Wednesday, 12 January 2011

Raising awareness of mesothelioma by sharing experiences

A few days ago I had an e-mail from Mavis who was diagnosed with mesothelioma around the same time as Steve and, like him, is still fighting the disease and making the most of life. Mavis's blog (and her book based on the blog) is followed and read by the TUC and many others around the world, so we were honoured when she dedicated her entry of 9 January to Steve and Doing Something Positive.

I am taking this opportunity to raise awareness of mesothelioma by dedicating today's blog to Jan, who has been living with the symptoms of mesothelioma since the late 1990s but wasn't diagnosed until 2004.  Jan is another inspiring meso warrior - you can read her story by following the link on the right under "We are not alone"

Last Saturday Jan posted "A letter to meso" on her blog - a very honest and moving account of how it feels to live with the disease.  I have reproduced most of it here as her own words are far more effective than any summary I could attempt.  Please read on, but take a deep breath first.....
Dear friend 
How long have I known you intimately for now, 6 years coming up 7?  We have certainly seen some battles you and I.  You have taken me to near distinction and others have brought me back again.  Our lives have affected others as well as each others and all the time its a battle of nerves, who can outwit the other. 
Over these years, more recently the last 4 I have come into contact with some wonderful people because of you, and I have also lost some wonderful people to you.  You have brought destruction and despair, pain and unhappiness into so many lives and yet you are still here, still residing where you aren't wanted.
The effect you have on life is so hard for others to comprehend, you are hidden away with no outwardly signs, you slyly and slowly sneak into one's life and by the time you are noticed you have already caused unwanted problems.   I,  for one, have been fighting with you for 10 full years, albeit I could only put a name to you after 4 of those years.  The pain you unleashed in the early days was bad but at least you gave me breaks.  Over the last 6 years you have been unrelenting with unleashing pain;  you find ways of making my body hurt.  Even in sleep you still hold your power of pain over me.
Some of those you have touched have been spared with pain but suffer in so other many terrible ways.  You leave no one untouched when you become part of some one's life. 
You inspire some wonderful doctors who want to discover your secrets and rid us of your presence and then there are some who ignore your very existence or find that dealing with you to troublesome and prefer not to deal with those you have come into contact with.  Oh yes, I have met both sides and so have many others, but you don't understand the determination of the human race and we will beat you, one day you will no longer exist......
...I hope that this New Year will bring compassion into your being as just the mention of your name brings fear to all those that hear it.  Today more people understand the name you are know by Mesothelioma; more are aware of your hiding place and, more importantly,  people are trying to find your secrets of life so they can eradicate you from our lives. 
For me I guess I'll have to struggle on, but be aware you are never out of my sight and I will always try and outwit you.  You have worn me down, made me old before my time, tried taking away my life.  Even today, as I am tired and weary from our fights and from the pain, I will not let you win.
I am watching you.

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