hi everyone,

it's 8 days until i have my surgery to remove what i think now will be at least 60-75% of my tongue, and 5 days until i start a combo of radiation and chemo. i'm really starting to freak out about it.

the worst thing is that my tumor has rapidly progressed in the past 2 weeks. i now have an ulceration that takes up the entire side of my tongue, and am on painkillers 24/7 to cope with it. i also can tell that the tumor has been growing because i am rapidly losing the use of what was left of my tongue. this has caused me a lot of trouble with eating/speaking and swallowing.

i would love to hear words of encouragement from anyone out there. this is getting really hard for me.

thanks for letting me vent.

When my mother was diagnosed the tumor was not very large. She had a neck dissection followed by radiation/chemo. The time between the surgery and the radiation which was only a couple of weeks the tumor seemed to get large very fast. It was noticable when she talked or laughed. The radiation shrank the tumor so much they thought it was gone. She had to have a portion of her tongue removed later, because the tumor was not completely erradicatied by the radiation. She had a lot of surgery in February 2002 which included her jaw and the floor of her mouth. She recovered and is now back home and is self-sufficient. It has been no picnic for her, but at 79 I think she is glad that she had the surgery and is able to talk and eat pureed food. She is even driving to the hairdresser, church and grocery store again. It's definitely a tough road, but you will be amazed at how fast you spring back after surgery. Best of luck and many good wishes on your recovery.

Nettypoho,

Hang in there kid. The waiting was probably the worst part. It is becasue of the unknown. I didn't know if they were going to take 1/3 of my tongue to over 1/2. Were they going to have to remove my entire jaw bone and so on and so forth. Once your surgery is over, then you will know what you have to deal with. And I'm not going to kid you that is hard too, but you can do it. Take it slow and if you have any take a couple of Xanax or something of the nature before you check in. That was proably the best advice I was given, I wasn't freaking out and I was fairly calm. Also, have faith in your Doctors, that was one of the most important things that I found out. When I was waiting to go into OR everyone asked who my Doctors were. When I told them, they said that I had the best oral cancer team in the state. Take care and vent and panic all you want on this board. That is what we are here for.

Anne.

Nettypoho,
Many prayers and positive thoughts are being sent your way.....keep the faith. We will be routing for you. Keep us posted, and keep a positive outlook.

Before her surgery, my mother was scared and her doctor (and the person at the anesthesiology consult) said she could take xanax up to and the morning of her surgery. Xanax kept her going and also allowed her to get a night's sleep before surgery.

I sometimes think doctor's forget about helping with the patient's anxiety because they have been through similar surgeries and are confident of their abilities and the outcome. You, on the other hand, are thinking the worst...or worst than that if that's possible.

Xanax took the edge off my mother's fear. I took one too the night before the surgery so I could be as calm as possible for her.

Someone else has already said it...the waiting is the absolute scariest time. Once the surgery is over, you will know what you are dealing with. As you can see from the survivors who write on this board, we all have within us more strength than we know. You will be able to count on that strength when you need it.

As a caregiver, I have found that writing in my journal has helped me deal with my anxiety. If you don't already keep one, you may want to start so that you can get your fears on the page. Giving voice to them sometimes helps defuse them.

Good luck. We will all be waiting to hear from you after your surgery!