Hi everyone Im Lyn. Im from Melbourne Oz. I was diagnosed with fairly severe tongue Cancer on Nov 16th and operated on (losing 2/3 of my tongue, 34 lymph nodes, 4 teeth a chunk of my wrist to make a new tongue and a chunk of my thigh for a skin graft to cover the new tongue chunk. I also lost a nerve from ny wrist to my elbow which replaced the one that made my old tongue move.) on the 19th Nov (yep 2007) Starting on the 31st Dec 4 days after my 46th birthday, for 6 weeks straight (5 days a week)of radiotherapy (happy Nuclear year! huh?!)
A flap was made to replace the chopped off cancerous bit of my tongue and although I guess it could be worse I am VERY sad and lost and feeling like a mutant. I can talk...with somewhat of a speech impediment (its worse in the morning) as most of you will be familiar with..but the most annoying part for me is...I am..no..i was...a singer and a pianist. I worked with My Husband Kim on Cruise ships, local ferries and around town at functions. Thats over now. Im in shock....we both are. Our finances are in shock and i HATE where I am right now (sad)...so here I am...I googled "BEST ORAL CANCER FORUM ON WEB" and was brought here. Any advice, ancouragement, help, friendly (and not so friendly if i need them! haha) kicks to get me motivated etc are welcome.
As I lost four teeth and had stiched under my chin where the 34 lymph glands, my neck is still quite swollen and tight...will this go away anytime soon?...Can someomne tell me?...what have I got to look forward to in general (apart from living)..positive only please at this stage...eg...will my lisp get better? (i sound like a i have a golf ball in my mouth...will my tongue swelling go down more? will i ever be rid of this cancer or will it keep coming back (i keep reading there is a 50% survival rate for oral cancer at the 5 year mark). Im only 45...so is there a 50% chance I wont see 50? Hard questions..so I just thought after saying hello I'd tell you where Im at right now.
If I can help ANY of you...PLEASE ask. Please. If you have no one to talk to...you now have ME...a net pal from Down Under. You are not alone.
Thanks for letting me join this forum. I need this...I have so many questions. Im scared. But...as someone put it...Hey, its just an experience and life isnt boring at least haha!
I hope to talk to lots of you and hear good things...and i will do my best to see if I can support you through the not so good!
Love to you all Lyn
PS I thought Id give you a little "hello" gift as it is my first time....one little thing that you have probably all figured out by now is..BEGINNERS plastic chopsticks are lifesavers as far as eating goes (esp in public!) you can put the food in the most comfy place in your mouth after you chop it up to the size that suits your mouth/teeth/tongue/jaw best!...MUCH cooler than teaspoons! huh?!.

I understand where you are coming from Lyn, I think most here can answer better than I can. I lost part of mt tongue and had my neck cut too. I have the lisp that makes me sound funny and have people always asking, " what did you say" LOL I do a lot of repeating. I had my surgery the 3rd of Aug. and still have the tongue and neck problems , but they will get better given time. I hate not being able to lick my lips when eating too. LOL I can feel your pain and will pray for you in church this morning. Jim

Hey thanks Jim...maybe we can listhp a prayer for each other together this morn and God will get the message even if He can understand us...we need Him to make others do the same! haha cheers Lyn

Hi Lyn,

It's still early here in the US and weekends are a little slow, but you'll be getting some helpful hints and answers soon. I love your sense of humor, but I wouldn't expect anything less from an aussie. I spent a little over 2 weeks in Australia this past February and have developed a deep affection for Oz and it's people. I did visit the "other" island, but we won't go there. Just kidding, of course, I really enjoyed both and will always have fond memories of that special vacation.

Although my experiences were different than yours, I can address the neck issue. It WILL get better. You should be doing exercises and you should know about lymphedema. The exercises were given to me by my physical therapist who was also a lympedema specialist. There is a great deal of information on the site about any issues you might have, so learn how to use the search engines by reading the first forum with Brian's post.

