Saturday we had to go to the doctors for our flu jab. It’s the earliest we could fit it in due to so many trips to London Meetings. November has been so busy.
Sunday was rays MRI at Kent and Canterbury. Yes on a Sunday. The poor machines work from 8am to 8pm everyday.
I took Louis with us so that I could walk him and we had a great stroll around the roads. I then went in to see how Ray was getting on
He was still sitting in the chair in the waiting room but to be fair we were early so right on appointment time he went in.
A man who was already in the other scan machine came out and grabbed a cup of water. He said he had panicked in there being shut in. I began to worry about Ray then. Out he came smiling away. He hadn’t liked it but he was ok.
In his own words of his blog —
Funny old day. just b4 lunch we set off to the hospital. It was for my MRI Scan. Good news almost bang on time I was called in Come in my lovely the nurse said. Have you had an MRI b4. No my first one I said .have a shelf to refit
Pop on the bench for me .Ha I see you have a Zip in your Trousers. ERR! was that meant to be funny. No it’s because its metal. Slip them down for me will you. Lay flat and try to keep still. She gave me a buzzer if I needed help. It will be noisy I was warned.
Wow not frightened but so claustrophobic. It’s only a couple of inches from you face and into the tunnel you go. I kept my eyes shut most of the time and kept thinking of cloudy skies and bright sunshine. It was all over in 30 minutes.
Back home an early lunch and I confess I nodded for a bit, but then I had to get on with my decorating. All that’s left is refit a shelf and hang some pictures. It’s good because my back is playing up with all the leaning and twisting.
I came home and I have been itching to put the Lights up. I havent done this on previous Christmas’s as it was always going to be my last one. I have more confidence this year and I’m really looking forward to Christmas this year.
So I played around and fixed the lights into the front room window
The photo doesn’t do the scene justice I’m not putting anymore in there less is more. The other half of the room is all lit up that isn’t in the photo.
As I sat back and bathed in the glow of the light as tears run down my cheeks I was full of so many emotions. My survival and seeing a Christmas I had never dreamt I would see, the lovely friends that havent made it to be here with me and those Mesowarriors that are suffering so much. it is a whole mixed bag of thoughts. I didn’t know Ray was also writing a blog saying —
Mavis is busy putting up xmas lights. Xmas is almost here now.
I am grateful for the past 7 Christmases we have had since diagnosis. We were not supposed to have had anymore.. I hope we have a few more left. I raise a glass to that to more Christmas’s
So we are settling down normal life. I have a Cancer Meeting in the diary and then the next day a personal INVITATION TO COMMEMORATIVE BOOK LAUNCH
Sculptor Martin Jennings’ stunning work is the first statue of a named black woman in the UK, unveiled on June 30th 2016. This commemorative book describes the 12-year campaign to make it happen, in the words of some of the key players whose fundraising work ensures that Mary’s statue is truly owned by the community. The book outlines the sculptor’s vision for London’s latest landmark as well as the process of turning that vision into a beautiful, lasting tribute to Mary. It reveals how Mary’s work will live on through the new Mary Seacole Trust.
Signed copies of the book will be available for sale at the launch. It will also be on sale at the Florence Nightingale Museum and the Black Cultural Archives in Brixton, as well as other museums and online outlets.
Mary’s statue is just around the corner from the Florence Nightingale Museum and can therefore be viewed after the book launch illuminated so that, in the words of the sculptor Martin Jennings, the circle of the bronze disc behind her echoes the circle of the clock on Big Ben.
We had a great time visiting the statue earlier this year.
We are finishing the bedroom today so i will show you tomorrow as it is very unusual for us.
Oh dear I can’t sleep so I have a coffee and its 2.30. Turn on my computer to see how the Australian Asbestos Week is going and came across the name Trevor Gillmeister.
Me being me I googled his name and found Trevor Gillmeister is an Australian former rugby league player who is currently employed as a Rugby League analyst at Channel 7 Brisbane. During his playing days Gillmeister played for the Eastern Suburbs Roosters, Brisbane Broncos, Penrith Panthers and the South Queensland Crushers as well as representing Queensland and Australia.
But He is Queensland’s Asbestos Ambassador and all because he lost his dear father to mesothelioma.
He has made a video of a letter he wrote to his dad.
Dear Dad,
It’s been a while mate, but I think about you all the time.
The families are well, we all still get together for the family barbeques with Mum. I’m doing a fair bit of coaching now – the year has been a bit up and down as usual.
