Paul (David),

On occasions when I am feeling 'down' and full of self pity because of my condition I look up the stories of the condition of others, particularly yours.

From these I see the tenacity and courage that fellow suffers, far worse than myself, face up to this scourge disease. Thereafter I remain humbled but encouraged to fight the menace. For that I thank you.

Regards, Fridge

Hi fridge, Welll dont have to be humble towards me
I say it as I see it and say on the boards what I want to say not what people WANT to hear.
Its no pinic at all mate.
I battle on but sometimes wonder why/
My life is so differnt now and the worst thing at the moment is looking far older than I am and people assuming I am deaf as well.
Had two really awful experinces of people looking and telling me should not be let out on my own
what time the zoo close
When Ii tell my friends they say people are not staring at me but YES they do and theres no paranio on my part.


Paul

Hi Paul
What a horrible experience for you, just tell yourself that they can't help being pig ignorant!Yes people do stare, but our whole family just stare back at them, sometimes children have asked questions & we're happy to explain, we've found children to be much more accepting than adults. Joshua, our 9 year old, regularly brings his friends to talk to his dad, & they are all very impressed by Paul being able to blow out of his neck!I think a lot of it is fear, Paul has had only one bad reaction so far, from a shop assistant, & I sent such a nasty letter to the shop manager that he phoned me to grovel as soon as he got it, so hopefully she will be more understanding next time. Just remember your real friends & family are happy to still have you no matter how different you are, you are still you
Jennie Sankey

Yes point taken Jennifer, But I cant go round London explaing to everyone that stares at me
Its very hard to go from looking normal to loking like a freak
It also brings things like people also think I am deaf he he
When I try to make conversation I am usually snubbed as WEIRDO and its not geting any easier infact as time goes on and I feel a bit more confident in myself I feel the rejection more.

When I go out it is usually alone if I waited for someone to come with me would be a hermit by now.
My family (whats left) live a long time away and I live alone.
So guess the circumstances are different

Paul

Hi Paul my name is Tracey i am not a sufferer myself however for the last 4 months i have seen and shared this horrendous experience with my husband Brett who was diagnosed with stage 4 nasopharyngeal cancer Sept04. This disease has changed my husband and my family dramatically.

HI Tacey, Yes its unfortunate my family and friends could not cope
I am left with two good friends and a really wonderful Max Fax Clinic who are great.
BUT I do have some true friends this site Vicki, Pikeman and the like.


Paul

Hi Paul
sorry I wasn't trying to trivialise what you are going through, we have lost a lot of friends, but also gained some new ones, guess they are the ones worth having. Are there no support groups through the clinic?, or maybe you could set one up, you can't be the only person in your area in this situation, maybe social services can suggest something. I always thought they weren't very good, but our social worker has been brilliant, she's done everything she can to find anything that could help us, & Paul finds it helpful to try to live as normally as possible, causes a minor sensation in the pub when he puts his bacardi & coke down his peg tube! A lot of people are supportive once they've got over the hurdle of accepting your differences, please don't think of yourself as a freak.
Jennie

Hi Caroline, I did not mean to come across like that I am sorry.
I go to a cancer group once a month at the Max Fax but its alot older people and their outlook alot different to me.
I went to India with my peg in but must say the local people were cool the Tourist the problem he he mind yuo they were usully drunk anyway.
Well in London its hard to make friends best of times.
Social Services well would yuo belive they said to me want to go to a day centre!!!! I sohwed them the door .
I aam nbot old or infirm or maetal I told them.
I asked them aboutt he Physi
o for my neck & shoulder but still waitng 2.5 years later
I am going to America soon and to be honest scared stiff of the journey alone but staying with some great friends(Vicki & Ric) who understand what I am going through so I am really looking foward to it, Well I will when I get on the flight lol


Paul