Hello Everyone,

My name is Gina i was diagnosed with cancer on the tongue in May 2004. I never smoked and only drank socially. I couldn't believe this was happending to me, but it did.

I had surgery at Johns Hopkins in Baltimore and they removed part of my tongue on the right side and all the lymph nodes on my right side and found cancer in 4 of them. They put me at stage 4. My tongue is a little deformed but otherwise normal, i was very lucky.

After recovery from surgery i had radiation and chemo. 34 treatments of radiation and two treatments of chemo, which ended in November 2004.

At this time talking is not an issue and i have gained back almost all of my taste. I didn't lose any of my teeth and so far i don't see any bone problems from the radiation. I suffer from some dry mouth and have to keep water with me where i go. Although i can taste most things the same way, swallowing is an issue for me, i assume that is from the dry mouth.

November 2005 will be one year and so far the cancer has not returned.

I guess my issue right now is feeling alone and isolated from my family and friends. don't get me wrong i had great support, but i don't seem to "fit" into my life any more. I do go to work, go to the gym and hang out with my friends again, but i don't seem to feel like i am part of things the way i used to.

And the fear of it returning is constant, granted not as bad as when everything first ended, but it is always with me. I have three doctors at Johns Hopkins, my Onologist, my surgeon and my oral medicine doctor all I still see every two months. I am quite greatful to have such wonderful skill doctors, but again how do you think of anything else?

For some reason while i was going through everthing i didn't want to talk to or meet anyone going through cancer treatments like me. I was only focused on getting through everything on a daily basis. The idea of talking to someone else like me was not something i could do.

Now after almost one year i find myself with the same group of friends i had before but no one i can write to or talk to who understands how i feel.

I hope i don't sound too whiny, i guess i just needed to get some stuff off my chest. I hope i found a place to belong to.

take care and thanks

Gina

Welcome to the Oral Cancer Foundation Gina!!

You won't find a more informed group of members on oral cancer on the web. I don't know if we ever stop worroying about a recurrance. Part of our new life's I guess.
You can ask any question you can think of and someone with similier trearment will respond. You can use the search engine at the top of the page to read some of the older postings. The more knowledge you have the better off you are.
I think you found a place you belong. It's a tight "Band of Brothers" that make up the core members of this forum.

All My Best, Danny Boy

Dear Gina,
You have already made a big step by registering as a member here and ventilating your problems with us. I can assure you that time is the best medicine and the thought of cancer recurrence will be less intense as time goes by. As long as you are well taken care of by medical professionals,you need not worry too much about your health.Your memories of the ordeal are still fresh now and your reaction towards socialising with your friends is understandable. A kind of withdrawal is rather common among cancer patients and I have once gone through similar experience after treatment. You need time to get adjusted to your 'new normal'. I find reading some inspiring and insightful books very helpful. Take care,
Karen

Gina,

Welcome to this site. I'm glad you're at the point where you can see some physical improvement -- sometimes it seems as though the recovery takes forever, but I think you'll continue to notice that it gets better over time.

I recall feeling something like what you describe when I was dealing with many of my colleagues at work after I finished treatment -- it felt like being "on the outside looking in" and wondering whether anything would ever feel "normal" again. For me, it took some time to sort out what seemed really important, but after reconsidering where my priorities ought to be, I ended up with a much better balance in th way I spend my time -- an unexpected positive side effect of the cancer experience.

Are you doing anything for the ongoing dry mouth problems? What type of radiation did you have? Do you have any medication to help with saliva? One of the things I've found helpful is Biotene mouthwash, gel and oral spray -- they're available at Wal-Mart and many of the major drug store chains.

Feel free to post with any questions you have. There are plenty of survivors here who want to help and have probably been through experiences similar to yours.

Cathy

Welcome Gina

I understand much of what you are feeling. I seem to have different priorities in life since I had cancer and although I had lots of support from my family and friends during treatment, I can't talk to them about recurrence fears etc. Somehow they think I am being 'negative'. You can freely express yourself here without seeming whiny - that is why we are all here.

This oral cancer family extends around the world but we seem to live with similar limitations - dry mouth, taste issues and our new best friends the water bottles.

Congratulations on your first cancer-free year. So glad you have joined us as you will be able to offer support and help to those still in treatment.

Love and best wishes for continuing good health from Helen

Hello Again Everyone,

Thanks for the quick responses to my post, when i opened my email and found i had responses already i smiled!

