Hello Everyone!

I've been reading a lot of stories on this website and have found it the most informative yet!
As with many memebers of this site finding information on Oral Cancer is like the perverbial rocking horse s**t! Many don't cover it and had various replies saying not enough people have it! Sorry but if 4,000 people contract and up to 50% die from it! If thats not suffiecient I don't know what is!
All the attention is focused on breast cancer and that is wrong! Perhaps that its mainly a womens disease and everyone listens when a womens angry!!!
Anyway about me I was told I had cancer in 2002 when I was 34 and spent my birthday in ITU and everyone wished me a happy birthday! My answer was curt!Everything was going well untill in April 2003 I was told the cancer had been more aggressive than anticipated and caused more damage than 1st time around! So another op.,another new """Flap""" ( no-one knows why it's called that! I prefer transplant!) and a bone graft from my arm! Which has really improved my looks!!NOT!
I'm not doing radiotherapy,I have a P.E.G as I tend to gag on solid food and can't chew properly!
People can be hurtful! Stares and fish impressions are an every day occurance! And what happened to you neck! ( Add expletives anywhere!!)
Without Macmillan nurses I'd have been taken by the men in white suits long ago! These aren't nurses they're friends!!
At the moment I'm back in H/E on the long road to becoming a nurse!
My main motivation is my 5 year old son!Every time I think of emptyong a bottle of tablets I look at his picture and think why should he loose out!

One last thing! I tried getting blue ribbons from dentist's and they were clueless!

A interesting story is on the Ben Walton trust website! This story tells you why you musn't ingnore a pain in your mouth!

Hi Alan, welcome to our site.

35 is, I guess, young to be hit. As yoy say though you've got a youngster to focus your mind on beating your """visitor""".

You don't actually say where where your cancer hit. As for info, well our resident doctor is absolutely fantastic at both giving you into or steering you to areas where you may find help. He's also got a sneaky sense of humour.

Don't know what happened there.

Anyway, really interested to note Alan's comments re. breast cancer. I've moaned on about this myself, and this despite my wife having had breast cancer.

PEG feed, well I'm on that full time can't take any solid food so I get 99% of my nutrition thru' the tube. That'll be case 'til I turn my toes up.

The plus point is that I find it easy to regulate my weight, mknimum 1500 cals. per diem, max 2000. Easy peasy.

People staring and stuff, well screw them. Just think could they cope with what you're dealing with. Pity them for having no compassion.

Now I'll go and find the Ben Walton site you mention.

Keep plugging on, and keep us all advised.

Oh yes HAPPY NEW YEAR

Hi Alan, Well been there done that got the T Shirt ect.
What do I say mate I was 42 and hit me like a ton of brick and the after effect are horrendous.
You can mail me anytime with any questions I will try to answer.
Your the first guy in my age group(well nearly)that I have come across.
Have to make do with the Cancer Group(knitting circle)at the UCH but dont go often.
My story is DB's you might find many simalarities.
What can I say mate I feel for you and your
family.At least you have them around.
I went to the GP last friday and had to see a different one to my usual
she said to me """I will only give you a weeks supply of tablets as you are Depressed and might take them all"""
I said""" If you can get a bottle of tablets down my throat your a better man than me!! """
Well I have to make light of it mate or I will crack up !!

Hope to hear from you.Keep comming back to the boards they are very usful
But Dr J, dodgy dont listen to his jokes
Bye

Paul

Hey Paul

I thought you said the joke was funny !

Anway, you were the one being watched by the people in the submarine

Best wishes

Vinod :coffee: :coffee: :coffee:

He He :lol:

Hi Alan,I have just read your letter again .
I am AMAZED that you had no Radiotherapy ??
That is what did my voice in and the loss of part of my tongue.
Did they tell you why no Radiotherapy?
Did you get Cancer in the neck ?

Paul

hi alan, paul et al,
I realise that we all private message each other so maybe the """why no radiotherapy in alan's situation""" question has been addressed elsewhere. I'm very interested to know the whys and wherefores of 'radiotherapy or not' so I'm starting a new thread on the medications, treatments forum of the board

For everyone, :soapbox:

The explanation I was given for not recieving radiotherapy is as follows:

As it says radio therapy are radio waves transmitted through the head and only used on the head!My cancer had only originally affected an area of my tongue and not reached any other part of my mouth.It was feared that my lymph nodes may have been cancerous and I was referred for a CT scan and this was unfounded and my radiotherapist Dr.Dunlop explained the following reason for not been given radiotherapy: It can eradicate cancer intially,but there's no guarantee it get all infected areas,and would therefore need surgery to remove it! Also radiotherapy could make the bones in my mouth very brittle as it kills the bone marrow. So even if I had it and not worked the operation my cause breakage.

Apologies forany errors in explanation, anyone who sat in a room full of medical staff and still trying to understand they've been told they've cancer, doesn't quiet take in every detail!

Apologies to Dr.Joshi/Dunlop if I've got anything muxed up!

I think you are lucky in a way Alan not being unkind.
The Radiotherapy is the cause of all my problems now.
The actual operation was a doddle to what I am going through now.

Paul