good morning,
the sun is shining today in Athens. the past 2 days was really cold, at least for what we are used to, about 2C but the only snow was in the north suburbs during the night.
today i have an appointment with the surgeon to decide what we should do. i would discuss all the possibilities and the IMRT solution that i found its existence and benefits through this site. you are all so wonderful.thank you for all your concern and thoughts. hope that soon all would be only a bad dream left behind, for all of us who give our fight.

Post us after your appt and let us know what's decided.

well it seems like that after all my only hope to survive, my last chance to beat this terrible disease, is a very long & difficult surgery. i would be lying if i told you that i am not scared, or that i am ready to fight once again. unfortunately the damage has spread enough living no alternatives treatments except of surgery. i am very scared not only because i don't know if i will make it till the end, but also because i don't know what to expect after the surgery, having lost 1/2 of my tongue.I would be grateful if you could share with me any input you have regarding glossectomy and life after that. thank u all very much for your support and advice.

In the OCF Cancer Blogs forum, look for the blog by MissKate, who writes about her total glossectomy surgery and her recovery. She is inspiring. Look up her posts as well; she is usually quick to reply to questions about glossectomy.

You can also send her an e-mail or private message with any specific questions you may not want to ask in a public forum.

All the best,
Leslie

Sophia: Wish I had some great words of wisdom to lighten your load.....Just wanted to let you know that we're thinking of you and sending positive thoughts your way.
DO keep us posted as to your treatment schedule...we're ALL pulling for you and hoping for the very best...

Lois & Buzz in NC (S.E. coast of USA)

Hi Sophia-

I'm so sorry you have to get this surgery too. My life is pretty normal now though. I had the surgery a year ago.

You can do it! Its worth it to be cancer free. It is VERY difficult and frightening I know very well.... but your body and mind will adapt and heal- its pretty amazing. Feel free to write me if you have questions.

Kate

if only i knew i would be cancer free after that, i would be feeling much better. but even that seems to me almost impossible. i try not to loose my courrage but it's so difficult.
how long does it take to start talking again even if i don't speak clearly? how long should i have the peg? how severe is the pain and when i would start to feeling better? you know i have nightmares that i won't make it, it's the first time after 8 yrs of fight that i am so scared!

Well it all depends on how your surgery goes.Everyone' body and response to a big surgery is a little different. I had a tracheostopy for 3-4 weeks. I could sort of talk with that but not very well. I coudl speak better when I covered the airway of it with my hand. From there I began to swallow water- this was probably 3 weeks after surgery and then I ate a most of my meals up until midway through treatment which was about wo months after surgery- then my appetite went south when my tastebuds went dorman tand the swelling got bad for awhie. After that it took me until about a month and a half to two months post treatments to try solid foods again. It was a slow process eating again. The radiation makes everything very stiff. My radiation therapist and surgeon were all encouraging me to keep on swallowing little bits of food throughout treatment just to keep the muscles in practice so I wouldn't get stiff or get dysphigia.

Its important to at least try and swallow water before the radiation treatments start.

You will probably have the Peg tube for at least 6 months after surgery and treatments and that is on the aggressive side. You just have to htink of food as fuel during that time.
I was really hard but I did it and once I could enjoy even some liquids again like water and juice I felt so much better. You will get there.

I won't lie. The surgery is one of the most difficult things I've ever been through physically an emotiionally. Not being able to speak or eat was really hard and upsetting but I go through it and now things are pretty nor,al for me. It takes me longe rot eat than most people. I have a prosthetic which I have to take out which is kind of a pain-but not so bad. I have most of my life back now and its going to be a year Marc 2nd. Once you get ove rhte major hurdles and get into a healing and improving phase it starts to get exciting-- espeially after you've been sick for so long. You'll see.

I know its very very.


My heart goes out to you Sophia. You have family that can help you right? Its very very hard but not impossible.

You can do it!

K

Thank you very much Kate for all the support & the advice. i wish you every year from now on to be a celebration of being cancer free & healthy. Thanks god i do have a family, that supports me through these difficult period but you know i don't want to be a burden. as i have two wait 2 weeks or sotill the surgery i am going to have some chemo first, in order to try to stop its expansion to near tissues. hope that it will work!
hope for a miracle to happen!

I'm praying for you Sophia- I want you to get all better!!!!

You are not a burden to your family. Don't even worry about that. I know its hard-- I felt the same way but try not to feel guilty-- save your energy for fighting through this...They love you and you will do anything for you I'm sure.

When do you start chemo and when is the surgeyr?? I'll say some prayers for you. Just go in with a strong mindset and keep your mind distracted from bad thoughts. Take very good care of yourself!!! XOXOXOX Kate