Hello everyone,

I am so pleased to find this website! My step-dad (who I am much closer to than my "real" father) was diagnosed on Dec. 10th with SSC of the base of the tongue. We went to Pittsburgh for surgery to treat what was diagnosed (6 months ago) as a cranial nerve problem...during the pre-op exam, the ENT doctor found a mass at the back of my step-dad's tongue. Turns out that was the true source of all of the pain and difficulties he was having.
I was wondering if any of you out there have had the following (this is the tx course they are planning): no surgery, radiation and chemo (cisplatinum) and then maybe brachytherapy?
I have spent all of my time researching this type of cancer and treatments on PubMed and medical journals and this is the first place I've found where I can actually speak to people who have been and are going through such a horrific ordeal...
So, would any of you have recommendations for things that we can do for Dan...people just seem to say the dumbest things to him! I have been trying to just act as normal as possible while trying to stay positive and supportive. I just don't want to say or do anything to make this any more difficult on him or my mom than it already is...If anyone has any suggestions, that would be so wonderful and so greatly appreciated!!!

Thank you for your time!
JLD

JLD, Just be yourself. I know that people say the DAMMEST things at times like this. They just don't know what to say or to do. This goes back to what I have always said...We are taught what to do when someone is born,,,we celebrate, buy gifts, we say words of praise we laugh and sing..we honor the newborn into our hearts and our home. However when someone gets very ill or they leave this world, we have no idea what to do. We are not taught what to do in times of crisis. We don't know what the proper thing to say is. We aren't taught what that "RIGHT" thing is. I have found it best not to say anything rather than to say something that would affend or hurt another. However I have also been in so many situations where termina illness and death have occured, I feel like a Pro at all this now. Which is sad to say. .But try to remember this,,,they care so much or they wouldn't be there. They are really trying to do the right thing. So please try to be patient with them. As for you just being there for him like you are is the best thing you can ever do. Love him like you always have. Make all the time that you have special. The 1st time I had CANCER I did had partical tongue removal, it was a 10 hour operation, which was a biggy, but I had no RADIATION.I had no clue just how lucky I was at that time.The CANCER did come back 10 years later. You know I don't think any of us can answer if any of the treatments out there are the "RIGHT" one to do. I think we all just take what the DOCTOR says and we pray for the best. You are doing all that you can do for this wonderful man in your life. He is terrified rather he says so or not. I don't think there is a soul that wouldn't be. You are a wonderful person to take the time to try to understand all of this for him....TRUST ME ON THAT. You can talk to all of us anytime you wish. We are here.....Always Vicki Lynn

Dear Vicki,

Thank you so very much for writing back! You are so right...to bad life doesn't come with a manual...I feel our family could use one right now.
It is kind of strange but I don't know any of you, yet you are all so important to me. I cannot thank you enough for your caring words and advice.
I have told my mom about this site and I hope her and Dan will visit it when they are ready.
I hope this finds you strong and healthy!

Take care and thank you again!
JLD

Dear JLD
just to say hi, hang on in there, my husband has had radiotherapy, he coped quite well with it, we're probably starting chemo soon as the tumour has returned, the best advice i can give you is to try & keep him feeling positive, my husband went through a time of being very depressed & he seemed to get worse daily, he is now very upbeat although still very ill, he wants to live despite the pain and daily problems. Just be there for him, let him scream & cry & rant about how unfair it is, & then tell him to fight. Good luck
Jennie

JLD,

My guess is that the best-case scenario for your step-dad is that he'll be sick as a dog for months, lose weight, get rid of the cancer, but have his eating and talking seriously affected for a good long time.

That's a lot to deal with.

The best thing for you would be to reassure him that his relationship to you is still the same, and that you are taking good care of yourself. For him to worry about your welfare, or that he is losing your respect and affection while struggling with his treatments, would make things worse.

Most of what he will go through will be out of your control, but you can reassure him with your love and support.

Ron

Very well put Ron. You are so right too. Paul and I were talking about all this and you know most surgeries you come out better than you went in..This is not how this one is--not at all. The only thing those DOCTORS are doing is getting all of the CANCER they can find. What is in the way of this goal is taken out--no matter what it is. That is the hardest thing for all of us to digest. I didn't see it that way. I thought that I would come out with SOME problems but no where near the ones that I have. They are over welming. But you know you have to look at this one way and one way only,,,you are alive. You may not want to be after all of this. But you are....That is what I got out of all this...the CANCER is gone,,,I am a mess,,,,but I am alive.....It is a damm hard truth and the truth is not always a pretty picture. I am trying my hardest to turn this around for me and make it where I am going to get better. I am not going to settle for the way I am. No WAY!! I want better! So that is my plan or goal---I am going to work and work and work...I may not ever get much better than I am--but I will never know this until I work at it. I have never been a person who settled for anything. I would work at is until I got whatever it was that I really wanted.....This is also what I am going to do within myself. Wish me the best......It is not going to be easy on me but then none of this has been...Always Vicki Lynn

Thanks everyone for your emails. I am staying positive for Dan and my mom, but also because I know he will get through this. He goes to the dentist tomorrow. Hopefully he will not have any extractions so he can start radiation and chemo just after the first of the year. The doctors said they could do surgery to remove the cancer but they feel this new treatment protocol has more/equal success w/o the complications from surgery. He is depressed BUT ready to fight
I cannot thank you all enough for writing to me..it means so much.
I really do wish all of you the very best and a very speedy recovery. To Vickie: You are one tough and determined cookie...You will do wonderfully...I just know it.
My thoughts are with all of you, and I hope you find joy this holiday season.
Most affectionatly,
Jules