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Members Input

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Dear Christine

I actually found out that the Basal Cell Carsinoma had not all been removed during my first operation in 2004 on the day we moved from Oxford to Wick in February 2007!

Since then I have had 2 further operatios, one in Oxford and the exenteration at Moorfield's last July.  I am just hoping that the histology is right this time and they have finally managed to get rid of it all.

After reading Elizabeth's letter I found it very emotive and brought all sorts of dormant feelings to the surface; so I ended full of mixed emotions.  She has been through far more than I have, I was so lucky not to have to have RT, and the only graft was from the inside of my mouth, painful at the time (2nd major op, nearly 2 years ago) but almost forgotten now as I can eat and talk normally again.  My socket is also healed over as my upper eyelid was unaffected and there was enough to pull down to meet the top of what was left of my cheek.

 I was really impressed by Elizabeth's descriptions of how monocular vision really is; each one of the descriptions rang true for me, the jumping at shadows and tripping over the ground in particular.  I couldn't have put it into words as well as she has, and now I know that it may feel like that for some time to come.  But I still hope and expect that monocular vision will come to feel normal to me, I'm not quite there yet!  Elizabeth was told it would take 12 months to adjust.  I was told 3 months.  Who knows how long it takes, and as Elizabeth says, what is adjustment?  Adjustment doesn't mean that it will be back to how it was before, we all know that is never going to happen.  What I do realize now is that everyone reacts and responds differently; and it's not necessarily a controllable, conscious thing. 

It is good to have a counter balance, someone living their life with their friends and family, but acknowledging that everything is not rosy and definitely not easy. 

Too often the people you are told about are those who have achieved at the highest level, you don't hear about those of us just doing normal jobs or living normal lives with what my husband describes as 'modifications'.  That's where Let's Face It is so available.

I sometimes feel almost under more pressure to 'be fine' when asked at work, so I am reassuring everyone else, and not admitting that I might not be performing at my best or to the standard I previously achieved, since losing my eye.  That said almost everyone has been very supportive, they seem pleased to have me back!  Now it is up to me to decide if I let this 'modification' impact what I do, I do know it has made me more appreciative of my family and friends, so there is no doubt that my priorities will be different in the future.

from Liz

 

Dear LFI Friends,

"Underneath my disfigured face I am a normal person and I have a tough time talking about it.  I think the fact that we can not talk about it (facial disfigurement) often denies us the opportunity to be "normal".  Just talking to another disfigured person has helped me a lot".

From: A friend of Let's Face It

 

Dear Christine

Congratulations on a perfect presentation today at the Kent & Canterbury meeting.  As a mere Laryngectome, with only the human voice missing, I felt a fraud amongst people who have had so much reconstruction work done to their face!  However, I did promise you some poetry, so I send you two recent ones:

THE PRETENCE

The mask we wear, that smiles and lies,

So hides the tears, that's in our eyes.

We practice hard, with inner guile. 

With torn and bleeding heart, we smile.

 

Why Should we show them otherwise? 

Why should we let them hear our sighs    

Let them not think, or dare to ask, 

That this our smile is just a mask.

 

The voice is one, but we are  here,

And gone is that once dreadful fear.         

The mask will vanish, just like a pain,       

And once more, we'll smile again.

by Len A Hynds

And now a change of pace...Robin , one of the laryngectomees there today, is a dairy farmer, and in our club at Ashford I get asked to write a poem about each member in turn (all in fun), and I did this one for Robin, which was read out by his wife Jill.

THE FARMERS BOY IN LOVE

They strolled down the lane together,

The night was full of stars;

They reached the gate in silence,

He lifted down the bars.

 

He opened the gate and helped her through,

With his arm around her waist.

With loving thoughts, 'neath that sky dark blue

Quite trembling in his haste.

 

Neither smile nor thanks, but looking coy,

Because she didn't know how.

For he was only a farmers boy

And she was a dairy cow...

by Len A Hynds  

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