A Diary of a Mesowarrior Living with #Mesothelioma #Asbestos – Christmas is over for 365 days looking forward to the New Year 2017

christmas-tree

We travelled up to Luton to be with family and was so surprised the journey was so good. We thought the day before Christmas Eve would be so busy.

We arrived all calm and relaxed. As everyone came in from work we had a family meal and a catch up on all the news.

Christmas Eve we went off to the British Legion for a night out and entertained by a very entertaining evening of all the music I love Our Son did the entertaining so that made it more special.people were so welcoming and we all had a Mince Pie with a difference, a huge tart with Minced meat in and then sponge topped off with a dusting of Icing sugar. Very nice.

Home to a hot chocolate and brandy and a lovely sleep.

Next day we all opened our presents and then a huge dinner that took all day to eat.

Boxing day after another meal we went down the M1 to London Hyde park.

Image result for ice palace hyde park

Image result for ice palace hyde park

Image result for ice palace hyde park

http://hydeparkwinterwonderland.com/#ZWzbL1uMp9s51vrl.97 

It was very packed so we drove off through the streets to look at the Christmas Lights

We couldn’t get near the Angels that I wanted to see.Lucky enough a Video oh You tube captures all the wonderful scenes we did see,

This Made our Christmas and we have had a great time.

Thanks to my loved ones for this magical time and all the hard work My DIL has put into this. I hope she sat down and relaxed when we travelled home. The traffic was not to bad on our side but the M1 and then the M25 was one solid jam on the other side.

London never relaxes and now neither does the roads.

We came home and opened our Secret Santas.

That is a  mankinie Ray wont let me photo him in it ha ha !!

Today where it was so icy there has been crashes everywhere with a bad on our Coastal Road here in Thanet.

Please drive careful tomorrow its going to be bad again.

 

 

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos Last of the Xmas Shopping done, Julie Roberts Story of Her Father, A Great members debate tackling Mesothelioma in Scotland in the Scottish Parliament. #ENDmeso

xmas-card-4

Christmas is nearly upon us so I expect you are all so busy getting the last presents in and the last food shopping as Ray and I did yesterday. I keep saying its all done then something crops up. Like I had bought a jumper for Ray. I’m sure I have bought a jumper for Ray. I have hunted everywhere and the conclusion is I must have wrapped it up as a present for my son. He must have 2 jumpers now !!

So I went to get yogurt to have plenty in the fridge and tesco had a sale on and I bought 2 jumpers for Ray and 3 for me!! Oh dear!!

Really thrilled to see another trial has opened http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-higher-dose-radiotherapy-to-treat-pain-caused-by-mesothelioma-systems-2

We need more treatment for pain as it is the one thing we all suffer with as the tumours are in the Lung and there are so many nerves there causing so much pain. Even I still get pain and mine have shrunk to nothing but the nerves are damaged so I’m pleased to see a pain trial.

There was a great members debate  tackling Mesothelioma in Scotland in the Scottish Parliament.

It was Live reported and I watched it enthralled as it was very well covered by passionate members of all parties

Kezia Dugale Leader of the Scottish Labour Party and MSP for the Lothian Region chaired the meeting so professionally and with such compassion but the name that kept coming up was Julie Roberts who is fighting such a great campagne in Scotland I was so proud of her. We have met in London very recently and I look forward to meeting her again.

I could see her and her lovely Mother with other Mesowarriors in the Gallery with Lorraine Creech, Senior Mesothelioma Clinical Nurse Specialist at University Hospital of South Manchester and a Mesothelioma UK Nurse she was busy writing notes. I have hunted the papers today for a report but I cant find anything but I bet someone will write about the actual debate.

Here is Julies Story :-

Macmillian Guest post: Why mesothelioma matters 19 Dec 2016 2:00 PM

Julie lost both her dad and uncle to mesothelioma last year. Here she talks about her campaign to tackle mesothelioma in Scotland and why it matters. She is a Communications professional and lives in Edinburgh.Julie and her dad

“I haven’t done anything wrong.” It’s what my dad kept saying over and over again. And he hadn’t. Like thousands of other hard-working men up and down the country, all he’d done was get up and go to work every day so he could provide for his family; nothing out of the ordinary there. It was exactly the same for my uncle.

My name is Julie and last year my life was changed forever when I lost my uncle and my dad to mesothelioma, both within eight short weeks of each other. They were 69 and 68 respectively; newly retired, doting grandparents.

Mesothelioma is an aggressive and deadly form of lung cancer caused by exposure to asbestos. My dad contracted it working as a joiner all of his life, and my uncle through his trade as a plumber. It was as simple as that. No lifestyle factors at play, no genetics. They just went to work.

Since May this year I’ve been campaigning to raise awareness of mesothelioma in Scotland after I found out that the Scottish Government’s Cancer Strategy ‘Action & Ambition‘, released in March 2016, doesn’t reference the diagnosis once within its 60 pages. This is despite the fact that the UK has the highest rate of the disease in the world.

My campaign started with a letter I wrote to Scottish Championship football club Hibernain F.C., the club my dad supported all his life. In April this year, they launched a short film called ‘Life With Hibs’ (nickname for the Club). It struck such a chord with me that I wrote to tell them about my own life with Hibs; that every week, from about the age of 13, I used to go and watch Hibs play at Easter Road with my dad.

