A Mesowarriors Diary Living With #Mesothelioma because of #Asbestos –Asbestos In Schools and my Dear Friend Tess


At the TUC Mesothelioma Action Day I met Gill Reed a lovely dedicated lady who was speaking on Brent Asbestos Exposure. 

It’s frightening to know how Schools have not been surveyed properly and have to be done again..

I had a lovely friend Tess Gully who lived by me in Margate. I want to just talk a bit about her as she is the face behind the figures of teachers dying with Mesothelioma.

We met on Mesowarriors on face Book and realised we did live near one another.

 

Looking at this photo again I’m the only one still here that is so frightening and upsetting. Tess Debbie and Jan we were all such friends and helped each other every night in messages through our journeys.

We both went to  Mesothelioma UK Patient and Carers Day in London 2012 and we immediately became real friends and not cyber ones any more.

Tess wrote a lovely blog and she called it Targets as she worked from one target to another. I followed her with that and I also lived by Targets.

http://tessgully.blogspot.co.uk/

She had been a School teacher and she was very talented making wonderful cards that often landed through the post to cheer me up.

Tess wrote 

MolMed expands NGR-hTNF trial in US’

MolMed, a biotechnology company, has expanded the Phase III trial of its investigational anticancer drug NGR-hTNF in malignant pleural mesothelioma, in the US.

NGR-hTNF is a vascular targeting agent belonging to peptide/cytokine complexes, which can selectively target the tumour vasculature.

There is a 50:50 chance I will get the drug or the placebo – but that is the chance I will have to take and with the backup of chemo it really is my best option. It will be a difficult journey – 2 hospital visits each week, consultant every third week, scan every 6 weeks, chemo day 1 and 8 of a 21 day cycle……. It is an hours drive each way to Maidstone so long days ahead. Whatever the outcome for me the info gained by the research team will hopefully benefit the next generation of asbestos harmed people.

This regime will all start next Thursday Nov 10th   so wish me and Alan  luck as we take this step into the unknown – scarey but with uncertainty comes hope.

Tess x——-


This is the trial we both went on together at Maidstone and we used to meet up here. It did work for me and I came off, Tess stuck at it.

We both had thinning hair but Tess had other side effects

She writes —

I was asked this last week – relating to the drug trial
Why am I doing this? Grasping at any treatment on offer even if it may be a placebo drug?
In the hope that it will not be the placebo and make things better.
In truth the best outcome will be to buy a bit of time.
Who knows how long this time might be? So why am I doing it?

I look at Alan
So big, so strong, comforting and caring.
Making sure everything is there for me.
So sad, so fragile – who is supporting him?
Need to keep on ‘keeping on’ – Alan needs me. We will journey on together.

I look at my grandchildren.
So new and perfect.
So much to learn about this funny old world.
So much to discover.
They have been a the main focus for Alan & I over this last year.
Need to keep on ‘keepin on’ – Ethan and Lilah need their Nana. We will journey on together.

I look at my boys.
Gentlemen now – so strong and manly, husbands and fathers too. Beautiful wives and children.
We gave them wings that they might fly and they have made us so proud.
They need me to keep them grounded and I need to see more of their story,
Need to keep on ‘keepin on’ – Jon and Tim still need their mum. We will journey on together.

I look at my wider family and friends.
I have been overwhelmed by their love and support
The letters, cards, emails, blog entries, daily jokes, small unexpected gifts, visits, social network messages, forum messgaes etc.
Need to keep on ‘keepin on’ – My friends need me to be there for them when they need supporting too and I need them to keep me sane!.  We will journey on together.

So that is why. With uncertainty comes hope.

Tess xx—–

Gradually Tess went down and down and Allen then wrote the blog

Supporters make the unbearable, bearable.

Tess has asked me (Alan) to write the blog again this week, as she continues to be very poorly.

Thank goodness the infusion Tess had last month reduced her blood Calcium levels back to normal. However, the blood test which confirmed this also showed that anaemia was a problem again, but not so bad as last time. Iron tablets were prescribed to fix it, rather than another transfusion.

The support team from the local Pilgrim’s Hospice have been fantastic. They and the district nurses, nutritionist and occupational therapist have provided many items to help Tess cope at home while she is so incapacitated. Last week the Hospice team organised a care package to help me look after Tess, and the girls who come in to care for her are so wonderful.

We have turned our house into a virtual bungalow now, converting our dining room into a bedroom with a hospital bed for Tess overlooking our front gardens – the view of our roses is so much better than the neighbouring roofs Tess used to see from our upstairs main bedroom.

