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