At the same time the Club launched a community health partnership with NHS Lothian called GameChanger, so I asked if they might be able to help raise awareness of mesothelioma through this. Very unexpectedly the Club turned my letter into a short film called ‘Life With Hibs – Julie’s Story’. The response I got was incredible and since then I’ve tried to take advantage of every positive opportunity that’s come my way.

I’ve been invited to the Scottish Parliament by the Leader of the Scottish Labour Party to talk about my campaign; I’ve partnered with Scottish Hazards, a leading Health & Safety at Work charity, and have spoken at their events; I met with the Managing Director of Mesothelioma UK to discuss how I can try and help the charity deliver on their five-year strategy through the work I’m doing. I’ve reached out to and consulted with leading medical professionals, charities, lobby groups, lawyers, campaigners and politicians in Scotland to ask them to back my campaign. I’ve written guest posts, like this one, and used my social media channels to build momentum.

At the start of November, my efforts culminated in a roundtable discussion on ‘Tackling Mesothelioma in Scotland’ that was held at the Scottish Parliament. I brought together leading experts in the field of mesothelioma, asbestos and industrial-related disease, to talk about the issues they face on a daily basis.

Following that discussion, a motion has gone before the Scottish Government on tackling mesothelioma in Scotland. Having written to all 129 of our MSPs asking them to back it, the motion has achieved Cross Party support from all five of Scotland’s political parties – a great start to acknowledging that mesothelioma matters. A debate will now take place in the Scottish Parliament on 20th December. I remain optimistic that the Scottish Government will acknowledge that mesothelioma matters; that it is just as worthy of ‘action and ambition’, and that positive actions can be taken forward so we can start to make a real difference for others, not just here but the world over.

The more I have looked into and learned about the political, economic and social aspects of the disease, the more I want to make a difference. There is no doubt that mesothelioma is a hugely underfunded cancer; a ‘Cinderella’ cancer. And whilst I appreciate money largely influences most healthcare decisions, no cancer or human life should ever have a price tag put on it. I would like the Government to acknowledge that mesothelioma matters because my dad and uncle mattered to me.

https://community.macmillan.org.uk/blogs/b/community_news/archive/2016/12/19/guest-post-why-mesothelioma-matters

A Diary Of A Mesowarrior Living With #Mesothelioma #asbestos – Ray Had to go to Hospital Today for Back Op, I was The Carer The Tables Are Turned, I Met Father Christmas.

We had to get up so early to get To The Spencer Private Hospital Margate by 8.30 for rays Op

It was like walking into a hotel as James the Male nurse took ray up to his room. I was very impressed

https://www.facebook.com/spencerprivatehospitals/videos/760595607350962/

Rays room was lovely with wallpaper on the wall behind the bed was a nice homely touch

 

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After he had signed his permission for the Op he changed into the night-gown and sat in bed. This was then wheeled down to the Operating theatre.

With a TV for amusement I sat and watched the Sunday Politic program’s and was almost dropping of the sleep as he was wheeled back in wide awake put had hated the painful op. He had been given the choice of knock out drug but had been so brave in saying no, then wished he hadn’t been so brave.

Epidural Steroid Injections

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When he got dressed to come home after a rest I could see the war wounds. The injections went in where the arrows are pointing.

http://www.spine-health.com/treatment/injections/lumbar-epidural-steroid-injections-low-back-pain-and-sciatica

photo_20161218_120515

A brave little soldier as he did feel so much better. He has to allow a few days for the steroid injections to soak in the nurse said. We went off and had a dinner in the Oyster Bed

oyster-bed

Father Christmas came over and spoke to me and wished me a merry christmas and what did I want for Christmas. I said nothing I have had my present this year -My life!!.He gave me a hug and had his photo taken with me xx

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I said I would put him in my blog but no one will recognise him as he is in disguise.

So that has started my Christmas off just lovely

Ray has come home and is now resting as the local anesthetic’s are wearing off so there is a pain again but not in the damaged area.

I must admit it has been the shoe on the other foot today and I became the carer. It is a hard job as you worry and just want to take the pain away from your loved on. I know now just how Ray has been feeling  and so many times I have put him through the worry.

My brian worked overtime and I had planning in my head for if the op goes wrong and I have to go home on my own and then come back again tomorrow. We just can stop our minds going on with a what if story and how we will have to cope.

Than you sit there and Ray wasnt answering the questions properly as he hadn’t heard it right as the Doctor was from abroad and his accent was very strong. So I found myself butting in but the Doc didn’t want me to answer so he dint look at me. Now that something Ray was always saying that as a carer people glossed over his being there.

When you are a carer you spend a lot of your time focusing on someone else. It can feel unnatural to think about yourself and your needs. But it’s important that you look after your own wellbeing too. Taking positive steps to look after yourself can help you avoid physical and mental health problems. If you are able to stay well, you are more likely to be able to provide good support for longer, without getting too overwhelmed. So looking after your wellbeing is good for you and the person you care for. Here are some ideas about how to do this:

It can be really important to have someone to talk to, especially if you’re struggling to cope. Think about the people in your life you can turn to for support. You may have a family member who helps you relax, or a friend who is good at taking your mind off things.

You may find it hard to ask for help or tell people how you’re feeling. Time to Change has some ideas about how you can start the conversation. If you don’t have time to meet up with people, you could try to stay in touch by email or text, or use online video chat.

