Its been a funny day today. The day after the day before is always a weird day when all the excitement has calmed down.
I had so many Face Book friends enjoying the news so many private messages and so man emails of congratulations. It was great
Today has been full of me back in full swing with my support group on line.
So many people just finding out at clinics today they have mesothelioma.It just never ends.
Im so pleased I have answers at my finger tips and can calm the nerves from diagnosis to treatments and to claiming.
On bit of news I enjoyed was a Man we in the Meso world know so well as he has always presented at the Novotel Mesothelioma UkHe could take about the claiming and benefits with ease. http://www.asbestosvictimsupport.org.uk/about.aspx
Asbestos Victim Support was established to provide a community for sufferers of asbestos-related illnesses and their loved ones. A community where sufferers can find answers to all of their questions in one place and share their experiences with others in similar situations to themselves. As well as providing detailed, up-to-date medical information, legal information and welfare benefit information related to asbestos-related illnesses, Asbestos Victim Support provides a unique interactive forum. A forum where individuals affected by the effects of asbestos-related illnesses, on themselves or on a loved one, can share their experiences and provide additional, much needed support and understanding to one another. Tony writes so many Articles on Asbestos and Mesothelioma.
AN evening of inspiration and celebration took place at the House of Lords on Monday (23 Feb) where the nation’s best campaigners, old and new, were awarded for their work.
The night culminated in the prestigious Long Term Achievement Award, jointly awarded to Tony Whitston from Manchester, for supporting people diagnosed with Mesothelioma and other asbestos related diseases and Des Wilson, who was founder-director of Shelter and leader of a number of other winning campaigns, including the campaign for lead-free petrol and the Freedom of Information campaign.
As part of SMK’s 10th anniversary celebrations, the evening was hosted by Muriel Gray, who hosted the very first awards ceremony.
Tony from Asbestos Victim Support is standing at the back right hand side.
DAST have had a great day of Awareness today
Chesterfield Council is warning people about the dangers of asbestos.
The authority is concerns that people carrying out DIY projects may be putting themselves at risk.
It comes after a campaign by Helen Redfearn, whose father died from Mesothelioma, the cancer caused by the toxic substance.
A Derbyshire group which works to raise awareness about the dangers of asbestos is projecting an interactive programme onto a screen half the size of a house.
It is so people can see where they might find the hidden killer in their own homes.
The Derbyshire Asbestos Support Team says it is especially important for people doing DIY or refurbishments to know about the possible risks.
The DAST say that despite Asbestos being banned since 2000 it may still be found in any property built before that date.
It is estimated that it is present in 90% of all public sector housing and schools as well as people’s homes.
Last year the group supported 294 people in the East Midlands who had been diagnosed with an asbestos related disease, 65 of those people were from Derbyshire.
The interactive screen is being launched in Chesterfield this afternoon, with trade workers and members of the public invited to use it.
It will show a guide to areas of the house with information about where asbestos may be found and what to do it asbestos is suspected to be present.
The support team say last year they helped 294 people in the East Midlands who had been diagnosed with an asbestos-related diseas, including the rapidly fatal cancer, mesothelioma.
Relatively low levels of exposure to asbestos may cause cancer.
Our wonderful Holiday in Benidorm 6 years exactly from the 14th Feb started my story as I found it had to walk back up to St Lucia to my sons villa.
My story appeared in Asbestos Justice what a shame my good news wasn’t in it but hey ho !!
In 2009, Mavis was given three months to live but refused to give up her fight with Mesothelioma. She now works within the NHS as a Patient and Trail Rep alongside TSSG Lung Members. By frequently attending many conferences and workshops around the country, Mavis continues to battle speeding up life-saving mesothelioma treatment.
I’m just an ordinary woman who married at 18 and washed my husband’s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn’t know the powder on Ray’s clothes was anything other than dust bought home from work. I shook his clothes and then put them in the washing machine. Forty-eight years later I find I have mesothelioma and a death sentence of 3 months.
After my husband’s apprenticeship and national service he returned to the dockyard. This is when he worked with asbestos all around as the laggers lagged everywhere in the ships when they were being refitted. My father also worked on the submarines as an electrician.