Do you remember my first game of footy with the Gladstone West Panthers under 9s? I always wanted to play footy, that was my main goal. I must have done alright though to be asked by the great Artie Beetson to play for the Roosters. Even though you tried to talk me out of it, you always supported me. Sydney is such a big city, I remember asking how to get to Bondi and you just told me to get over the bridge and hook a left. You were pretty spot on, I made it.
You were always such a hard worker, I think that’s why you were so well recognised in the industry. It’s thanks to you that I got my foot in the door and started my apprenticeship.
I can still remember the day you got diagnosed. It wasn’t fair. You’d just retired and gotten back from the cruise with mum.
I’d never heard of mesothelioma before. I remember saying to you, mate, you’re a strong bloke, you can beat this, there might even be a cure, but you just gave me a blank look I think you knew, they gave you six months, but you didn’t give up, you proved them wrong and we got you to almost a year.
You were a tough old bugger and I’ve always tried to be like you. I’m continuing your fight.
I’m getting out there as an asbestos awareness ambassador. I want people to be more proactive and careful around the stuff. I’m starting to notice a change too. People don’t just recognise me for my football career anymore, they see the work I’m doing and how important it is for me to have people talking about asbestos.
As tough as you think you are, asbestos is always going to be tougher.
I’m not going to stop…. I’m doing this for you.
We all miss you Dad.
Love you mate,
Trev.
Gilly was an assistant coach at the Gold Coast Titans from 2006 to 2014. He walked over 1400kms from Townsville to Brisbane in October 2014 to ‘Take an Axe to Asbestos’ raising public awareness about asbestos, as well as much-needed funds for families affected by asbestos related diseases.
What a lovely man I will follow more of his work
Rod Smith was up late it was 5.30am when he messaged me ad he had been up all night finalising a new website for the Bernie Banton Foundation.
He was telling how proud he was that the 1 day conference that he had run was a great success and that it will be a yearly event from now on. I told him I surprised Karen read out my message to cheer them on and hoped all went well. Karen read it out along side one from Bob Carr (ex NSW Premier and Australian foreign affairs minister.So amazing to be linked in with such a great man.
Rod said –Mavis, it went exceptionally well, I mean exceptionally well. It would seem for once I got something right. Prof Bruce gave an amazing relatable talk on immunotherapy. You will love it.
There is a video being loaded in the next few days so I will blog it as it comes with in the Australian Awareness Week.
Here is the new web site I have found it fascinating. So full of information that even we win the UK will find so helpful. Very impressed.
Industrial Relations Minister Grace launched National Asbestos Awareness Week
With the words :-
“An estimated one-in-three homes contain asbestos in Australia, so it’s vital that tradies and DIYers alike understand how to work with the old building material safely,” said Ms. Grace.
“Raising awareness of asbestos safety is aimed squarely at keeping Queenslanders free from the terrible diseases this material can cause.
“Deaths from asbestos-related diseases remain a sad reality, as it can take many years for the symptoms to emerge and in many cases, people aren’t even aware that they’ve been working with asbestos materials.”
It is estimated that more than 25,000 Australians will die from asbestos-related diseases in the next 40 years.
“Although it’s safe if in good condition and left alone, asbestos can be very dangerous once you start drilling into it, or breaking it up,” said Ms. Grace.
“These are just the kind of jobs that electricians, renovators, home handymen or builders might do.”
Asbestos Safety Advocates Julie and Don Sager also joined the occasion. The couple lost their 25-year-old son Adam to mesothelioma after being exposed to asbestos during a home renovation.
Ms. Grace also praised Queensland’s Asbestos Ambassador, Trevor Gillmeister for spreading the asbestos safety message.
“Gilly works hard all year-round to get asbestos safety messages to people in communities across the state,” she said.
“For him, raising awareness is a personal commitment – a few years ago he lost his father to an asbestos-related disease, which he contracted through his work as a boilermaker.”
This month, Workplace Health and Safety Queensland met local councils and hardware stores to put on workshops and safety demonstrations across the state for tradies and DIY enthusiasts.
More information about working safely with asbestos is available on www.deir.qld.gov.au/asbestos or by calling 13 QGOV (13 7468).
I have also had the great news that the day we went to the Lords with Laurie Kazan-Allen The question was raised about Company House and the disposing of Company Records that had been proposed.
Ian Lavery MP said they didn’t understand just what that would mean to people and information so yes he had noted this and will action as the Police have also made it known they use the records as well when investigating Fraud etc.
Well true to his word We won here it is in black and white Thank you Asbestos Victims Support Groups Forum UK, the British Lung Foundation and other relevant bodies We asked and we got – The Government has no current plans to bring forward proposals to reduce the period of time that Companies House retains records of dissolved companies. http://www.parliament.uk/…/written…/Lords/2016-10-31/HL2863/
The Government has no current plans to bring forward proposals to reduce the period of time that Companies House retains records of dissolved companies.