Lucky enough Ray is going to get better but what about all the Carers that look after a Mesowarrior

Try to take a break when you need it, especially if you are worried about your own mental health. Having some time away from caring can help you feel refreshed, and enable you to manage your own mental health.

It can be hard to make a decision about when to take a break, especially if you feel guilty or worried about what will happen to the person you care for while you’re not there. You may feel more able to take a break if you ensure that the person you care for knows what to expect and has any other support they need. This may mean asking the person you care for to find ways to cope without you for a while, or arranging for family and friends to help cover your caring responsibilities. If you need some help to organise a break, you could find out more about respite care (see section under How can I get help? to find out more) or ask your local social services for support.

The length of your break will depend on how you are feeling. You may only need an hour or two to clear your head, or a day to help you feel more rested. You could go out, take a bath or turn your phone off for an agreed period of time.

It may be helpful to build a regular break into your routine. This can help you make plans in advance, give you something to look forward to and ensure that the person you care for knows what to expect.

You may find that you need a longer break, especially if you are worried you might be becoming unwell. At this stage, you may want to think about respite care.

Make time for yourself

Spending quality time with your partner, family or friends can give you a break from your caring responsibilities, help you stay positive and boost your confidence. Try to make time for the things that you enjoy, for example going for a coffee or a short walk.

Take time to pursue hobbies and activities that interest you or make you feel fulfilled. Try to do something regularly, like a yoga class or going to the cinema with a friend.

I get up half an hour early to do my own thing and start the day as I like to.

Try to be organised

Finding a way to feel in control of your responsibilities can help you manage feelings of stress and anxiety. You could:

  • Make a schedule or planner – keeping a schedule of the key parts of your day-to-day routine, such as bathing, cooking or taking children to school, can be very helpful. You could also plan in more detail, for example, by keeping shopping lists and a schedule of meals if cooking is part of your role as a carer.
  • Keep important information in one place – for example, emergency contact details and information about medication (see Self-help resources). You could make sure someone else (such as a social worker, friend or family member) also knows where this information is kept in case it is needed when you are unwell or not at home.

Be realistic about what you can do

It’s important to be realistic about what you can do. If you take on too much, you may feel like you never get to finish or achieve anything. You may want to make the person you care for better or take away the impact of their illness, and feel very upset that you can’t. This can lead to stress, anxiety, guilt or low self-esteem. Having a clear idea about what you can do, and accepting parts that you can’t change or do alone, helps to reduce this stress and can make you feel more able to cope.

You might find it helpful to:

  • Make a list of the kind of support the person you care for needs – this helps to identify what needs doing and can give you a clearer idea of how much support the person you care for needs.
  • Identify what you can do, and what you need help with. Work out a plan with the person you care for about who will provide the care you can’t. For example, you may need medical support or some professional care.
  • Think about how you will be able to tell when things are getting too much and you need a break. For example, you may struggle to sleep when you’re feeling low and this could be something you notice as a sign that you need a break. You could write these signs down as a reminder to yourself (see Self-help resources). You may also want to share them with someone you trust and ask them to let you know if they recognise that you are becoming too stressed and need a break.

Make sure you have all the information you need

Making sure you have access to reliable, clear information can help you feel more in control. This could be medical information about any diagnoses the person you care for has, or advice about your rights. If you’re not sure where to find this, looking online or asking your GP are both good starting points.

Plan for appointments and take notes of things you want to talk about. This will help you remember what you want to say and to get the information you feel you need.

Medical language can be really complicated, so don’t be afraid to ask for further explanations if you don’t understand. You can look at the National Institute for Health and Care Excellence (NICE) guidelines which give official recommendations about treatment.

If the person you care for has a mental health problem, you could have a look at Mind’s information booklets, either online or in print. You could also look at the Mental Health Foundation and Rethink websites. The Carers Trust and Carers UK have lots of information specifically for carers, and forums where you can exchange ideas with other carers.

Find positives in your relationship

Being a carer can have a big impact on the relationship you have with the person you support. Sometimes you may feel very close and connected, while at other times you may feel distant or irritated with each other. It can help to talk openly and honestly to find ways of coping with these challenges together.

For example, you could try to:

  • think of yourself not only as their carer but also as their friend, partner or family member
  • talk to each other about how you will strengthen and maintain positive parts of your relationship
  • see each other as whole people, with interests, characteristics and hobbies
  • try to do nice things together, as well as carrying out day-to-day responsibilities – this will help maintain your relationship outside of being a carer, and help you connect on a different level
  • think about what you get out of caring, and write down a list of positive things that you can look at when you are feeling frustrated or low
  • recognise practical and specialist skills and knowledge you have gained, or people you have met that you wouldn’t otherwise get to know.

Focusing on these positives can help you feel that you have a deeper relationship and understanding of the person you care for, and appreciate that they may feel this way about you too.

I would urge anyone who is a carer to try to see the positives in your situation and to realise you are there out of love and respect for the person you are caring for.

Support the independence of the person you care for

Work with the person you care for to see how they can help themselves. Together you may be able to enable the person you care for to make some decisions about their care on their own, and identify times they can cope on their own. It is important to try to respect the opinion of the person you care for and help them have some control over their care. This could mean making sure their wishes are expressed to doctors, or letting them try activities on their own. You may find that this means taking a step back, or supporting decisions that are not what you would do. But this could help the person you are caring for feel respected and in control.

You may also find it helpful to talk about what support they would like from you. This may change over time, so it’s worth revisiting this conversation.

