My Diary --- a catch up

http://lunguk.tributefunds.com/fund/Robert+Ward+(BOB)

Hi there my family and I would like to firstly thank you for taking the time to look at our Breath of Life Fund page and would love for you to share in the memory of Robert (BOB) Ward a truly wonderful dad, husband, grandad and friend.
Now let me tell you a little about what happened to our dad for those of you who don’t know or didn’t have the pleasure of knowing him, in 2007 our dad was diagnosed with a truly terrible disease known as MESOTHELIOMA which as for any family came as a total shock to us, I remember the day my step mum rang me and told me that the doctors where testing for asbestos I said “well it better not be as that kills” but that was so far a my knowledge went on this disease, and it still isn’t much better really. When our dad was finally diagnosed with MESOTHELIOMA the hospital told him his life expectancy was 8-12 months and this regrettably to say was true he pass away 12th February 2008 he is very sadly missed but remembered daily to all those whom he touch.
When he was diagnosed with MESOTHELIOMA I tried to find out as much information as i could about this disease and whether there was any research into it what the possibilities of a cure are but with no real success my main source of help and information came from people I have met on Facebook who have been through or who are going through the same thing we did. This is why we have set up this Breath of Life Fund to try and help raise as much money as we can so that one day no one will have to go through the same heartache as us

Dear Mavis

5^th Mesothelioma UK Patient & Carer Day 2010

Date:  Saturday 2^nd October 2010         

Venue:  Novotel London St Pancras

I am writing to thank you very much for participating in the Mesothelioma UK Patient & Carer Day.  I am pleased to confirm that 49 patients, 104 patient relatives/carers/ friends attended the day plus 36 from asbestos support groups, charities etc (total 189).  The feedback received has been excellent.

Much appreciated.  Best wishes to Ray.

Kind regards

Dawn

Dawn Mckinley

Operational Manager

British Thoracic Oncology Group and

Mesothelioma UK – National Macmillan Mesothelioma Resource Centre

Hospital Management Offices

Glenfield Hospital

Leicester

LE3 9QP

0800 169 2409

www.mesothelioma.uk.com

http://www.inspectapedia.com/sickhouse/Asbestos_Products.htm

This article provides a master list of the forms in which asbestos was used, a list of known asbestos-containing materials, and links to detailed articles about individual asbestos-containing products & materials found in buildings and in a wide range of products used in both home and industry. This document assists building buyers, owners or inspectors who need to identify asbestos materials (or probable-asbestos) in buildings by simple visual inspection. We provide photographs of asbestos containing materials and descriptive text of asbestos insulation and other asbestos-containing products to permit identification of definite, probable, or possible asbestos materials in buildings. Contact Us to add items and photographs to this list of asbestos containing materials.

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http://cid-d875a91cc9e30572.photos.live.com/browse.aspx/Brean%20Sands

My holiday photos are linked here it seems a long time ago and yet it was only last week that I was still at Brean so much has gone on these past weeks –mind boggling.

I have spent the last two days glued to the computer talking to so many Meso Warriors and friends we just mustn’t let the subject of Asbestos die down.

Only today the programme 60 minute make over said the young couple had stripped the walls of  Artex—I wonder if they took all the precautions–I bet they didn’t.

My name is Debbie Brewer and 2006 was a nightmare year for my family and I.
I lost my wonderful father in the August of that year and if that wasn’t devastating enough, 3 months later I was diagnosed with Me…sothelioma.
It is thought that the three years, between 1963 and 1966, when my father worked as a lagger for the MoD, had condemned us both. He had pleural plaque and small cell lung cancer. Thankfully he would never know my story.

In 1994, I first displayed the symptoms of mesothelioma. The pain and breathlessness was disabling and was attributed to a pulled muscle, pleurisy, asthma even a blood clot in the lung.
After two years of the same symptoms and being hospitalised I decided I would just get on with it, this was me now, pain killers and antibiotics were all that were prescribed. A CT scan was suggested in 1996 but as I was pregnant with my third child, this was quickly forgotten so it was me and my symptoms for the next 12 years.