We will continue to keep the retention period under review. Any future proposal to change the retention period would be subject to public consultation.————-
The records are saved and will carry-on being used when Mesowarriors need to find Companies to sue for the misery Asbestos has caused.
Leading asbestos lawyer Harminder Bains has welcomed the announcement by the Government to scrap plans to dispose of the records of companies which are no longer in existence.
The Guardian reported in August this year that Companies House was planning to destroy the records of companies that had been dissolved for longer than six years; this would have overturned their current policy of retaining records for at least 20 years.
Responding to Parliamentary questions[1], Margot James MP, Parliamentary Under-Secretary (Department for Business, Energy and Industrial Strategy), confirmed that not only would there be no reduction in the length of time Companies House retained these records but that there would now be no destruction of any records currently held on dissolved companies until and unless there is an agreed change of policy.
She also confirmed there would be no change in this policy without a full public consultation[2].
Harminder Bains from the law firm Leigh Day had planned to take legal action against the Government, on behalf of the Asbestos Victims Support Groups’ Forum UK, had the proposal to dispose of the records taken place.
She said: “It is essential that victims of asbestos exposure are able to access historic records so that they, and their lawyers, can trace companies, former employers, and the insurance company responsible for their liabilities.
“We are pleased that the Government has taken this step so that we, on behalf of our clients, will no longer have to challenge these proposals in the High Court as these proposals would have seen thousands of victims of asbestos exposure denied justice.
“We are especially pleased that the Minister has confirmed that there would now be no destruction of any records currently held on dissolved companies. This is important to our clients as asbestos diseases can take decades to develop[3], sometimes as long as 60 years following exposure.”
Graham Dring, Chair of the Asbestos Victims Support Groups’ Forum UK said:
“This decision is good news for victims of mesothelioma and other long-tail industrial diseases who already face an uphill struggle securing justice in the courts. If these proposals had gone ahead it would have denied access to justice to many asbestos victims unable to pursue a negligent employer or their insurer.
“It is also reassuring to hear the Minister confirm that no records will now be destroyed as even the 20 year retention period is inadequate in protecting the interests of terminally ill asbestos victims who may have been exposed to asbestos 40 or 50 years before.
“There is no way of predicting which records may be needed in the future. Storage should not be an issue with the technology available to us today and we expect Companies House to maintain its commitment to those suffering from mesothelioma now and the thousands more predicted in the future by retaining records of all dissolved companies.”
Notes:
[1] Martin Docherty-Hughes MP, West Dunbartonshire, 14 November 2016
[2] Ministerial reply to Martin Docherty-Hughes MP, 17 November 2016
[3] Average latency period for mesothelioma is 34 years.
The legal team from Leigh Day was led by Harminder Bains instructing Jeremy Hyam QC from One Crown Office Row and Kate Beattie from Doughty Street
Woke up today to a lovely message from my friend Jonathon Simnett —
Today I had the privilege of attending the Bernie Banton Foundation’s special day. What a privilege it truly was. Your message of support of the event was received with special appreciation and thanks. My best wishes to you and Ray. Regards Jonathan
This was pleasing news that Rod Smith had not only received my Message but had read it out and I had played a part.
My Message said
The Monday of Asbestos Awareness Week is BERNIE BANTON DAY. This year the foundation is holding a Symposium on Malignant Mesothelioma [asbestos cancer], and the presentation of the inaugural Bernie Banton Foundation Awards at the Parliamentary Theatrette, NSW Parliament House, Sydney.
I would love to have taken part but I’m in Pommy Land so I would like to send my best wishes for a successful day.
I have suffered with Mesothelioma for 7 years now and in all that time Ray and I have had the friendship of Rod and Karen.
We have helped each other to get through the Pathways of this disease.
It isn’t easy and I know just how hard it is for you to come to terms with the diagnosis and the fight to find treatment.
We cry for everyone that looses the battle and hug those that are surviving
Hopefully coming together and talking with each other and sharing all that is coming in the future we will find the way to the right Treatments and maybe one day the cure.
So have a great day and a great Symposium.
I send my love and hope for the future and Merry Christmas to you all and your families.
Love Mavis a Mesothelioma Warrior.
So it all sounds it was a great success and I hope that spurs Bernie Banton Foundation on to hold this event every year as it raises so much awareness and you know I love doing that.
A sad day as well, as Lou fights hard for her life after 14 years of Mesothelioma Peritoneal.
My love goes to her, Keith and the family as she fights on.
