Posted on September 2, 2019
This week I had the pleasure of interviewing Paul Cook, the co-founder of Erase Meso. In this interview, Paul shared his personal experience about his mesothelioma diagnosis, treatment and wonderful new organization. Paul, his family, and Erase Meso team are making change happen, one mile at a time. ~ Linda
Linda: Please tell us a little about yourself?
Paul: My name is Paul Cook. I’m now 45 and I live in London, UK with my wife and seven-year-old son.
I was 43 and fairly fit when diagnosed with mesothelioma. My hobbies were all active – kitesurfing, skiing, golfing and cycling.
I caught a cold which turned into flu and then pneumonia which is when my lung collapsed.
On November 14th, my wife Jill and I went in for a routine check post the operation to re-inflate my lung. This is when I was told that I had mesothelioma and there was no cure.
I was fortunate enough to have amazing medical care and given life-saving surgery, 6 rounds of 3 types of chemo and radiotherapy. I was left pretty “broken” by all the treatments but started physio as soon as I could and have been training ever since then.
I’ve been in remission since summer 2018 and I am grateful for every day.
Linda: How did your mesothelioma diagnosis impact your life?
Paul: I had to sell my business, I am in constant pain, still forget things post the chemo and there are some basic things like running I cannot do anymore. My poor wife and son have had to watch me go through some pretty low moments physically. The biggest issue is psychological as having mesothelioma weighs on your mind…any slight pain, sneeze or anything which most people would not think about makes you wonder whether there is something more sinister.
On the positive side, it also made me re-evaluate what is important in life such as spending time with my family and friends (not to mention going on holiday and traveling as much as possible)! I find that things which I previously found stressful really do not worry me. You also realise that life is precious and you need to make the most of each day. Ironically, I am also fitter now than I have ever been even though I am missing part of my lung.
Linda: What are your Erase Meso goals and aspirations?
Paul: To raise awareness of mesothelioma
To raise research funds for mesothelioma
To provide hope
Linda: Why did you create Erase Meso?
Paul: My wife and I believed that if I survived we need to give something back.
In the UK, people do not know about mesothelioma and believe that there is not a problem as asbestos is banned. They do not realise that it is everywhere from schools to offices to hospitals which is why we need to raise awareness. We would like every adult in the UK to know about mesothelioma so we have a long way to go as that’s about 35 million people!
There is insufficient funding dedicated to mesothelioma research especially for more innovative projects which are desperate for funding.
Lastly, to provide hope. It is difficult to be diagnosed with cancer but devastating when you are not given any hope. When I was diagnosed my wife and I were in shock and started looking on the internet for anything positive but sadly most of the messages were negative.
Erase Meso was launched on Feb 2109, with the help of trustees Richard Bath and Wayne O’Neil and we’ve been thrilled by the support we’ve received and the response.
My wife cried when Sir Chris Hoy sent us a message of encouragement!
Our 2 biggest events of the year are our Cycling Challenge (cycling Britain end-to-end) on Sep 9th and our Ball on October 4th.
Linda: What do you hope to accomplish with the Lands End to John O’Groats Cycle Challenge, 960 miles cycling event on Sept 9th-19th?
Paul: Our team of 14 amateur cyclists are hoping to raise money for research funds and increase the profile of Erase Meso.
As far as we know this has never been done before by anyone suffering from meso. There are 2 of us with mesothelioma who will be attempting the challenge – (Nigel Shaddick was diagnosed in 2016) – so we will hopefully provide those who have recently been diagnosed, with some hope.
Linda: What do people need to know about asbestos and mesothelioma?
Paul: The UK has the highest incidence of mesothelioma in the world with around 5000 deaths per year. That’s more than 13 people dying every day.
- Since the early 1990s, mesothelioma incidence rates have increased by around two thirds (67%) in the UK.
- Rates in males have increased by 58%
- Rates in females have increased by 96%
This devastating disease kills a similar number of people to other cancers, such as skin cancer, yet investment in research is severely underfunded.
Finding new and effective treatments is absolutely crucial if we are to save thousands of people who are at risk of developing mesothelioma.
Linda: What’s your 6-word quote for Congress about asbestos.
Paul: Stop people dying unnecessarily. Ban asbestos.
Linda: How can the ADAO community support your September cycling event?
Paul: Please could you promote it
We have a goal of reaching £30,000 so if anyone feels like supporting us, we’d be incredibly grateful. We are run by a group of kind volunteers so every single penny/(cent!) will go towards research.
Cheers to Paul and his wife Jill for raising asbestos awareness and funds to support mesothelioma research. Join Erase Meso, ADAO, and the Mavis Nye Foundation on September 9 as we take to Twitter and Facebook to support their ride and raise awareness and use #EraseMeso on your posts.