Hello,

i come to the site to read only, it keeps me feeling connected to the people who understand what i am going through.

I was first diagnosed three years ago under my tongue on the floor of my mouth and in 4 of my lymph nodes. i had surgery, radiation and chemo. Right after i started back to work my closest friend of 15 years started get sick from AIDS, he had been battling the disease for approx 16 years. I immediately started taking care of him, running errands, doctor appointments etc. I could concentrate on him and not think about my own disease. In March he lost his battle and the grief was enormous. it was the first time i had lost anyone close to me.

Well in October of this year i found a spot on my inside right cheek. After a biopsy it turned out to be cancer. a new primary (not a reoccuranace so i am not sure i should post here). I had surgery to remove it and now they are talking about putting me in a Erbitux study happening at Johns Hopkins right now.

I don't really have a question, but without my friend to talk to i am left feeling isolated from my family and friends. My friend was the one who understood what i was feeling. he was also the one who could handle my emotions and fears and wouldn't shy away when i needed to vent.

It was so hard to face cancer the first time, how am suppose to handle it again? I don't sleep very well and i am constantly thinking about cancer. I am always holding my fears in and trying to keep my emotions in check (hard to concentrate at work when my mind is constantly filled with fear).

I stare at his picture and try to think what he would say if he could. How do i handle all this and enjoy my life as well?

thanks for letting me vent.

gina

Gina: Keep posting...keep reading...keep asking questions....there are those of us who genuinely care about you and the fears that you are facing. I'm so sorry for the loss of your friend.

You can DO this! You won't be alone...we're all in this together.

DO let us know of your treatment plans. We'll be thinking about you and hoping for the best!

Lois & Buzz in NC

we are here for you Gina! Try and distract yourself with books movies and htings that you love so that you aren't fixating on the bad scary thoughts. xoxoxo Kate

Gina,

First of all, I can relate, and am so sorry for your loss. I know this sounds strange, but if I had never experienced the loss of several close family members before my husband's recurrence, I don't know that I could have handled it as well. You are in my prayers.

Please know that you have friends here who are more than willing to help you during this time.

I'm sorry that you don't feel like you can confide in your family, but I totally understand. Like you, our families are pretty much engrossed in their own self-inflicted, petty dramas, and can't bring themselves to help during this time. Not to imply that this might be your plight, only to say I understand how hard it can be to rely on those that should be there for you.

Please let us help. Keep us updated, and know that there are people here who feel for you........even if you can't hug them in person.

Love,
Mandi

Gina, Unfortunately cyber-friendships aren't quite as good as real life friendships. We can't throw our arms around you or cook you dinner or go with you to your doctors appointments. But people here do know that fear you're dealing with, we can support you and listen to you and make you feel less alone.

I'm sorry you lost your friend, obviously no one could subsitute for a friendship that close. But I have found the support I got here has made me feel much much less alone.

I hope you come back here as often as you need to and talk about whatever is ine your mind. You don't have to be brave or unemotional here. Just let it out.

Nelie

Hi Gina,
As one who also had a new second cancer, I can relate to your initial fear. However, once I knew what it was, how it was going to be treated and received the good news that they had it all, I stopped worrying about the cancer and started worrying about how to live with my new trach and TEP and how to get better so I could go back to normal living. If it comes back a third time, I'll deal with it then, but in the meantime I don't plan to waste any time worrying aboout it.

You need to concentrate on what you need to do to get better and that also means sound sleep. Do things you like to do that relax you and take your mind off cancer, take a walk, read a book, go to a movie, a concert, out to dinner. I know losing your best friend doesn't help. I lost mine 9 months after my first diagnosis to cancer. Come here to read and post your fears and feelings. We will try to help you. You CANNOT let this disease rule your mind.

Take care,
Eileen

Oh Gina Sweetie, I wish I could give you a big hug! I know what you are going through as far as the second cancer. I really felt I had it kicked when I reached my 5 year mark in May, but alas I was diagnosed with second primary on soft palate November 10, I am having surgery 12/14....and I am SCARED!!!!!!!!!!!!!Scared that it is back!!!!I wake up thinking it was a nightmare, but it is not, I live in Baltimore, I am going to Univ of Md. for my surgery. You can email me or pm me whenever you like.....I am sending our a BIG hug to you!!!!Take Care, Carol p.s. there is a commercial on TV where a younger woman is shown getting radiation, etc....and the words at the end are "I Have Cancer, but it does not have me", we have to focus on that.

Hello Everyone,
thanks for your posts, they make me feel less alone. It's not that my family isn't here for me actually they are incredible. my issue is letting them know how scared i am, i don't want them to worry more than they already are. My mom and my sister hover over me all the time, worrying and trying to do everything for me. So i act brave and tough and try to get them to stop worrying.

One of the best thing about my friend who passed away was i never had to say anything he always knew how i felt. My other friends are wonderful as well, but they can't begin to know how i feel.

Like i said at first i come to this site all the time to read the posts and remember i am not alone and there are other people who are going through what i am.

Right now the only treatment plans for me is to go into the Erbitux study if in three months i have a precancerous lesion. In the meantime i go to my surgeon at johns hopkins every month until something shows up. So now i find myself with my little flashlight constantly staring at my mouth (even at work in the ladies room).

In the meantime i am using a device called a dynasplint to help with my Trismus. I can't open my mouth very much at this point and eating is difficult.

Carol, i know that commercial you are talking about and every time i see it i get mad at myself for letting my fear control me. Honestly it was easier to deal with the fear the first time. The second time around i am finding it harder to get back on my feet. Now I am not going to give up but dealing with my fear has proven a lot harder this time. Carol you are in my thoughts, I will be sending you good thoughts and my love as you face your surgery and the return of your cancer.

Sunday is my birthday i turn 45 and my plan to celebrate in some way that i have reached it. I will see my family and a close friend, but i am trying to think of something i can do alone. Even if it's just sitting and mediating focusing on my blessings and my accomplishments.

I will go to sleep tonight feeling all of your caring and warmth.

thanks.
gina

Gina: May I be the FIRST to wish you a Happy Birthday! (early...)

We are thinking of you...glad you can 'feel' our hugs and positive thoughts...

Lois & Buzz in NC

Gina,

I'll be the 2nd to wish you an early happy birthday!

I'm glad you are at Hopkins, seems like they are always in a forward spot at treating this darned cancer.

My husband was on Erbitux, if you have any questions should you go that route, please let me know.

Great big wonderful healing thoughts your way!