I hate the photos of her with Oxygen, as to me these last days should be private but others don’t agree with me.
I know it is the whole story of just how nasty Asbestos is and causes so much damage but as a sufferer and a friend it hurts me to have to see her like this but also it reminds me just what is ahead as I fight Mesothelioma.
I’m only human and Im scared.
It reminds me what would have been if I hadn’t taken the chance and agreed to a trial.
I would have been dead 2 years ago.
So many people are behind her in the fight to get the Drug available to many in Australia, they will keep fighting for her, so it will happen its her Legacy, as it is mine, Keytruda has played a huge part in our Journey, all praise to Merck (MSD) and the wonderful Scientist that discovered Immunotherapy
I sent Lou the message — We have to keep fighting Lou Keytruda has bought us so much extra time to be with our loved ones and wonderful friends. We must use our voice to the end to keep raising awareness of Mesothlioma and Asbestos and also for these drugs that have turned our disease around and will replace Chemo in time.
Thankyou for being my friend in this journey.
So we work with Australia and their Asbestos awareness week I wish this was a global Week so it is up to us to make it so
Lisa Singh@Lisa_Singh
#asbestos awarenessweek time to shed light on illegal asbestos imports into Oz
Its been a very stormy night with very high winds and rain lashing down.
they have named this storm Angus.
The Met Office said gusts of 84mph were recorded at Guernsey Airport, with 53mm of rain being logged in Exeter, Devon, including 10mm in one hour.Forecasters have warned of possible power cuts, damaged buildings and travel disruption.
Among the areas already known to be affected by flash flooding are Plympton, near Plymouth and the M5 near Birmingham.
So many people have had a sleepless night and I woke up early as well and then saw neighbours lights on.
Life has been quiet this week and back to normal so we have decided to decorate the bedroom. I hate having to choose colours as I just can’t make my mind up.
Off to B&Q today to find the right paint to match our ideas.
Over the last 2 days I have been really having a clear out of the bedroom as after 7 years of being so involved in my illness things have piled up and so Im hitting the wardrobes again. Lucky enough we have a clothes bank at Tescos so I was able to take my pile straight away and get rid or I know I will start saying “well I could keep this and keep that” and everything will get hung up again.
Our Fight against Asbestos in Schools has really taken off with reports coming out all over the country and the schools being listed that have asbestos in them.
We don’t really want to cause a panic but just to get the Government to move on this and start a program of removing it to make the Schools safer for young lungs. It’s not an old mans disease as we have patients from 18 upwards.
So far, 12 Kent County Council employees have a brought cases against the council and has admitted liability on eight of these claims.
They find the money for Buck House and House of commons they really should sort the schools.
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.
If you really are shocked by all this then please sign The petition that Lucie Stephens is trying so hard to have more people signing.
Bernie Banton Foundation in Australia is having their first Symposium on Mesothelioma and Asbestos Related Support. It is being held at Parliament House in Sydney, on Monday the 21st November. so I wish Rod Smith and Karen Banton success with this. I wish I could be there but they know I support them from afar.
Once again we travelled up to London this time to a Mesothelioma UK Advisory Board which I’m a member of alongside the Meso UK Nurses and my Mesowarrior friends.Also I met a lady I have made friends with on facebook from Tayside Support Group. It is great to meet in person even if she did have to fly down from Scotland.
HASAG were present as well and Jeremy Steel it was great to meet up again.
So we were back in the Field Fisher Offices, a place I love as the view is so great.
I would never tire of this if I worked here and I find all the people working there feel the same.
Peter Williams Of Field Fisher meet me to shake my hand and is so happy to see how much I have improved.
It tickles me just how many people know me and my story. I can’t help to be so proud to be able to talk about all the care I have had. I’m so proud of the NHS and MSD.
So we ran through the minutes of the last meeting and then discussed so many things in more detail They are wanting 28 nurses and so the funding has to be stepped up.
It was bought up about legacy’s
I said have just a little write up as a permanent spot in the News Letter but they are worried about how other Patients would feel about it. I did say don’t worry about upsetting us as we are positive people and we have to discuss so many things when we have been diagnosed. I have been though so many things in my 7 years I seem to be able to discuss anything now.
Gifts in wills are an amazing way of continuing your support long into the future.
In the future, doctors and nurses are going to get better at diagnosing cancer earlier, and treating it. But the fact is almost half of us will get cancer at some point, and have to go through some tough times before we hopefully get better. And that includes the people we love.
So I don’t see why mesothelioma Uk cant do this as well. We all know how hard it is to get funding.
Most Mesowarriors ask for no flowers at their funeral and have the Donations to MesoUK.