We lived a wonderful healthy life and bought up a family. I went to keep fit classes and walked miles with the dogs in our lovely countryside. Then we retired in 2000, sold our house, moved to the coast, bought a motor-home and settled into retirement.
Losing My Breath
Forty-eight years later and after a two month stay in Spain I couldn’t breathe and the story of mesothelioma began.
I had been to the GP as my arm had gone numb and I burnt myself on an iron but didn’t feel it. He thought I had a trapped ulnar nerve and made an appointment for me to have an X-ray and see a specialist.
In May I went to vote and I just couldn’t breathe. When I got home, to my amazement the GP phoned and told me the results of the X-ray were showing a mass and they had arranged a bed at the hospital for me to have my lung drained.
This was carried out and from the fluid they found cancer cells and believed I had mesothelioma.
Prognosis and Chemotherapy
That led to me being given 3 months to live. I didn’t accept that and after my pleurodesis at the Guy’s Hospital in London, I started chemo.
Cisplatin and Alimta which is the standard treatment in the UK. This worked for fifteen months then started growing again.
I was offered the NGR-hTNF trial at Maidstone, this clinical trial acts on the tumours blood vessels which I’m afraid didn’t work for me or I had a placebo. So two sessions of Cisplatin and Alimta, I became allergic but it did work and we had stability again for a while…then growth was found in my next scan.
The Life Line
What would I like next as there are no new trials or Chemo? I’m not used to a doctor having no answers.
I emailed Saint Bartholomews Hospital and that Friday I was in an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-op and then I might not even be suitable.
He threw me a life line of GemCarbo chemotherapy and I could have that locally. Back to Canterbury and I was on chemo again until September.
The October scan was bad news…the chemo hadn’t worked. A scan every three months was showing the growth of three millimetres every three months.
I wasn’t happy.
So I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons.
Then a Doctor gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me, so I asked my Oncologist and she referred me.
Joining the Meso Warriors Community
I’m now on a Phase 1 trial of Immunotherapy.
It isn’t just for mesothelioma but the trial, MK-3475, is a drug being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor.
When I was first diagnosed with mesothelioma in 2009, I Googled the word as I’d never heard of the disease, only asbestosis. All the depressing reports and write-ups gave me a shock of as there seemed no hope.
I turned to Facebook and completed a search which gave me so many Lawyer sites; however I did come across Debbie Brewer’s Facebook which led me to a wonderful community of patients around the world called The Meso Warriors.
Debbie and I became friends and together we created more groups. I started the Q&A page so I could ask all the questions I needed and there are groups for other needs such as:
- Mesothelioma Articles Groups with new trials and news so we can always be ahead and up to-date and also blogs where warriors can tell their day-to-day stories of their fight.
- Meso Warriors and Carers groups to help carers understand the diseases as well as get help when needing to cope.
- Individual Groups that are secret where each member can put their personal thoughts and stories and share with their own friends and family.
We even have a Tears Page for the partners that have lost a loved one so they share their lives afterwards. It’s amazing how that helps in so many ways. Post-mortems and wills and the day to day help to live again.
This has all become so successful that the world has joined in and we have members from America, Australia, and many other countries, we learn from each other, how the world copes with the disease. Also we fight for the ban of asbestos and how to manage it in the buildings.
Take Five Stay Alive Campaign is run by British Lung Foundation which I made a video for and became the centrefold in their annual report.
Suffering from mesothelioma, I wish we could take asbestos out of our lives or the closest to zero that could be humanly achieved. There is no statistical data as to the amount of fibres breathed in over time that can be medically proven to have caused mesothelioma.
I had my exposure from washing my husband’s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure. Since the use and importation has been prohibited in Europe, the exposure people are now suffering and still continue to be exposed to asbestos in our built environment.
For the sake of our future generations, asbestos must be removed from the world we live and work in. To do that, I believe it requires professional companies operating at the highest standards to continue to remove this category 1 carcinogen safely and make our world a safer place.
I fought against it by having chemo and now my last chance is MK3475, an immunotherapy treatment which is shrinking my disease very fast. For how long no-one knows at this point.
I fight on for the future and all our Meso Warriors past, present and future.