Make a crisis plan

If you are concerned about what would happen if you become unwell, having a crisis plan in place can help to reduce stress (see Self-help resources).

Thinking about the following things when you are well can help you feel prepared for a crisis:

  • Discuss what will happen in an emergency with the person you care for, and agree a plan with friends, family or paid care workers.
  • Write a list of who should be contacted in the event of an emergency and keep it somewhere easily accessible.
  • Leave details about your caring responsibilities, such as medication you normally give and ongoing treatment the person you care for is having, and make sure someone else knows where this information is. This could be a friend, family member or health or social care professional.

You are all the unsang heroes in my eyes. You dedication for you loved ones is just wonderful and you patient does appreciate it even if they don’t say so. It’s not easy to watch a loved on suffer you can feel so helpless. Give a huge hug everyday and always keep telling them you love them.

We Mesothelioma Warriors Raise a glass to our carers and say a huge Thank You xx

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http://www.mind.org.uk/information-support/helping-someone-else/carers-friends-and-family-a-guide-to-coping/how-can-i-look-after-myself/#.WFa_GVy-18E

 

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos story told by Cyber friend Sandy Kinart. Ray Is Already For His Op Sunday

 

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Yesterday was a great day for Canada’s Asbestos Support groups who have been working fo the ban of asbestos for so long.

Todays papers and social media was full of the news. Its funny I don’t know where I was when we had Asbestos Banned by our Government. It really hadn’t played a part in my life at that point. How wrong I was and how I was soon to find out just what the  word asbestos was going to play a huge part in my life along with the word Mesothelioma. I feel for the Canadians that will be on the same pathway as myself and all the Mesothelioma warriors around the world. I pray they will get the drugs that are needed.

I hope they put more money into research for these drugs. The world needs to be able to cure cancer.

http://www.theobserver.ca/2016/12/15/action-by-ottawa-welcomed-by-sarnia-activities

On story did stand out and that was my Cyber friend Sandy Kinart who had a great article written The late Blayne Kinart A lovely Meothelioma Warrior  and his wife Sandy Kinart are shown in this file photo looking at photos of Blayne included in a photo documentary titled Workers: Life and Loss, on display at the OHCOW Clinic in Sarnia. Blayne died of mesothelioma, a rare cancer caused by exposure to asbestos. Sandy, a member of the Sarnia group Victims of Chemical Valley, was among those in Sarnia welcoming news Thursday that Canada plans to ban use of asbestos by 2018. File photo/ THE OBSERVER

Sandra said “This has been a very long time coming,” she said. “I am ecstatic, and over the moon.”

The material was used heavily in industry and construction, and the incident of mesothelioma in men in Sarnia-Lambton, between 2000 and 2009, was approximately five times the Ontario average, according to the Ontario Cancer Registry.

It is great to see a warriors story being covered on such a day in history.

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I seem to be underway with christmas but it’s not helping with Rays hospital op on Sunday. We have to get that over with to then know what he will be like. Hopefully it works and he wont be in pain anymore and we can enjoy a lovely family Christmas.

We went shopping –well Ray did and I walked Louise around and then wiped the car down as I’m fed up with the mud and dirt. Everywhere seems so muddy. Roads have been dug up and produced more mud it really needs a huge downpour to wash it all away.

I have taken a call from Rays Nurse and I thought Oh! no its cancelled but it was just to say he has to go to a different Dept as the have moved things around and found space for him in a different ward.

It was a good job they did find as she didn’t know his time had been changed to 8.30am and was telling me to go at 11.30am. So that is all sorted.

I have to pack his PJ’s and dressing gown and slippers. He is getting nervous and funny enough his back is bad today. We cant wait to get it sorted.

 

 

A Diary Of A Mesowarrior Living with #Mesothelioma. Celebration Canada Bans #Asbestos And A Guest Blog From Helena Pekar

Federal government moves to ban asbestos by 2018 So many Asbestos Activists are celebrating today –This is a good day as with a bit of luck this will shame the US into following

by Canadian Press

Posted Dec 15, 2016 8:58 am EST

Last Updated Dec 15, 2016 at 9:10 am EST

Michelle Cote’s father, Ken, recently died from asbestos-related mesothelioma. Jason White

OTTAWA – The federal government is moving to ban all products containing asbestos by 2018.

The comprehensive ban is designed to include construction materials and brake pads that currently use the cancer-causing agent.

Even minute amounts of asbestos fibres can cause lung cancer or deadly mesothelioma, an aggressive cancer.

Thousands of Canadians continue to suffer from the long-term impacts of decades of heavy asbestos use.

Canada closed its last asbestos mines a decade ago, but has continued to obstruct international efforts to list it as a hazardous substance.

Science Minister Kirsty Duncan says that stance will change in the next Rotterdam Convention

Today is a great day as Canada

http://www.1310news.com/2016/12/15/federal-government-moves-ban-asbestos-2018/

(Revised October 16, 2016)

National Asbestos Bans:1

Algeria Denmark Ireland Mozambique Seychelles3
Argentina Egypt Israel Netherlands Slovakia*
Australia Estonia Italy New Caledonia Slovenia
Austria Finland Japan New Zealand South Africa
Bahrain France Jordan2 Norway Spain
Belgium Gabon Korea (South) Oman Sweden
Brunei Germany Kuwait Poland Switzerland
Bulgaria Gibraltar Latvia Portugal* Turkey
Chile Greece* Lithuania* Qatar United Kingdom
Croatia Honduras Luxembourg Romania Uruguay
Cyprus* Hungary* Malta* Saudi Arabia
Czech Republic* Iceland Mauritius Serbia

Notes. Singapore and Taiwan were removed from the ban list (Oct 2010) as a result of information received.

