My Meso Friend

Dear Friend

It has been a while since I wrote to you and told you what I thought it seems that you took no notice of the plea I made.

You still dominate my life and that of many, you changed our life to a normal that shouldn't be lived and everyday you seem to grow within the community of the human race.  You don't seem to hear that we don't want you within our circle of life, we hate the mention of your name and still fear the destruction you can do.

I have lost so many wonderful friends to the evil of your ways, even now your tentacles are reaching out and draining the life of many around, slyly sending your nasty cells out into our bodies, taking our life from within.

You have created death from a fibre of your being, you give no notice to those that you invade.  Your very existence was mined from the earth, a place where given the chance I would put you back, but deeper into the crust of the earth.

How do we destroy you Mesothelioma, I've been fighting you for years, my friends around the world have united in the war, we are Meso Warriors and each day we martyr another you have taken, but one day and one day soon you will be taken from the human body and shown for what you are.

Your killer cells will be starved from our bodies, your growth stumped in our lungs, your lumps stripped from our organs, one day we will be free but until then we have to hope we can last and keep taking each day with hope.

I end my letter to you, begging you to release us from your grip.  I don't want to lose my battle nor lose the friends that I have made.  Please let us find what makes you tick so we don't need to keep on fighting but can live our life in peace.  I don't want to die on the battlefield with my fellow warriors by my side, we want to have victory and be set free from your hold.

I have wrote this on behalf of those we have lost so far this year, to Ian who died this morning with his family by his side, to the Warriors who have had bad news that treatment hasn't worked, to those who have waited for trials only to find them closed.  We are united by a cancer that absorbs our lives, it takes courage from our loved ones to care for us and to know that all the efforts will still lead to them losing the person they love.  

Our lives and our families lives changed the day we were given our diagnosis, the many hours sat in hospitals, the stress of sitting outside operating theatres worrying in case we don't come through.  The trials that many try and face the unknown and sometimes an earlier death. The trauma of chemotherapy and the waiting for results.  Our loved ones may not suffer the physical pain but they suffer untold emotional pain.  They support us but who supports them?  Mesothelioma is a terrible cancer, one day we have hope then the next it is robbed.  We try to live for today but it isn't always possible, sometimes we forget we have this terrible cancer then it catches us unaware.  Always in our life, always in our thoughts.

8 years ago

Before I knew the name Mesothelioma, 8 years ago today I was starting with my usual bad neck, now having a walk in clinic at James Cook I knew when things got worse I could just walk in and see a doctor.  As my birthday looms it was that fateful day that he told me I would require to see the surgeon.  Yes I spent my 44th birthday sat in a waiting room in James Cook.  The XRay was the same as the previous month, fluid filled the pleura space and he told me I would be seeing the surgeon.  I had it drained off again that day, what a lovely birthday present!

At that time I was relieved that at last something would stop the endo or find what else  was making me so ill, this had been going on now for 4 long years, and over that last 7 months I was never without pain, my three monthly cycles had stopped. 

I remember seeing the surgeon on the 29th of July, Dr Owens, a very warm and enthusiastic man but he was direct.  He told me opening up the chest cavity was dangerous and would probably cause me more pain than what I was in!  I thought how can that be you'll cure what ever it is that is going on in there.  After all we were all sure it was endo.  So much has happened to my poor body since then.  The pain from the first surgery was bad, especially when he did a near decortication then, followed by another operation a couple of weeks later.  I still remember that first V.A.T, I was shocked when I was told I had spent nearly 5 hours in surgery, hubby was grey when I first saw him, not that I remembered much. 

You would have thought I would know better after that to then go through the next surgery in 09 to remove the whole thing.  Shame that Dr Owens hadn't done it then but who's to say I would still be here now.

I have deferred my CT Scan till August, and hopefully only get the results in September after we get back from the cruise.  I wish there was something I could take that wasn't toxic to kill this nasty meso, the thought of what I went through in 05 and 07 doesn't make my body\mind feel any better.  I know that there are a few people going through chemo now without any major problems and I truly wish I was one of them.  Seems to me those who have no bad side effects seem to do the best on remission, and I can name quite a few.

Denise is managing to carry out her normal daily life, a friend abroad is doing the same, Chris who went through chemo with me in 05 is still like an ox.  Maybe with being a few years older this time the chemo might have a different effect.

I have read that SS1P is doing so well in the States, I wonder if that trial would start up here?  It doesn't sound as toxin as chemo.  Why can't we just take a pill and be ok, like migraine or blood pressure.

I am terrified of dying, after spending a week enjoying the sun and relaxation it made me realise that life isn't just work, but even if it is it is a life I really do enjoy.  I can't imagine not waking up, but even worse I fear the end.  I know I have a long way to go yet but I am scared, I guess I wouldn't be normal if I wasn't frightened of dying.

A friend in Oz is so low and being so far away it is hard to help, her partner has the meso.  It is true us women are better fighters and don't give up so easily.  Either men give in or won't talk about it, have you noticed?  They feel they aren't being strong if they do open up or bottle it up and keep everyone at arms length.  I feel sorry for wife\partner caring for a man with meso.  I know men don't really want to talk about it, I find it hard having a conversation with my own husband, he doesn't want to talk or face the future.  I'll say are you ok if I answer no he has that look and then doesn't respond.  Maybe that's why I do this blog, it gives me a voice to air my thoughts and babbler on about everything and anything.

Lexi has gone to the vets so I had better sneak into the shower and yes, get ready for work.  Oh the joys of life!