A Mesowarriors Diary Living With #Mesothelioma. A Phone Call From The Royal Marsden Appointments in The Diary, Please Write to your School back Lucie Stephens #Asbestos in Schools Petition.

We have managed to get the garden tidy again before the heavy rain Working together Ray cutting and me picking up the job was soon done and the rains came as promised.

I think because of all the rain we have had a wonderful display this year. So healthy straight and tall.

So does the bushes and when we have a small garden like this we have to keep it under control. I was pleased I was able to do it and I’m getting stronger all the time.

This means I’m losing weight as Im moving around more. Not the couch potato that I have been  for  long periods through the 7 years. I do cat nap in the afternoon but Im doing better now.

I had a phone call from the Royal Marsden and now my appointments are all changed.

I have to go on the 21st for  talk just to close the trial. The young lady wanted me to come Friday but I have to go to K & C for a NHS East Kent Locality Meeting. I want to go to this as I’m a Patient Rep. so it was agreed that I would go on the 21st July. Then She said the appointment for my scan would change as it has to be in September. so September the 5th was agreed. Then she said so matter of a fact that if my Meso was growing I could go back on the drug for a year. I  said no that wasn’t going to happen. “You don’t know that”she said. “You can go on another trail or sign yourself off. That wasn’t it,  what I had meant I want to carry on with the trial drug but the plan is to have a scan every 2 months  I dont envisage my Mr nasty getting off the floor again . “Oh we will see I will send all the plan to you.”

Why do they put you down, why do they take away your hope and your positive. Ok it might be true but we are so sensitive to how they talk to you.

Strange isn’t it I went back to how I felt in the cupboard when a young Doctor told me I only had 3-6 months to live 7 years ago.

We really do need to get through how the patient needs to be spoken to with hope. I have been through 2 years of intense drug trial and been good and did everything that was asked of me.

I put the phone down and tried to tell Ray but I broke down in tears he panicked and thought I had been told bad news now.

So I’m still not free of the shackles of medical life. Im not moaning honest Im so grateful for all everyone’s achieved for me. i just know what upsets us Mesowarriors and how we like to be talked to. Of course I would like people to agree my Mesothelioma wont return but they can’t so I will just have to prove to them MR Nasty is Dead.


My last Blog has really been approved by so many and our Asbestos in Schools campaign is doing well.

Today I wrote another Linkedin piece to highlight Sues death from asbestos in her teaching life. her daughter is highlighting the subject so well and we have linked up and I back her all the way.

Asbestos In Schools Every parent should write to their school

Lets have every school recorded and help  Lucie Stephens

sue 12


Please consider writing this letter to your school to find out if it contains asbestos and how it is being managed. Government policy is for transparency around asbestos but currently parents only hear about if they ask about it.
Please let me know if you send the letter and what response you get. Please share this letter with other parents. Thanks


I am writing to ask you for more information about asbestos at <INSERT NAME> School. I am asking this because I am concerned about the safety of both the children and the teaching and support staff at the school. I’m sure you are busy, with many things competing for your time but I would ask that you find time to take these questions seriously. The latest research in the UK shows that over 86% of schools in the UK do currently contain asbestos, putting over 7 million pupils at regular risk of exposure. A survey by the NUT in 2015 found that only 46% of teachers knew if there was asbestos in their school. This lack of knowledge puts them and their pupils directly at risk.

Mesothelioma has a very long latency meaning that many victims are diagnosed with the illness 30 to 40 years after their exposure. The number of UK teachers dying from mesothelioma has risen to 22 a year. This is currently the highest rate in the world and is predicted by experts to continue to rise. Children are particularly vulnerable to developing mesothelioma. A child first exposed at age 5 is five times more likely to contract mesothelioma than someone first exposed at age 30. It is estimated that between 200 and 300 people are dying each year as a result of exposure to asbestos when they were pupils at school. 2 million asbestos fibres can fit on a pin head but mesothelioma can develop from ingesting only one or two fibres. The fibres can pass through the smallest gap or crack.

My questions
Has an up to date asbestos survey been carried out for <INSERT NAME> School? Is there asbestos present and is there an ‘asbestos management plan’ in place?

If there is asbestos please can you tell me:

1. What type of asbestos is it? How much there is? Where is it? What condition is in it? What plans are in place for it’s management and removal?

2. Can the children knock, scrape or damage the asbestos? Can teachers or support staff disturb the asbestos?

3. Do all teachers, support staff and volunteers (including staff on temporary contracts) know where the asbestos is? Do teachers, school support staff and volunteers know what actions to take if they see any damage to the asbestos? Are staff and volunteers regularly updated on how the asbestos is being managed and the plans for it’s removal? Do all new staff and volunteers receive information about asbestos as part of their induction?

4. Will the school commit to producing an annual report for all parents and school staff reporting on the extent and condition of asbestos in the school and the plans in place for it’s management and removal?

I’d be grateful if you could respond to this request by writing to me at <INSERT ADDRESS>.

With best wishes,


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