In fact it was discussed to link up more with Macmillan as they have a great deal of helpful information so why rewrite everything. I will Blog more using the links and put more links on my Groups in Facebook.
On The MesotheliomaUK Web Site they do give info on the subject
In order to bequeath a legacy to any charity like ‘Mesothelioma UK Charitable Trust’, you must make sure it is included in your will.
The three main types of legacy that you could leave to a charity are:
Residuary Legacy:
Once all other gifts have been made i.e to your family, friends or others from your estate, a residuary legacy is a gift of the remainder or part of your estate, it is a fraction of your estate rather than a cash sum and will retain the value over time.
Pecuniary Legacy:
Is a monetary gift of a specified amount.
Specific Legacy:
Is a gift of personal possessions, this may be land, buildings, furniture, antiques or jewellery.
How do I Leave a Legacy?
To include Mesothelioma UK Charitable Trust in your will is an easy, straight forward and cost effective way to support us. You would need to add a short statement (clause) to your will and we would always advise you to use your solicitor to assist you.
“I Don’t Have Much to Leave”
A common misconception is that legacies can only be large amounts of money and this is just not the case. You could leave as little as £1.00 in your will. Any gift or legacy no matter how large or small, is important to the charities you support and without your donations, we cannot survive.
What is a Pledge?
Gifts that are left in wills are really important to charities. However, even if you haven’t made a will, making a pledge to leave a gift in your will in the future is an ideal way that really helps your chosen charity find out about your future intentions which will then enable them to plan for the future. Pledges are not legally binding so by filling out a form you will not be committing yourself! You are simply allowing your chosen charity to confidently estimate future support for their causes.
What About Tax?
Charities are generally exempt from inheritance tax so gifts to Mesothelioma UK Charitable Trust are tax efficient. Many people use gifts to charities to stay within the inheritance tax threshold, thereby avoiding the tax altogether.
What is Inheritance Tax?
We advise you to seek professional advice in respect of Inheritance Tax as the rules can be quite complicated and there could be quite a few exemptions/reliefs that may apply, also inheritance tax can be open to government changes.
What if My Circumstances Change?
If you include a properly worded legacy in your will, it will allow you to take account of any changes that may occur in your personal life. You can be safe in the knowledge that if your circumstances change your will automatically takes care of these changes so that you are able to look after yourself and family first, whilst still being able to take account of your chosen charity, but only if there is money left over from your estate after you depart.
A Guide to Will Making
Making or updating a will is a lot easier than most people think. We have put together and answered a few questions that you may have and why everyone should have a professionally written will and the best way to go about it.
Why Do I Need A Will?
It is important that everyone over the age of 18 years has an up to date professionally written will, and while we cannot predict the future, we can make sure that after our death our wishes throughout our lifetime are carried out, and thereby help to relieve our families of added stress at a time of bereavement.
Although parts of your estate may go to your family, if you have not made a will it maybe that your spouse will have to share their inheritance with persons/relatives you would not want or wish to inherit from your estate. Your family may also have to pay Inheritance Tax, which is currently charged at 40%. If there were no relatives, your estate would then go to the Crown.
Having a will gives you and your loved ones peace of mind; it also means you can save your beneficiaries from paying unnecessary taxes. You may want to leave gifts for other family members or your friends or a charity, and it gives you the opportunity to decide about any wishes you may have about your funeral.
Can I Draw Up My Own Will?
When making a will there are issues that need to be considered, you may wish to create your own or get over the counter templates but unfortunately, they can lead to various problems without professional advice, and they may not easily be rectified after your death. There maybe important details left out or it could lead to the will being made invalid or an unexpected tax bill. When dealing with these issues it is always advisable for you to get professional advice from your solicitor.
Is It Expensive?
It will depend upon how complex your affairs and your wishes are, but making a will is easier and more affordable than you may think. We recommend you contact your solicitor in the first instance and be sure that you and the solicitor are clear about your wishes. You can request an estimate at no commitment before you decide.
You may already have a will and may want it to incorporate a legacy; your solicitor will attach a written instruction called a Codicil (a Codicil is a document used to change a will that has already been made). Do not change the will yourself as it may invalidate it.
The author accepts no responsibility for actions taken as a result of the above article. When considering your will, a legacy or a pledge legal advice should always be sought for the most up-to-date information and advice tailored to meet your personal circumstances.
If you would like to discuss leaving a legacy to the Mesothelioma UK Charitable Trust in the future please contact Jill Lemon, Fundraising & Marketing Manager on Freephone 0800 169 2409.