When Tess has been feeling well enough, we have enjoyed the company of family and friends, but sometimes we have had to postpone visits when the pain and tiredness were too great.

The grandies are a great tonic. We now have pictures of Ethan in his new school uniform (he starts next month – how time flies). When we Skype Canada, Lilah likes to show off her piano skills. And best news of all – there is a new grandie on the way over in Toronto! Early days yet but so far Mum and bump are well.

Thanks for all your kind support, cards, flowers, good wishes and prayers. Tess and I really need them now.

Alan x—

Sunday, 24 August 2014

Four Years On …

Tess has asked me (Alan) to continue with her blog for now, as her condition weakens.

It was on 25 September 2010 that Tess went into hospital suffering from breathlessness. She underwent a number of tests and they took a sample of fluid from her chest cavity. She came home the next day.

The following week we went back for the results of the tests – and got the awful news that Tess had terminal cancer. Mesothelioma was a complete unknown to us then, but gradually over the next few weeks and months we discovered so much about this terrible asbestos-related disease of the lining of the lung. Life-expectancy was usually a few months or one, possibly two years if you were lucky. Very few lived any longer.

Tess has fought several battles over the four years since diagnosis. The chemotherapy worked well for some time to shrink the cancer, but it takes its own toll on the body. Surgery was also very effective in keeping the fluid in the chest (produced by the cancer) under control. This was so helpful in dealing with breathlessness and other symptoms.

Despite the wonderful support of family and friends, and the combined efforts of all the all the medical teams, Tess’s condition is deteriorating. The cancer is growing and more painful, she continues to lose weight, and we are gradually losing the war.

We now have a care team commissioned by the Health Service to assist me in looking after Tess, rather than the Hospice carers (which was always only on a temporary basis). So far, the girls are very good and gentle with Tess as they provide for her needs. The Hospice team are wonderful at providing palliative care on demand, with the support of our GP and district nurses.

Thank you once again for your kind support, good wishes and prayers.

Alan x—–


It was during this time I visited Tess she was in bed and we had a long talk and she laughed with Ray and Alan gave me loads of his beetroot from the garden.

A lovely afternoon that I will cherish for ever.

I gave my dear friend a huge hug and we left. The last time I would see her alive. So So Sad

I went to the (can I say )wonderful funeral. It was carried out with Love and music. All the music that meant so much to Tess and Alan. It was beautiful and filled with so much love. This lady had a wonderful life and working in a School teaching her devoted pupils –killed her !! We have to get Asbestos out of Schools. Dont think about it. Do it children play and bang around and the dust is released into the air and into those young lungs. Teachers are dying as Lucie Stephens has just lost her Mother This has to stop NOW

https://you.38degrees.org.uk/petitions/protect-our-children-and-teachers-from-asbestos-exposure-in-schools

The Brent Report is the eye opener

At the heart of this report is the shocking story of how a Brent child, Sarah Jane Bowman, became exposed to asbestos whilst a pupil at school and many decades later at the age of only 40 years developed mesothelioma. This report details the evidence that shows how some Brent pupils were potentially exposed to asbestos. They include Sarah’s eldest son who was taught in the same crocidolite paneled classroom hut as his mother at Braintcroft School. Crucially the report shows that the situation in Brent schools is being replicated across the country largely because of the government failure to require asbestos surveys and risk assessments that identify all the asbestos that can be disturbed by normal school activities. Finally, the report outlines what positive steps the Council, Government and Health and Safety Executive (HSE) can and should urgently take to make our children safe.

The HSE advises that asbestos is safe in schools so long as it is not disturbed. However, much concern has been expressed that many pupils are being exposed to disturbed asbestos despite the apparently more stringent asbestos regulations in force since 2004.

SUMMARY OF FINDINGS The union investigation regarding the five Brent schools outlined in the full Report reveals appalling findings: breaches of the asbestos regulations, failures to make or keep records of asbestos exposure, evidence of serious deception and attempted cover up, no proper bidding or overseeing of asbestos contracts or contractors, and the known exposure of pupils and staff to blue and brown asbestos in a highly friable condition being allowed to continue. The evidence showed that significant asbestos exposure of pupils occurred in the 1970s and 1980s whilst Sarah was attending school and in all the schools investigated in the 1990s and 2000.

Please read the report it is very interesting that we thought all Schools had been surveyed and the truth is they were not  and so much has been missed. The Government have  to spend out on new surveys.

https://www.teachers.org.uk/sites/default/files2014/Asbestos%20Management%20in%20Brent%20Schools%20%20The%20Short%20Report.pdf

Decades of lax attitudes towards tackling deadly asbestos in schools is a national “scandal” threatening the health of school children, a wide-ranging investigation has found.

