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.

WOW! Google got it so right (for once) when in frustration looking for help I searched for "best oral cancer forum on the web"!! What a lot of lovely positive friendly people you all are! I have already learned more from all of you than ALL of the medicos, RO, nurses, Dietitions, speech therapists, ents, etc etc...and I too have heard the "how long is a piece of string" after asking when will this swelling go down or when will that happen...maybe we should say that when they ask us when we intend to pay our bill!
Anyway I thank you from my heart for making me feel so welcome here. I already feel less isolated and alone!
I have another tip for you all...my most useful tips, as you will discover, seem to be always about food... probably why Im eating so well so quickly...Im a food-a-holic! hah! OK heres something more fun than mash and gravy...You will require ONE LARGE BOWL...fill it with Honey flavoured natural FULL CREAM yoghurt (well they keep saying they dont want us to lose weight don't they?)...btw, In Oz you can get a brand called Farmers Union...it is 98% fat free but tastes like full cream, im not a fan of 'diet' anything which is ONE good thing about cancer eating huh?!...if the supermarket is out of it, yoplait or ski...even nestle all do a good honey one). Now, add 1 or 2 mashed bananas (puree them in your blender if you cant be bothered 'excersizing' your poor tortured mouth/tongue)...but bananas are pretty easy to mash and mix with the yoghurt if they arent too green....and add a pinch of cinnamon (sp?). Also, when you are having one of 'those' days, stir in some extra cream (ok so I like cream). Let me tell you, it is SO soothing, cool and yummy. You can let it sit in your mouth then slide down your throat without any work at all. YUM! Of course you can use whatever fruit you like but sometimes I just like to be told exactly what fruit to put with what ..its quick and lazy!
My second tip for the day that I have to offer and for once this one isnt directly about food, but it will help you eat haha..if you have ulcers, go out and buy yourself some toothpaste with NO SODIUM LAURYL SULPHATE in it. My chemist (drugstore) sells it, so do all health stores and its the same price as the normal stuff ...you may need to take flouride tabs if your water supply doesnt have enough in it as most of these are 'natural' products and the both of mine ive tried have no flouride, but apart from that they are just like a regular toothpaste except they have one other MAJOR advantage...they arent as "BOOM-FRESH-BLOW-YOUR-MOUTH-OFF-YOUR-HEAD- MINTY" (ouch) like all the regular ones (even colgate seems to take my head off these days!).They are soft and mild (probably coz they are aimed at people with allergies i guess)..Now this may not work for everyone, but a lady told me her daughter used to get ulcers all the time until she discovered this. I have ALWAYS had ulcers before and since surgery...after ONE use, mine have finally departed and not returned! See?...still kind of about food!
Have a good day all, and I will attempt to do the same and as i think of my food tips, i will add them accordingly. Thank you all for making me feel so welcome and less like a mutant :p Love from Lyn

Hi Lyn (good name ,i gave it to my beautiful daughter)
When Rob was first diagnosed i was also told to check ALL persnal hygeine products for sodium lauryl sulphate particularly toothpaste and shampoo.

I went to a health food store and bought all Robins requirements the only drawback for me was they were sooooo expensive.


love liz

Hi again Lyn
A few months ago I was told about biotene by one of the memebers on this forum. You could have a look at the products here http://www.dentist.net/biotene.asp or google biotine on the Australian site where you will find lots of information. Am not sure about the ingredients but you should be able to find it easily.
Cheers
Gabriele

Hi Lyn,
Jerry sent me an e-mail to let me know that there was someone else from Melbourne on the board. I'm really sorry that you have had to join us ....but welcome!! While my experience has been somewhat different to yours - I have had one tongue cancer and one alveolar ridge (behind a molar) - which were both caught early and completely excised. I haven't had to have radiation or lymph nodes removed, so I can't offer any advice there. I have to say that I have been very lucky! I was first diagnosed in March of this year after having had an ulcer on the side of my tongue for somewhere between 8 and 12 months. Since I have always suffered from ulcers I wasn't overly concerned about it and was very slow getting to the Doctors. If I had known then what I know now I would have done something much, much sooner! I live down south in Mordialloc. Where abouts in Melbourne are you? I'll send a private e-mail tomorrow. Stay positive!

Sue

Hi Sue Thanks for your lovely email! I live in Mount Evelyn. Id love to met up for a coffee sometime so please email me and maybe we can meet half way (I think I gave you our phone and address) but if not remind me. You are LUCKY not to have had to have radiation...and I was the same as you with my ulcer. It was more annoying than painful but it was when I was in Alaska working on a cruise ship (Im a singer/pianist) it started to get sore. When I got home (after 4 month contract) there was a little lump there which scared the hell out of me...and then after my biopsy I was like you "if only....etc" but at least we are lucky that we have the tretments now that a few years ago we would have been dead without! Hope to meet you soon! love Lyn

Hi Lyn

what a great spirit you have !!! And the chopstick idea ..GREAT !!!!!!! This is a wonerful place ..so many wonderful people and such a plethra on information ....and unique ideas such as yours !!!! Glad you found this place !!


Shar

Chopsticks...........that IS a good idea. Welcome to our board, glad to have you.
Minnie

Hi LynfromOz,
How are you? Hang in there. I completed six weeks radiation in October, the 19th to be exact, and went through the holidays...Thanksgiving and Christmas being unable to eat... but joy of joys, I've just been able to begin eating again. I had about 1/3 of my tongue removed as well, left lateral, with the flap, but all was well defined so no neck surgery... just radiation. Just when we think we've got it the worst, all we have to do is look around and there is someone else much worse off. Just remember all things must pass, and this radiation thing is just one more obstacle that you can get through... I just found this website... God knows what I would have done had I known about it in August! Godspeed Lyn... You can do this... we're all behind you.
JB Nichols

Jenna,
How are you? And how is the radiation going? Are you almost done? I noted your encouragement to Lyn, and it sounds like we have had very similar surgeries. I know that I lost some time there and even had to hydrate at the clinic several days before tx. When I say lost time, I mean I was functional, but have very little recall of all the goings on... of course the hydrocodone may have had something to do with that. I recall the days where you are at this point as being a trial where I had to force one footstep after the next, knowing that it would all be over soon. One of the radtechs told me early on, 'it'll be over before you know it,' well it got over, but I counted every visit. T-1 was my count, meaning on the next to the last day my count was 0, but in reality I had one to go. Now, no more pain killers, but plenty of Miles 480 mouthwash, or Duke's it's called by some... the stuff really works for me. Please let me know how you are doing.
Godspeed, John