That was until October 2006 when I asked my GP for a chest x-ray. I think he thought I was crazy but he still sent me.
I was called back the day after and watched the words fall from his mouth. I may have mesothelioma. I was stunned, shocked, numbed and had to hope that maybe he was wrong.
Two weeks later I had a VATs op to remove the fluid, a biopsy was taken to determine the diagnosis.
I felt so much better after that operation and a few days later went to the hospital to see the doctor who would change my world.
I had mesothelioma, I was given 6-9 months to live, I was confused. How can this happen, I was 47 years old with 3 beautiful children, the youngest who needed me the most because he is autistic. Anger, fear, sadness, they all paid a visit.

I was determined that this was not the end. I refused conventional chemo as seeing my dad go through it a few months ago had frightened me so much – I couldn’t let my children see that.
I had radio therapy at the site of the operation and carried on with my life. My tumour, who I named Theo, didn’t progress.
2007 was an adventurous year. With my daughter’s help, I set up a website as the one thing I wanted and couldn’t find anywhere was mesothelioma from a patients point of view. Everywhere was doom and gloom, I felt I needed something more than that so in April 2007, Mesothelioma and me was born.

I also decided to contact the local media about my plight. They did some great stories, through this came a magazine article which brought a call from “This Morning” with Fern and Phil, how could I refuse? I didn’t know it yet but this show was going to be a turning point in my life.
Through that I met Pat and Tony. Tony had recently been diagnosed and was looking at alternatives; we kept in touch through email.
In January 2008 things changed, Theo was heading around my heart and it was looking bad. I was told to go home and enjoy myself and to be grateful for the life I had because I had more than some 18 and 19 year olds get.

Again, I was devastated and needed to sort my head out. I went to stay with Heather and Alan who I had also been in contact with since 2007. Alan has mesothelioma and I have always felt that being with another sufferer is the best medicine when your feeling down. They were wonderful to be with and helped me to get my fight back.
When I got home I decided to follow what Pat and Tony were doing. March 2008 I went to Park Attwood to see Dr Orange about mistletoe therapy. Then in April 2008 to Harley Street to speak to Dr Callebout about diet and this is where I heard about Professor Vogl and his chemoembolisation/chemoperfusion treatment.

With no hesitation I contacted Germany and arranged an appointment to see the Professor. This was in May 2008, Tony had unfortunately lost his life and I felt I had to follow the footsteps he would have taken as Pat and Tony had faith in this treatment in Germany.
The Professor was wonderful; even before I had any treatment I felt positive. He told me this wasn’t a cure but he thought he could help me and I had to survive as I was now one of his stats! At last, someone felt I was worth saving.

After 6 treatments with the Professor, Theo, my tumour had reduced by 83%.
My last treatment was in December 2008, 22 months ago!
Since then Theo has been stable, I have been told that I have probably got 10 to 12 years ahead of me. I will obviously be wanting more.
With every negative there is a positive and one of the positives has been facebook and the wonderful people I have met. We have christened ourselves the mesothelioma warriors and what a fantastic bunch we are.
Many are here today. I have to say a big thank you to the Professor and to the Meso UK group for this opportunity to speak and for the hope he and they have given to many sufferers some of whom can’t be here today but are with us in our hearts and minds.

From Linden ‘Skippy’ Allen, Exeter

please take a message to the Mesothelioma uk conference on my behalf – ‘I am unable to come as I am attending ‘Ride to the Wall’ in honour of my fallen comrades. However this will not stop me from thinking of you all and sending my best wishes. I am awed not ony by the spirit and determination shown by all the Meso Warriors, but also the comradeship and commonality of drive – something I thought I would only every witness in the military!
God bless you all’ Skippy. Exeter