Mongolia was removed from the ban list (August 2012) as a result of information received detailing the cancellation on June 8, 2011 of the Mongolian Government’s Resolution No. 192 banning asbestos which was issued on July 14, 2010.

http://ibasecretariat.org/alpha_ban_list.php

Laurie has updated her list today she must be so happy http://ibasecretariat.org/chron_ban_list.php

Laurie Kazan-Allen Retweeted Canadian Labour

Thanking Canadian Labour & all the union groups, victims and ban activists in GREAT JOB!

Lauries Blog Is here

http://ibasecretariat.org/press-release-historic-canadian-asbestos-ban.pdf 

There are so many Organisations Publishing their thoughts and Congratulations here is ADAO http://www.asbestosdiseaseawareness.org/archives/42226

Press Release: ADAO President Congratulates Canada on Comprehensive Asbestos Ban by 2018, Sees this as Opportunity for U.S. to Swiftly Follow Suit

For Immediate Release: December 15, 2016

Asbestos Disease Awareness Org. President Congratulates Canada on Comprehensive Asbestos Ban by 2018, Sees this as Opportunity for U.S. to Swiftly Follow Suit

A Major Producer and Consumer of Asbestos for Decades, Canada Now Becomes the Leader in Movement for an Asbestos-free North America

The Twitters are great I will be reading all night

I have a guest blog today

Picture from web.

Asbestos – What do I really need to know?

This fluffy green stone in front of you is serpentine asbestos in its natural form. In fact – asbestos is a naturally occurring mineral formed by a unique combination of 6 other minerals that are also found in the nature today. This unique formation caused by natural grouping of minerals has given asbestos its beautiful and its deadly crystal fibre structure.

Asbestos does not dissolve in water, it does not evaporate, it is resistant to heat, fire, chemical and biological degradation in any form, it is sound proof and it is a great binder. The word Asbestos itself is a translation of other words used by the ancient Greeks and Romans, who are believed to be the first people on earth to have ever used asbestos in clothing and construction purposes.

The ancient world was all fascinated with the unique, mystical, miraculous and strong mineral. Asbestos used to be almost as valuable as gold, and was often seen as a present from the gods – and used in various rituals to illustrate their magical powers (a trick that was also used in the Medieval Era). With the time, the ancient doctors started noticing and documenting “Sickness of the lungs” in slaves who worked in the asbestos mines – and the damage caused by asbestos has slowly started to reach the surface…

Although they were the first to use it so widely for their time, the ancient Romans and Greeks were not the first to find asbestos. There is evidence of asbestos mining from as early as 4,000 years ago – and the greatest peak of popularity of asbestos was during a phase we now call The Industrial Revolution (About 260 years ago). Due to the same amazing qualities of asbestos that have once fascinated the ancient Greeks and Romans so much, asbestos has soon become a major commercial item again, and this time it was commonly used as an insulator for high temperature products like ovens, steam pipes, turbines and more. Asbestos mines started opening up all over the world – And by 1,900 (this time modern doctors) started reporting lung sickness and pulmonary fibrosis in asbestos textile factories and asbestos mines workers. By WWII asbestos was already used in ships, cars, cement and more.

Today you can still find asbestos in floor and ceiling tiles, roofs, siding, insulation, cement, joint compounds, electric boards, fire places, walls and more. If not touched or disturbed, well colour-coated and in good condition – asbestos is usually not considered an immediate risk to health, however anyone who disturbs an asbestos containing material, or is exposed to a disturbed asbestos – can be seriously affected.

If you suspect that you may have asbestos in your building – It is very important that you have it surveyed and removed if required by an authorised asbestos professional. Do not make any attempts to remove the asbestos yourself.

There is no safe level of exposure to asbestos, and the smallest amount can lead to fatality within 10, 15 or 20 years. The visible fibres of asbestos composed of millions of microscopic fibrils that can be released by various movements and enter the body – once inhaled, the fibres cannot come out and they cause critical damage including Asbestosis, Pleural Effusion, Atelectasis, Mesothelioma, Lung cancer, Pleural plaques, Diffuse pleural thickening and more.

According to the recent World Health Organisation estimates, more than 107,000 people die each year from asbestos related sicknesses. Asbestos is now banned in 55 countries worldwide, but not in China, Russia, India, Canada or the US.

Have I mentioned asbestos cigarette filters?? 🙂 You might want to google that!!

Asbestos has not been used in domestic building materials in Australia since the 1980s and was officially banned in Australia on the 31 December, 2003. It is illegal to import, store, supply, sell, install, use or re-use any asbestos containing materials in Australia.

Remember – Asbestos looks differently to other building products and is often easy to recognise when exposed. Search the internet and the books to find out more about its unique specifications – always report about asbestos but never touch it yourself. Your little discovery – can save lives!

Stay safe guys!!

Helena

https://www.linkedin.com/pulse/asbestos-what-do-i-really-need-know-helena-pekar?trk=mp-reader-card  

A Diary Of A Mesowarrior Living With #Mesothelioma -London Lights, Rays Op on Sunday, #Asbestos Surveys, MesoUK National Audit for Mesothelioma

 

We are really getting into the christmas spirit and the presents are all bought and the secret santas posted for the Mesowarriors.