BTW there are several members from Australia and one from Melbourne in particular, that I know of. I just sent her an email to let her know you are here and asked her to look you up on the forum. While in Sydney, I met and had dinner with another member who lives just outside of Sydney. I'm sure you will be hearing from some of them soon. If you need some inspiration about returning to work after surgery like yours, I have a friend (also an OCF member) who returned to motivational speaking after a similar situation that you find yourself in. Check out www.evagrayzel.com

Never saw anyone write about the "chopsticks" idea in the 2.5 years I've been here. sounds like a very helpful hint.

Good luck and I hope you are feeling better soon.

Jerry

Lyn,

A little helpful hint. I noticed that you posted some more questions in someone else's thread. Your questions will possibly get lost there. It would be best if you start your own thread. You will get more attention to your questions this way.

Jerry

Lyn,

I was/am one of the "fortunate" SCC cancer victims as I didn't require surgery even though I was Staged a IV. I can't begin to imagine what you have been through nor what physical and mental challenges lie ahead but there have been plenty similar to you on this site since I've joined and I'm sure as Jerry says you will hear from them shorty.

That said, I can assure you that you have found the best possible site to get you through this and my bet is that we'll be celegrating your 50th BD in no time.

One thing that my cancer experience has taught me is that the mental part of this ugly disease is 50% of our battle so please accept what's done ASAP and look positively towards your new life. In no way am I discounting your physical challenges nor the Tx that lies ahead but the more positive you are now, the better everything will be. I guarantee it !!

This site will be with every step of the way and soon you will be posting to help others.

Dear Lyn

I am sorry that you have had to go through so much in the past few weeks. It sounds like you are managing well, the chopsticks idea is fantastic - trust an aussie to come up with it.

You will find the radiotherapy technicians are caring as well as competent. They will help you every step of the way. The actual radiation doesn't hurt at all although you will probably feel tired after a couple of treatments. Your sense of humour will help.

You have found a wonderful source of knowledge and support here. We understand what you are going through both emotionally and physically. Ask away and people with similar experiences will help.

Lots of love from Helen in NSW

Hi Lynn,

I'm the one who had dinner with Jerry and his wife in Manly, Sydney !

I'm glad you found this site, it's the best in the world with fantastic people and loads of helpful advice and information. Radiation, as Helen said doesn't hurt. I continued to work all through my treatments, otherwise I'd be bored! And I also found the staff to be wonderful - I quite enjoy my periodical checkups, just to have a natter with them!

I hope new clinic in Melbourne, the one sponsored by Olivia Newton-John, starts construction soon, if not already. It looks very nice, a "Well Being Centre".

Good luck, and always ask questions.

Tizz (aka Meredith)

(I'm also in the music industry (audio engineer), < www.soundwarp.com.au >

Hi Lyn
I received an email from Helen to let me know that we had another Aussie on the Forum.
Have been in contact with both Helen and Tizz (Meredith) for a while now and hope we can meet soon. This has been via email and I know I should use the forum more as it can benefit others.
One of the worst things about this is the not knowing how long things take to improve and when I asked earlier and the doctor replied

Hi Lyn,

My surgery sounds like it was pretty similar to yours. I had about 1/2 of my tongue removed and then reconstructed on 10/22/07. I started radiation on 12/11. So far it's been fine, but from what I've read, I may not feel much for a couple of weeks. I'm being optimistic about possible side effects. My mantra during treatments are "no side effects"-which my RO found amusing. Hey, it's worth a try. It sounds like you're eating which is a good sign. The first 4 weeks following surgery were very frustrating,I was so tired of pureed soups,etc., but every day since I've noticed some small improvements. I'd never thought of using chop sticks. That makes a lot of sense. Thanks.

Speech issues have been very frustrating. I started speech therapy, but it's very slow. I'm looking forward to regaining what I've lost.

ANy questions you might have, please feel free to ask me.