Today I woke up to the sound of snow falling ( I'm a light sleeper! )As I got half dressed I strolled into the kitchen and put the kettle on and emptied the cereal into the bowl and threw coffee into the cup! As I wash I stuck my tongue out at myself in jest! Damn I bring new meaning to the word ugly! Who cares I'm happy.As I watch Sky news while eating my cereal I can hear my dog barking outside,Oops I've not let him in again!!!
It's now 7am and time to set off for college,the bus as usual is full of school kids screaming and shouting abuse at each other and no-one has a second glance at me. As I walk though college into the refectory giving all the young things cursory glances ,stopping off at the shop for a :coffee: and a Mars I sit down to read the paper & wait for the rest of my class to join me to catch up on the weekends events.
Today is another presentation day;this where we do a talk on different topics, mine is MS and goes well with Q & A's at the end of my presentation. :soapbox:
It's now dinner time and as I order Tagliatelle & a baguette the rest of the class are already sitting down! I'm the only male in my class and face constant innuendo and harrasment,but hey someone has to do it!!
As I devour my pasta no one gives me a second glance and I laugh and joke with every-one!
After college I walk into town and grab pies & crips for my tea!( no diet!!)
Tonight ny son calls me and tells me about his day at school and asks me what I did and when can he visit me?
As I settle down for the night endless phone calls from friends mean I don't dose off till 1am.
Just as the alarm clock goes off!! I wake up and look at the scars on on my face, look at what's left of my tongue! :sigh: I have another day of people staring at me,another day of feeding by P.E.G., another day where people struggle to grasp what I'm saying!! :banghead:
Just another day!! And another dream of what used to be!!! :ashamed:


This is now a regular dream,and one I could do with out!!! I'm sure many of you go through this!

Steve, Your posting was very touching.
The same for me mate.
I wake up and after a few moments realise I am not who I was and I have to take time to get out of bed.( well it is only 3am but thats late for me)
Wheres my coffee , OH the Weetabix again dont forget to soak them first
Try not to get the milk on my jammies !!
Then phone time (I hate it)
can your hear me / do you understand what I am saying etc? yes but thats not what I said.
Well off I go to the shops top get stared at again.
Today I take the Train & Tube to the Hospital , I sit in the tube sort of chewing whats left of my tongue and as people stare at me I get worse and feel panicked so I close my eyes so dont have to look at them.
I cant even put my head down it wont go down

Well another day just the same as the rest.
But will life get better I ask ?

I swear I will hang the next person who calls me Mavis on the phone( my names nothing like it)
:banghead:

Oh dear, oh dear - I'll bet Paul knows just the sort of thing I'm going to say!!

A tongue to stick out - in my dreams.

A Mars Bar, tagliattele, baguettes, pies, crisps - such delicacies are merely fond memories.

BUT I'm still here. I can enjoy the music I like, I can read the books I've always wanted to, I can keep in contact with friends world-wide (thanks to the Internet).

What do I miss? Good food, good wines and the ability to carry on a sustained conversation - even with people patient enough to try to understand me. Even so that's better than looking at the inside of a coffin lid.

So what does it matter if some people don't want to try and understand what I'm saying? What does it really matter if some people can't cope with facial scars (mine aren't too bad)? Who knows it might be their turn next month.

So endeth the sermon !!!!

Dear (father )Pikeman, Thankyou for you message.
The congregation was most intriuged as you are worse off then most of us at least we can THROW things down our throats you do not have that pleasure
It is hard for me to remember how LUCKY yes LUCKY I am until I next visit Max Fax and see a patient far worse off than me.
Yes but when you are comparing yourself to a """normal person""" in the Street you are very diferent now.
Even if you do not actually look it you feel different inside and that unfortunatly where it hits the mind the most.
I hope you can understand that, I think by Steve posting he feels the same.
Going through the motions every day for what?

Paul

Hi Alan and Paul

I thought it was a great post by Alan - almost Booker prize material .

Paul, if you do hang someone, you have an alibi - FATIGUE, mylord?

By the way, I read the the NICE Head and Neck Guidelines. It doesn't mention FATIGUE or tiredness as an issue for head and neck cancer patients at all! even though some of you find it a problem.

You may find these links about managing the side effect of fatigue useful:
Fatigue: What a Patient Needs to Know
Fatigue

Best wishes

Vinod :coffee:

Alan.... that was a touching post.
I read it yesterday and hadn't been able to get the courage to post. I mentioned this story to my mom today and couldn't stop crying. :ashamed:
I feel ashamed of myself.. for I have been someone who can stare, and to know this... just makes me cry over how I may have bothered someone dealing with so much in their life.
You're a strong person and I want you to know how much this post means to me.
Don't feel too sad... enjoy what you have because it's still a whole lot!! Listen to pikeman !

Thanks for this post, it has seriously changed my life and my views on this whole topic. I wish you the best.

Alan's post got me wondering as to what or who Rhianon might be? A Celtic band? A mythological princess as in:

quote:

"I am Rhianon the daughter of Hefeydd Hen," she said: "my father has many lordships in the Kingdom of the Immortals. It was desired of me that I should marry Gwawl the Son of Clud, the lord of an unknown region; but I had heard a sound of the fame of the Island of the Mighty, and it seemed better to me to take queenhood here. Not pleasing to me would be sovereignty in a realm without needs or sorrows. As for the queenhood I desire to take, it will be in Dyfed. Beyond that, there is no mortal who may wed with the Immortal Kindred, unless he has first won victories in the Great Deep of Annwn, beyond the confines of the world of men."

Any other explanations?

http://www.red4.co.uk/Folklore/mabinogion/pwyll.htm

Its a Welsh Folklore/Legend