Fist we have to get Rays Op over with on Sunday.

He has all the appointments. One was for today for the pre-assestment. Not like the old days a visit to the hospital, no! its done on the phone so he had that today and seems he has passed that. They are concerned about him fasting before the op (As he is Diabetic type 2) so an appointment for 2.30 Sunday has become a 8.30am which means we have to get up early to travel the 25 miles to Ramsgate.

Epidural steroid injections (ESIs) are a common treatment option for many forms of low back pain and leg pain. They have been used for low back problems since 1952 and are still an integral part of the non-surgical management of sciatica and low back pain. The goal of the injection is pain relief; at times the injection alone is sufficient to provide relief, but commonly an epidural steroid injection is used in combination with a comprehensive rehabilitation program to provide additional benefit.

Most practitioners will agree that, while the effects of the injection tend to be temporary – providing relief from pain for one week up to one year – an epidural can be very beneficial for a patient during an acute episode of back and/or leg pain. Importantly, an injection can provide sufficient pain relief to allow a patient to progress with a rehabilitative stretching and exercise program. If the initial injection is effective for a patient, he or she may have up to three in a one-year period.

I wonder why they don’t use this for Mesothelioma pain more. A question I will ask.

It must be better than all the drugs we take.

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We get many Pictures from the men working in  Asbestos striping and this was a great one as it makes you realise how we must be so careful as here it is in a door frame, we must always be on our guard when drilling in DIY.

Danny Whiting North Kent Asbestos Services Ltd wrote –
Squeezy does it!. Cosy for space but another domestic property free of Asbestos Insulation Board, for a local MP. Removed safely under fully controlled conditions.

Then My Friend Greg ( who is always taking great photos and lets me share them each day found this on site.

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Yes that’s Asbestos and Ray said we have had a sink with the black on the bottom like that.

What had amazed me yesterday is where he had to survey a site.

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How  would you even begin to sort that. Dont forget you have to survey the earth as well as it could be anywhere in a site like that.He said he could feel the fleas biting him. Bless.

http://www.rbasbestos.co.uk/

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I have to say  Congratulations to Mesothelioma Uk for all the hard work involved National audit for Mesothelioma would likely be lost if it were not for Mesothelioma UK’s financial support so thank you for all you do for the charity. This work is vital to our patients; to improving standards and outcomes across the nation.

The audit contains data from over 2,000 patients diagnosed with mesothelioma in England during 2014. Findings and recommendations from the report will be used by trusts to develop and improve the care and treatment offered to patients.

https://www.rcplondon.ac.uk/projects/outputs/national-lung-cancer-audit-pleural-mesothelioma-report-2016-audit-period-2014

My Dear friend Dr Mike Peake is featured in the report.

While we are talking about Mesothelioma UK I have been raising Awareness of the Funds that are needed to back all the great work Liz Dawlinson Jill Lemon and The Nurses do for Mesothelioma and they sure need more funding so maybe you could think of donating if you’re not sending Christmas cards this year as so many people are doing this nowadays. Please donate for Xmas to @MesoUK by filling in your details.secure online payments provided

http://www.mesothelioma.uk.com/…/s…/mesopayment/donation.asp

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A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos My Blog Of the Book Launch At The Statue Of Mary Seacole.

On Wednesday we had a trip to London as we had a personal invite to the book signing of Mary Seacole.

Firstly I have to show you the Tattoo A mesowarrior had done he had asked if he could copy Rays Mesowarrior Picture he did for us warriors and of course I agreed

Hi my name is Gary Martin from Newcastle Upon Tyne and have just turned 60 years of age on the 20th August this year.
On the 14th February 2013 me and my family got the worst news we could imaging after taking really bad in December of 2012 and spending time after that in the Freeman hospital here in Newcastle, having my lung drained and biopsy done, we found out I have mesothelioma cancer.
I had chemotherapy and after 5 lots got told it was now stable.
Since then I decided to live my life to the full and enjoy every minute with my wife, enjoying going to lanzarote for a week as much as once a month.
On the 27th October this year we were hit with more bad news that it has started to grow and spread.
I am currently waiting on decisions weather is will be having more chemotherapy or possible new trail.
2nd time round we as a family have took the news better and will fight this all the way.
In doing this i decided to show this horrible disease that am fighting it all the way with a new tattoo of Mavis Nye fighting with mesothelioma UK designed by her husband.
She tells me I am the first person to have this done and proud to have it.
We will fight this together and nothing will stop us!!

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I have been to St Thomas Hospital before to see the Statue so I knew just where to go but on coming out of the tunnel to Westminster pier my breath was taken away by the lights of London at night.

The London Eye looked so different as it was bathed in red blue light against the night sky.

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We walked over the bridge to the south bank where St Thomas hospital stands. Just as we got to the Florence Nightingale Museum Our friends from Moore Blatch drew up but were so busy getting things out of the car we just went in and was greeted by so many people.

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Than the book was launched and I have my copy all signed by the Author Lord Soley and Martin Jennings the Sculptor. As well as Trevor Stirling a Trustee who when making a speech right at the end Pointed me out as  modern day Mary Seacole with my fight for life and all the work I do for the NHS, Meothelioma and Asbestos. I couldnt speak I was near to tears Bless him !!! he has always encouraged me to keep fighting and Im so proud to call him a friend. xx

We  mingled and chatted until we put on our coats and went to see the statue

We had stopped at the Statue as we came in as I so love her.