There will be more funding in Scotland at Glasgow for A procedure called a Percutaneous Spinal Cordotomy may help relieve pain that has not responded to conventional pain medicines. The procedure involves heating some of the pain nerves in the spinal cord that send pain information to the brain. It involves placing an electrode (about the size of a blood test needle) into these pain carrying pathways, using special x-ray guidance. It is done under a local anesthetic; the patient is awake so that they can communicate any sensations felt during the procedure. Patients who have been treated with this procedure can gain long-term pain relief (months to years). Sometimes the procedure can be unsuccessful because the pain nerves cannot be identified safely. Any risk should be discussed with the doctor. There are currently four centres offering a Percutaneous Cordotomy service to patients – these cover the South, North, North-West and Midlands. They have all agreed to have their details circulated.
Dr Paul Cook (Consultant in Palliative Care & Anaesthesia), Room 21, Central Offices, Pennine Square, Royal Oldham Hospital, Rochdale Road, Oldham, OL1 2JH
Tel: 0161 656 1912 Fax: 0161 656 1929 E-mail: paul.cook@pat.nhs.uk
Dr Mahohar Sharman (Consultant in Pain Management), The Walton Centre for Neurology and Neurosurgery NHS Trust, Lower Lane, Liverpool, L9 7LJ.
Tel. 0151 529 8294 (Pain Clinic) or 0151 529 2098 (Aintree Palliative Care Service)
I have to admit I really must keep an eye on information as I hadn’t realised this had been update and things are changing fast nowadays.
Peritoneal is the cinderella of Mesothelioma But there are 2 trials that are including this rarer Disease with the new drugs coming through they are including so if you have Peritoneal please contact St Barts or Leicester and ask. We don’t get anywhere unless we chase.
It was soon dark and London Lit up before us so we all made our way to the Tube Station and went our separate ways. It had been a great meeting.
Our train was packed and we stood with 3 men that were Carpenters and were putting in Kitchens in Pent House suits that were costing 3 million. A door handle costing £300 ?
Then one man started talking about his son of 6 months weighing 2 stone ???
He showed a photo and I asked to see it. He was just a normal little boy but he looked about 2 years old. goodness knows how big this baby will grow to.
We walked through the train to number 4 carriage as it splits at Faversham and I was laughing as all the men were asking “Do you want my seat” bless them all I love the kindness shown but we were walking through and finally found a seat in the right carriage.
We were soon home and dog walked and diner cooked.
The weather has really turned and winter is coming in to make us feel so cold.
Off to London today on the fast train as it carries us to St Pancras and to the London Office of MSD. It couldn’t be more convenient as their office is on the site right next door to the station in St Pancras Square.
Ray and I had been invited to a meeting with Dr Paul Robinson from MSD, at their nice new offices in King’s Cross. It was great to have the invitation, I was so thrilled as I thank MSD for saving my life with their Immunotherapy (you all know the story of my trial)
We shook hands and Paul sat us in an office to explain everything and to talk about his work.
Paul’s job is interesting – trying to get the patients voice into the company, so that they develop medicines that meet our needs, and make clinical trials available as widely as possible. The sheer volume of research to be done, just to prove that a new drug works in one type of cancer, is huge and MSD are studying pembrolizumab in over 30 different cancers, including mesothelioma. Keynote 158 is the latest study with mesothelioma patients included, and is fully recruited, thanks to our Mesowarriors who travel to The Royal Marsden– fingers crossed for the results Clinicaltrials.gov says September 2017.
So I questioned Paul about the next trials as we need them to keep coming. He told me there were lots of other studies going on, some in combination with other company’s drugs, all of which is great. Looks like there is going to be one with defactinib soon, so let’s make sure it’s a success. Please keep getting referred to the hospitals that deal with the trials. I explained what we need is a database that allows patients in the UK to find centres easily that is kept up to date, Clinical trials.gov is OK for the US, but we need something like it in the UK so Mesothelioma UK can keep the current info as I find there are trials talked about and we the patients do not hear about them. We need more publicity of the trials, Paul agrees and has some ideas.So he will sort the problem out.
I told him to keep up the good work – we patients are impatient ! we don’t have time to waste. We’ll carry on pushing you to do more, faster. Please try to find out which patients benefit, and do not. Lets keep talking.
So we then went to lunch. Out in the cold again but I hadn’t realised that when we went in it was opposite Google London Office , I believe its their head office. There was a gym I could see on one floor. When I came home and looked a running track is on the roof. Can you imagine working in such a lovely building
There are many Bistros and we had a very nice lunch with very tasty food and a great house wine which is unusual for me to say that about a house wine.
Lots of talking so a working lunch really.