A note to Cathy: I don't know what kind of radiation treatment i had (more accurately i don't remember). I know they told me, but i have since forgotten. I see my onologist on friday i will ask her. It's hard to believe i have forgotten anything from that time. For saliva i take Evoxac 30 mg three times a day. I don't take anything for the dry mouth.

A note to Danny Boy: Thanks for including me in your "band of brothers" It feels good to belong to a group of people who have "been there".

A note for Karen: i agree about inspiration books, I like Oriah Mountain Dreamer. And i read Lance Armstrong's book, he has an amazing story. I read your note about withdrawal, it's make me feel better that it's not just me.

A note for Helen: thank you for the post, my friends do accuse me of not "moving on". They either say that or "you need to talk to us more". But it's difficult since no of them have ever been through any major health issues. So I find myself not saying anything to them.

Actually i do have one friend who is currently living with HIV. We talk a lot and it does feel good to share with someone who at least knows something of fear.

Another issue i have, i am 42 years old and not married. How in the world i am suppose to date and deal with this. I have tried it a couple of times, but again i find myself just not able to be very open. It really isn't something i worry about but i get a lot of grief from one friend of mine who thinks "i am not living fully".

Thanks for listening everyone and take care!

hugs!

Gina

Welcome Gina, I am sending you a PM, hope you are having a great day! Carol

welcome gina,glad you found us and thanks for sharing, Although my cancer type is differant cancer is cancer eh, and it knows no bounderys as we have all found out. My life has totaly changed i try not to dwell ,becaus im sure if i start i will cry for england. DIAGNOSED JAN; 2003 BREAST CANCER APRIL BILATERAL SURGERY. (APRIL 2005 DIAGNOSED THROAT CANCER),...TOTAL LARYNGECTOMY. MY BEST WISHES ..MAZ

Hi Gina,

Welcome to the group! I am in Clear Spring, MD (just a stone's throw away.) Let me know if you need to "talk". Send me a private email and I'll send you my phone number. Or if you just want an email pal, let me know. I am on sick leave for another week or so.

Warmly,
Jenn

Hi Gina,

The dating thing must be really tough. I have a friend who was in her late forties and started dating using the online personals shortly after being treated for breast cancer (she had a mastectomy) and she went through a lot of mental anguish about when she should tell someone she met, or had gotten to know a little on the phone and on email but hadn't met yet, that she had had breast cancer and only had one breast (she opted not to have surgical reconstruction from the mastectomy--she's always been fairly flat chested anyway--and so it isn't like it's immediately obvious if she's wearing a loose blouse or sweater or soemthing).

Anyway, she pretty much decided to tell men about it fairly soon if they were showing interest just ebcause she wanted to give them the option to run off if they couldn't handle it before she got too involved. But she's found several men who COULD handle it, more than she thought there would be out there and you may find the same as time goes on. You'll probably also find men out there who have their own medical problems they are worried about disclosing. If you want to date, I'd say don't let your medical history keep you from trying to find someone to share your life with. But also, don't let any well-meaning friend tell you you aren't "living fully" if you just aren't in the mood to date right now --that's also your business.
Nelie

Having been out of the "dating game" for 13 yrs., I probably should not stick my nose in here. But when I was between marriages, and in my 40's, I did date. What I remember clearly is that there are lots of things about ourselves we do not share
until a real level of mutual interest,trust and respect has been reached. If you arrive at that point in a relationship and decide you might like to have it proceed further, then you start sharing on a more intimate level. If that intimacy results in one of you backing away, you may, at the very least have gained a friend- if not the love of your life. Go for it. Amy

Gina: Hi! My brother was diagnosed in Nov 04 with Tonsil Cancer and had 35 treamtents of chemo & radiation at Hopkins which started in Dec 04. I was there every step and actually remained with him for a long time. He has been back to work and also has difficulty eating..lost a lot of weight. But about the dating thing...he says the same as you say.And I understand for dating anyway isn't the easiest. We all would love the companionship and someone other than friends and family to be there. He and I talk all the time and grateful that there are friends who are here..and maybe in by chance as he says that he meets someone in life who can be ok with it all..that he says will be another gift. In the mean time, he is blessed everyday to be here and enjoy his friends and family and the new friends. He did have a date recently and called me after to say he had a nice time and nice conversation....it will take a special person who has understanding, compassion and an open heart and soul...and I believe that person exists for my brother..as well as for you.
Laurie