Education unions say examples of the problem in schools they have found have underlined “systematic failings” in the way it was dealt with by successive governments.

Whitehall had a “scandalous disregard for life” by permitting inadequate surveys and campaigning against compulsory detection that it said would help prevent future cases of asbestos cancer mesothelioma, according to the Joint Union Asbestos Committee (JUAC)

The committee’s report said successive governments had failed to require schools to keep asbestos records and inform parents about the material in their child’s school.

It said: “This has enabled the culprits to evade responsibility for asbestos exposure leading to mesothelioma, allowing them to escape with impunity.

“Nothing can be done to put right past asbestos exposure, but we must do more to protect future generations of school children and staff.”

At the heart of the investigation is the story of one asbestos victim, Sarah Bowman, who developed the disease in her 40s – more than three decades after leaving Braincroft Primary and William Gladstone schools in the Brent area of London.

She was said to have been too ill to attend the National Union of Teachers (NUT) conference in Brighton this weekend where the report was presented.

The report found the risk to children – including Ms Bowman’s son, who attended one of the schools several years later – was underestimated because risk assessments and tests were designed for adults working with asbestos, and not for long-term exposure of children who are known to be more vulnerable.

JUAC said government documents released under Freedom of Information rules suggested full and comprehensive new laws to reduce the risk of exposure to asbestos were dismissed by politicians on cost grounds.

Association of Teachers and Lecturers (ATL) general secretary, Mary Bousted, described the report as “shocking”. 

“It is outrageous that staff and pupils are still dying from being exposed to asbestos in schools,” she said. “ATL has been campaigning about this for years. Action must be taken by the Government now.”

Experts believe the government should do a comprehensive survey to establish which schools are affected, as currently the true scale of the problem is not known. 

According to the Health and Safety Executive, more people in the UK die from the disease than in road accidents.

Asbestos campaigner Hank Roberts, presenting the report at the NUT conference, said: “Asbestos is giving death sentences as we sit here now to children for a terrible painful death later on.

Next year there will be more of them and there will be more of them the year after that. Until all asbestos is removed, this will carry on.”

The UK currently has the highest incidence of mesothelioma in the world and it is steadily increasing, according to the report. 

A Department for Education spokesman said: “Nothing is more important than the health and safety of children and staff in our schools. Since 2010, billions has been invested to improve the condition of the school estate, with a further £23 billion on school buildings to come over this Parliament.

“This will help ensure asbestos is managed safely and that the amount in school buildings continues to reduce over time. We have also published new guidance on managing asbestos in schools, and have transformed the way in which we collect information on asbestos to better our understanding.”

schools

Please don’t let Tess’s death be in vain or Sues’s or all the other Teachers. More than 224 school teachers in England have died of mesothelioma between 2003 and 2012

Goodness knows how many school children have been contaminated but one is too many.

We have young people dying at 18 onwards are they from school contamination. We don’t know but it has to stop NOW!!!

As Sue’s Daughter has written –  Parents have been kept in the dark about asbestos risks for too long. We want every school in the UK to have to produce an annual report about the type and condition of any asbestos on the premises and share this with all parents and staff. Every child’s potential exposure to asbestos at school must be recorded and shared with parents. This has been happening in the USA for the last 30 years.
AND
The Government must introduce and implement a policy for the phased removal of all asbestos from schools to be completed by 2028, starting with the most dangerous asbestos. MP’s recommended this in 2012 but no action has been taken.
 The facts about asbestos in schools
• 86% of UK schools have asbestos in them, putting over 7 million pupils at risk. A survey in 2015 found that 44% of teachers have not been told if their school contains asbestos. This lack of awareness puts them and their pupils at risk of exposure.
• More than 224 school teachers in England have died of mesothelioma between 2003 and 2012. There is a similar pattern for school support and maintenance staff. Last year 22 teachers died, meaning the UK has the highest death rate in the world. Experts predict that the number of school related deaths in the UK will continue to rise.
• Children are particularly vulnerable to developing mesothelioma. A five-year old child that is exposed is five times more likely to contract mesothelioma than someone exposed to asbestos in their 30s. It is reported that between 200 and 300 people die each year from exposure to asbestos as school children.All of these deaths are completely preventable. We’ve known the dangers since the 1960s with legislation controlling its use since the mid-1980’s. 2 million asbestos fibres can fit on a pin head but mesothelioma can develop from ingesting only one or two fibres. There are no safe levels of exposure to asbestos.

 
 
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