We had to say goodbye and Ray and I came home on the train chatting over all the things talked about. It has been a good day and so very interesting.Thank you Paul xx
Yesterday was a very relaxing morning as we had time to spend in doors and do the housework. No rushing off to London on trains that was just great and we put our feet up.
We set off to East Malling for our duties as Patient Rep and Carer at the Lung Site Specific Group.
A lunch was provided sponsored by Bristol Myers Squibb which was very nice and very welcome by the Doctors and Nurses tha attend these meetings.
I like to share what we talk about in these meetings in the hope of attracting more Patients to join in as the Patients Voice is appreciated.
We reviewed that minutes from the last meeting (I didn’t attend as I was still getting over iMIG and when i think back I realise how much stronger I have got since may.)
A Clinical Update Quality Surveillance I think more work needs to be done on this to get it working more efficient. Figures have to be right or it just isn’t going to work.
Plurideseis is now being carried out locally which is a great idea as travelling to London was the hardest thing after diagnosis. Traveling on the train to Guys and very hard for visitors then the steps you have to climb to the station when i was released to come home. with the porthole and drain which I was so scared someone would knock all so unerving.
The new lung pathway of care was discussed and that needs to be tweaked.
Then we heard the best presentation of Immunotherapy that I have heard .
Doctor Shah has been doing a wonderful trial for Lung Cancer and I was enthralled to hear that it was Immunotherapy against Chemo. No Placebo. AND if the Chemotherapy wasnt working the patient could cross over to the drug. Now that needs to be carried out on all trials something I never understood. We hate the word Placebo and it puts a lot of patients off of trials. I will bring this up at my meeting with Merk
The New group that is being formed for Mesothelioma sufferers was Introduced by Ms Townsend.
The LASAG London and South East Asbestos Group. I did say that Medway would be best because it’s a Hot Spot but then it was suggested if the added it to Lung Group it would then attract more people.
Then it was center stage for CNS Nurses and the problem we have in east Kent of a shortage.
My CNS nurse was coping well but then they gave her Margate to look after so she is stretched over 400 [patients not the recommended 100.
I handed in a letter of I wrote to the Board and my reply which was passed on to a Network group to see if they can raise some finances for another CNS.
It was a great meeting and I do love to be so involved as I then keep up to date with what is happening in my local area.
I have so much to write about so lets start with my Scan result.
It is still the same. Stable and Benign. Its been a busy time travelling back and forward to the Marsden and today the traffic was so bad but Ray is so good he always gets me there on time. Bless him x
Well this news has to take second place to my day yesterday.
We had been invited to the House of Lords and to the All Party Parliamentary Group On Occupational Safety and Health Asbestos Sub Committee. I have attended before but this was momentum I’m in awe of People involved.
Laurie Kazen Allen of International Ban On Asbestos And British Asbestos IBAS.
HASAG
Asbestos victim’s Support Groups Forum UK
DAST
So many people fight our corner no more so than Ian Lavery MP, Jo Stevens MP and Lord Hunt of the Wirral who chaired the meeting.
The Agenda was :-
Diffuse Mesothelioma Payments Scheme.
They have made a note that Pleural Plaques should come into this payment scheme.
National Mesothelioma Centre
Prof Sir Anthony Newman Taylor spoke on the development of the Centre and that we must build on the Governments £5million as that will help to set it up but it then needs more funding to run the scheme.
(British Lung Foundation were in the debate at the same time securing the scheme and Dean Fennel was speaking as well.)
Today we’re announcing a game-changing donation for people living with mesothelioma.
We’ve secured an amazing and generous gift of £5 million from the Victor Dahdaleh Foundation, which will fund mesothelioma research to make new treatments a reality.
This donation is the largest ever to be made to the British Lung Foundation.
Our progress so far
We have a long history of funding UK-based research into mesothelioma, a deadly asbestos-related cancer that affects the lining of the lungs. We’ve already invested over £4 million on ground-breaking research in this area. This makes us one of the biggest funders of mesothelioma research in the UK.
The funding we’ve received over the last 5 years has helped us to transform the mesothelioma UK research landscape from one of neglect and disinterest into a thriving network of investigators committed to delivering real benefits to people affected.
Our work to date has set a solid foundation of mesothelioma research across the UK, which will allow us to really make the most of this upcoming funding opportunity.
The recent studies we’ve funded have produced some truly exciting results including:
New ideas for increasing the success of radiotherapy
The development of immunotherapy where the body’s immune system is boosted to fight the cancer
Using stem cells to accurately target cancer-killing drugs to the location of the cancer, while sparing healthy tissue.