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i have seen her in the daylight but somehow at night there is a more mystical look about her as she strides over the uneven ground with  her satchel of medicines for the men in battle.

The Round disk at the back is cast from the ground where she did her work and there is an actually glass inbeded from her bottles that were found at the time all these years later.

We wer told by Martin Jennings last night her toe and is shinning as children  have been rubbing it as they play around the statue. and also at the bottom of the disk. He doesn’t mind as he loves the fact the children find it touchy freely.

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So that was a wonderful evening all over with and Ray and I walked back to the underground and then a train straight home we were so tired as we got in at 10.30pm

I have put all photos here for a record of the night

A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos — My report on the Vienna IASLC #WCLC 2016 Lung Cancer Conference.

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Dr. William Travis discusses the content of a poster session w/ Japanese surgeons.

It has been a very busy week as I found the IASLC WCLC 2016 Lung Conference in Vienna so interesting.

I knew Merck were going to Publish My Trial Results MK3475-28 so I watched through each day and Tweeted all the Info I could to also share on my mesothelioma One Stop group on Face Book.

My Own Doctor Shah came up trumps for me with the picture that told a thousand words.

Immunotherapy cause a huge interest all week and the room was packed out with many even standing out side.

Merck had released this at the same time http://www.mercknewsroom.com/news-release/oncology-newsroom/updated-keytruda-pembrolizumab-data-small-cell-lung-cancer-and-mesoth

I was so proud I had taken part but a little perplexed as to why my result of C/R wasnt there. I’m asking the question everywhere as I don’t understand. Wasnt I finished in time ???

Press Conferences are at this link https://www.iaslc.org/news

Abstract Library is NOW OPEN

Access to abstracts is free of charge and can be viewed through the IASLC Virtual Library. Except for a select few presentations under embargo until their scheduled session time, all abstracts are now available

http://library.iaslc.org/virtual-library-search?product_id=6 

As if this wasnt enough we have the Audit of 2014 from Mesothelioma UK

Overview of the results The audit collected data on 2,179 patients who were diagnosed with MPM in England in 2014, with a median of 13 cases per year for secondary care hospital trusts. This is the first national cancer audit to use Cancer Outcomes and Services Data (COSD) and cancer registry data directly to identify patients, which has enabled all cases of pleural MPM diagnosed in 2014 to be included in the audit.

The cancer registry data was supplemented with some data ssubmitted using the bespoke lung cancer dataset known as LUCADA. In view of the fact that a minority of hospital trusts submitted data solely via COSD and are thus not directly comparable, this 1-year interim report summarises results at national and strategic clinical network (SCN) level only.

Recording of key audit data is good, but variation exists in the data completeness of stage, performance status, multidisciplinary team (MDT) discussion and access to lung cancer nurse specialists (LCNS) across networks.

Although the overall pathological confirmation (following analysis of a tissue or fluid sample) of MPM is excellent (100% of cases), nearly half of MPM patients still receive an unspecified MPM diagnosis with no pathological subtyping. It is important that hospital trusts seek to improve this, since pathological subtype influences prognosis, and may affect eligibility or stratification for entry into clinical trials and response to systemic treatment.

In general, anti-cancer treatment and use of palliative chemotherapy has increased since the previous audit with 36.5% of all patients receiving it compared with 34% in the first report. In particular, for patients with good general health (performance status 0–1), chemotherapy delivery has increased to 53.5% cases compared with 41% previously. However, there is marked network variation ranging from 42.2% to 77.4%, which should be addressed.

Use of radiotherapy for MPM appears to have reduced since the last audit and was received by 16.5% of patients compared with 29% in the 2014 report.

Although the use of radical surgical treatment is extremely low in England, debulking surgical procedures (surgical removal of as much of a tumour as possible) in general do appear to have increased since the previous audit from 2.3% to 5.2%.
https://t.co/1Ovo0Iohab

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I will blog yesterdays Great Adventure in London later as there is to much to write about here

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos #Ketruda Results at the World Lung Conference in Vienna this week.

As one of the top mesothelioma specialists in the United States, Dr. Kindler has been a leader in developing treatment for mesothelioma patients.

About Dr. Kindler

Hedy Lee Kindler, M.D., is a cancer expert with years of experience studying and treating mesothelioma. She sees more than 100 mesothelioma cases a year and continues to bring on new patients with the hopes of helping as many people as possible. Many of her patients come from all over the world to seek her experience and guidance.

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    Medical Degree and Residency

    MD State University of New York Buffalo, 1989. Dr. Kindler completed residency at UCLA Medical Center Internal Medicine from 1989-1991.

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    Professorship

    Assistant Professor of Medicine University of Chicago Medical Center

Dr. Kindler’s father passed away from mesothelioma in 2001, which sparked an even stronger interest in finding ways to battle the disease. Much of her focus is on new treatments and drugs like Alimta and gemcitabine.

A champion for mesothelioma recovery, Dr. Kindler has traveled extensively, proving theories and treatments for these conditions to medical experts worldwide. She is frequently invited to speak on the latest findings and treatments available in asbestos-related diseases.

