

Thank you all so much for the information and the advice. My husband and I are gonna switch over to the "fake" cigarettes this week. (I know they still aren't great, but better than what we're doing.) I feel so guilty about smoking still, but the stress is getting to me.

Right now, I'm going through the process of telling my family what is going on. It's very difficult because I think their shock and sadness is the worst part of this whole ordeal, even including the months of horrible pain I went through before any doctor would prescribe me pain medication. I'm the eldest of six children and my little sisters are going to be pretty scared. Any ideas on how to talk about this stuff with little kids?

I'm going to call my doc and ask about the CCC options, especially if they're a good financial fit.

I keep myself pretty busy, mostly with my toddler and siblings and some online groups I'm in. The online stuff helps alot because it gives me the opportunity to communicate, which can be hard for me in real life since it hurts so much to talk and my speaking is slurred all the time because of my tongue.

Again, thanks for taking the time to respond to me, and I wish all of you good luck as well!

Don't know their ages but I would be frank and honest with them and tell them that you have been diagnosed with oral cancer and will be getting the recommended treatments and would appreciate their love and support however it's needed which you won't know until the treatment starts. The longer you delay "coming out" the worse it is for everyone, especially you which BTW is the ONLY person that matters right now.

Hi, David. They're actually 7, 11 and 11 (twins) respectively, so I'd like for them to know that I'm sick, but I don't want to scare them. I'm responsible for my little sisters in a lot of ways, and I want them to understand that it isn't their fault that I got sick, but that I'm not going to be able to do all the stuff I was doing with them before. I know I've got to look out for myself, but God knows I don't want to scar them forever with this experience if I can avoid it. O.o

Don't kid yourself, they will all find out it's cancer quickly.

Kazy,
I am sorry that you are going through all of this. I too had a tumor on my tongue. I had about 40% of my tongue removed and a neck dissection. It was tough..I couldnt talk well and my neck looked terrifying..but I made it through. I just had some more cancer cells lasered off yesterday. It is a hard thing to go through. I know your cancer is a tough one also but you will make it.
As far as telling your siblings,I have 4 children and they are 8,9,11 and 13. It was tough telling them. I told them the truth. I told them I had cancer. I was going to be ok, but mommy might look different..sound different. They were scared..they wanted to hug me and talk about it all the time. I was more than ok with that. It will be hard.Telling my family was harder than it was dealing with the diagnosis myself.
We are all here for support. Although I have not posted much,reading everyone's stories has helped me.You WILL get through this!

HI there - Sorry you are suffering I know the pain is HIGHLY unpleasant I had it for a few years before I was diagnosed and I was in constant pain. It burned and just hurt. The tongue is very nervy so I am not surprised. Up until I had the biopsy it never bled, but because cancerous tissue doesn't really heal for about 6 weeks it hurt and bled. (until I had surgery)

You will get through this.

And despite their ages do be honest with your sisters. No need to give them the gory details. Simply tell them you have something wrong with your tongue - its a tumor. In order to fix it you will have to have a surgery and more treatment possibly afterwards. You may be surprised that you will be okay energy wise and pain wise post surgery. It's actually a blessing because you don't have the intense tongue pain! You will relearn to eat and speak okay. I used to swallow and chew on my good side, and pretty much anything would go down with a mouthful of water, or almond milk. You just have to be careful when chewing that you don't munch your new graft. This concern lessens as the swelling goes down.

You can talk about cancer to the sibs, but lessen the impact by telling them you are seeking out the BEST drs, and hospital and things will be okay.

My kids are older, but I would give them updates after drs appointments etc... I never lied, I never sugar coated it, I never said I'm going to beat this etc... I just told them that I was getting the best treatment possible. Initially I was almost afraid to make distant plans. But once I finished treatment and surgery etc... I would book something and say... if everything is okay we are doing this.

The fear is always there. But you can't live your life for the disease, you accept that it is what it is, you do what you can to fight it then you live your life and find your joy.

My dr. assured me that after I healed I would have only a bit of a lisp when I was tired (your original tongue takes over the work of the whole tongue so it's not surprising that when you are tired it is tired...) I speak very clearly now. People who don't know me can't tell I've had surgery. I do have to slow down and pronounce certain letters (t and d specifically) if I am excited, but that is common for all people.

I know it's hard to look at people who love you and worry about you and tell them that you have cancer, but the sooner you do it the less of a burden it will be emotionally.

hugs. And congrats on the not smoking - that's awesome.

Thank you for your input. I guess I'll just try to be as gentle as possible and be there for them as much as I can. They already lost their parents (my mother and their father), and I know the older siblings (in their 20s) will be fine, but I'm really worried about these young ones.

They will probably handle it better than you think.

Good luck and remember we will be here for you 24/7 so don't EVER hesitate to ask us anything or bitch about anything.

Welcome. I don't have much to add to anything that was already mentioned, other good luck, and to post anytime for any concerns or venting, it helps, which was already said too