The next steps
While there’s now a lot to be hopeful about, much more work is needed to translate these concepts from promising laboratory ideas to successful real-world treatments.
This means investing in further research, including clinical trials that will test new treatments in people, making sure that they are safe, effective and have the desired results.
This additional research will cost many millions of pounds, so we still need huge amounts of investment to turn new treatment ideas into reality.
Thanks to this funding from the Victor Dahdaleh Foundation, we have set up a Mesothelioma Research Network, and at the wishes of the donor, the University of Leicester and Papworth Hospital will be the first members. It will also include Imperial College – who earlier this year received the government’s £5 million pound investment to become a National Mesothelioma Centre.
By working together we are ensuring that mesothelioma research is joined-up and collaborative. We want to make sure that efforts aren’t unnecessarily duplicated, with researchers sharing data and pulling in the same direction, making the best use of the precious funds available.
This huge boost to funding and the new network is great news. It will accelerate research and bring us closer to effective treatments and, one day, hope for a cure for this devastating disease.
To help us continue to fund further research, we still need your support. Help us continue our work by making a donation today.
Exciting times for Research.
When Ian Lavery asked if we had any comments I asked if I could ask a silly. Could they spend just a little bit of money and research why I have had such a great result and no one else has had Mesothelioma Complete response.
Sir Antony was in complete agreement that they should look at my genes and bi-op and Reasearch why and he has taken all my details and will talk to Dean Fennel
Companies House
They are proposing to destroy dissolved companies records. –this cannot happen as we relie on these records for when Mesowarriors make a claim from their company.Also Insrance companies use them and Lawyers when suing for injuries etc.
Ian lavery Mp said it was more that it had been asked by some people and yes they didn’t understand just what that would mean to people and information so yes he has noted this and will action as the Police have also made it known they use the records as well when investigating Fraud etc.
HMRC work history delays
To receive a report on delays in receiving HMRCwork histories and to consider possible action.
Well I didn’t know what this really meant so I looked it up and there is a report —
The problem has been caused by those seeking access to older records of work histories, held on microfiche which can only be accessed on readers at HMRC’s Newcastle base.
This makes the task of accessing these records laborious and means it now takes 14 months for a claimant to receive a copy of their work history.
Mr Tyrie said: “HMRC needs to reduce these delays. Those who suffer from life-threatening diseases, such as asbestosis, deserve at least that.”
He added HMRC should be more transparent about how it priorities claims and the barriers that have led to the current delay.
Mr Tyrie said HMRC should supply its overall strategy and timetable for reducing the delay, and the specifications of the microfiche readers, including their model and manufacturer.
In order to claim compensation from former employers or their insurers, victims of occupational diseases need a full record of their employment history, including a work history produced by HMRC providing the name of their employer in any given tax year, going back decades.
But HMRC chief executive Jon Thompson said the microfiche machines are now operating far beyond their envisaged lifespan and when they break down they are difficult to repair as parts are not easy to find.
The problem is exacerbated by the fact many victims, particularly in the construction industry, will have been employed by many different employers over the course of their careers.
Living mesothelioma victims have their cases priorities by HMRC.
Laurie told how she had contacted Yuanda UK about the suspicions of imported asbestos products used in the UK and Products like cement could have Asbestos in them as the Australians have found. Yuanda are denying it is happening but it has uncovered the shortage of Trading Standards to do their job properly.
I raised the fact the Flask from China have got through. As I was sent a report so they are interested in me emailing the report over.
The Report from the Welsh Assembly couldn’t happen as no one turned-up ?
Mesothelioma Network
This was what I had gone to London Last week to be involved in the drawing up of this proposal.of bringing together a UK Coalition. Laurie asked me to give my opinion of the meeting. I said I was honoured to be involved and was amazed at how in the 7 years have been diagnosed things are really changing with so many people backing is mesowarriors that have the disease.
The idea is to bring together all the charities and groups in the UK and join the coalition so we all sing from the same hymn book and have a bigger voice to get things done.
This will need to be funded so the report was handed in.
Iban Newsletter was the last thing on the agenda. Laurie presented her 100th edition of the news letter.
I have been helping her in a small way to pass this around and have managed to get it to Australia and the Netherlands as well as several Universities Libaries.
I took it to al the conferences and meetings I went to.
Laurie handed it around and some of us joined in the photo that was taken
Then we showed our SOLIDARITY: Of British #asbestos activists with Italian colleagues –
We said our farewells and went to the pub for a drink and then we hd to go home in the rush hour. It was so bad with tube trains like Japan squashed in as the doors closed.
The we got on our train to Whitstable and it was packed. These poor people have to do it daily and I just don’t know how they do it.
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