Although her emphasis is on mesothelioma recovery and treatment, Dr. Kindler also specializes in the medical treatment of pancreatic cancer and gastrointestinal stromal tumors.

Dr. Kindler’s Accomplishments

Kindler is a member of the American Association for Cancer Research, the American Society of Clinical Oncology, the International Association for the Study of Lung Cancer, the International Mesothelioma Interest Group, and the Mesothelioma Applied Research Foundation. Additionally, Dr. Kindler is a two-term (2006-2010) past president of the International Mesothelioma Interest Group and is an associate editor of the medical journal, Lung Cancer.

Dr. Kindler’s Clinical Research

As Dr. Kindler has a personal interest in the treatment of mesothelioma, much of her research is focused on novel treatments. This research holds potential to not only improve the survival times of patients but also lead to more personalized treatment options.

“The Role of Gemcitabine in the Treatment of Mesothelioma”

Dr. Kindler published this article back in 2002 to discuss the efficacy of the chemotherapy drug, gemcitabine, as a single agent or in combination with a platinum-based chemotherapy drug. What makes the article interesting is that Dr. Kindler suggests other roles the drug may play. The most notable role she suggests in the study is gemcitabine in combination “with other cytotoxic chemotherapy agents such as pemetrexed or vinorelbine, or adding novel cytostatic agents…such as bevacizumab.”

Semin Oncol. 2002 Feb;29(1):70-6.

The role of gemcitabine in the treatment of malignant mesothelioma.

Author information

 Abstract

Gemcitabine is broadly active in a variety of solid tumors, including malignant mesothelioma. In vitro, gemcitabine demonstrates activity against mesothelioma cell lines. The role of single-agent gemcitabine in patients with mesothelioma is unclear, since three phase II trials treated a total of 60 patients and achieved response rates of 0%, 7%, and 31%. The combination of gemcitabine and cisplatin is synergistic against mesothelioma cell lines in vitro. Gemcitabine in combination with cisplatin or carboplatin shows definite activity in phase II trials. The trial by Byrne and colleagues that demonstrated a response rate of 48% established the combination of gemcitabine plus cisplatin as a standard therapy for this disease in the United States. Subsequent multicenter trials have achieved lower response rates of 26% and 16% for this combination. Gemcitabine plus carboplatin also has activity. Future roles for gemcitabine in malignant mesothelioma patients include incorporating a gemcitabine/platinum regimen for neoadjuvant or adjuvant therapy, combining it with other cytotoxic chemotherapy agents such as pemetrexed or vinorelbine, or adding novel cytostatic agents such as the vascular endothelial growth factor (VEGF) inhibitor, bevacizumab, to the gemcitabine and platinating agent combination.

“Moving Beyond Chemotherapy”

Following her article in 2002, Dr. Kindler published an article 2 years later titled, “Moving beyond chemotherapy: novel cytostatic agents for malignant mesothelioma.” The study evaluated the efficacy of novel drugs such as bevacizumab, which work by interfering with the signaling pathways that affect mesothelioma cell growth. Years later, this research has shown to have a significant survival benefit to mesothelioma patients.

Abstract

It is now known that vascular endothelial growth factor (VEGF) and platelet derived growth factor (PDGF) are autocrine growth factors in malignant mesothelioma; epidermal growth factor receptor (EGFR) is also highly overexpressed. Cytotoxic drugs that target these growth factors offer fresh potential for the treatment of mesothelioma. Clinical trials have recently been initiated to evaluate the anti-tumour activity of the VEGF inhibitors SU5416, bevacizumab and thalidomide. ZD1839 (Iressa, AstraZeneca), an inhibitor of EGFR tyrosine kinase, is also being evaluated. Two clinical trials are planned to evaluate the two PDGF inhibitors Gleevec (Imatinib mesylate, STI-571, Novartis Pharmaceuticals) and PTK787 (Novartis Pharmaceuticals).

All the links to the above news

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos In Schools Made Headlines Today

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Social Media and Television has been buzzing with Asbestos in School as Lucie Stephens has fought so hard in her Mums name to have Asbestos out of schools.

http://www.bbc.co.uk/news/uk-38179741

The daughter of a teacher who died after being exposed to asbestos at school, is warning parents of the risk to their children.

Lucie Stephens’ mum Sue died of mesothelioma, a type of cancer caused by exposure to the deadly material, and now she is calling on the government to proactively remove it from all schools.

Ms Stephens wants parents to understand the risk of asbestos exposure their children face at school.

http://www.bbc.co.uk/news/uk-england-38167560

Asbestos claims hit £10m over English schools

These program’s will disappear but we are so pleased with the awareness they have raised and have everyone tweeting

http://www.bbc.co.uk/iplayer/episode/b083gjy8/south-east-today-lunchtime-news-02122016

Fielf Fisher have given a good Interveiw here Andrew Morgan is speaking here https://www.youtube.com/watch?v=fp0z6XUB9Ck&feature=youtu.be&list=PLLZ0EJTAmkfkDiwBLd8tuwPJMWBbVVVSh

Then at Dinner time it was stated that the Department of Education will remove Asbestos from Our schools by 2028 and have a yearly budget to make this happen.

Dr Jeremy Steel also gave a good interview in this to back up Asbestos should be out of Schools x

A very busy day and my phone and computer are running hot.

We did manage to get out with Louis and the park was muddy so hence we had it to ourselves

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A lovely view with the sheep busy eating they didn’t even notice us