Stand up for your rights, wherever you are ...

When I started this blog back in 2009, it was shared by family and friends mainly in the UK.  Over time, others have heard about it and now we have visitors from many parts of the world - UK, the Channel Islands, USA, Canada, Australia, Germany, Italy, France, Spain, Poland, Russia, Ukraine, South Korea, India...

The first part of today's post is especially for those of you in the USA

A short while ago, I was contacted by Susan Vento whose husband Bruce - a serving congressman for the state of Minnesota - died as a result of mesothelioma.  Susan is a spokesperson for the Asbestos Cancer Victims Rights Campaign (ACVRC).  

Recently in the states, asbestos companies have been using their political influence to introduce a new bill called "Furthering Asbestos Claim Transparency Act" or FACT for short.  You can read about the bill by clicking here. 

ACVRC is justifiably concerned that this act will delay and, in some cases, deny justice and badly needed compensation to people suffering from asbestos-related diseases.  It has launched a campaign to fight and defeat this unfair legislation.  You can help by doing two things:

1.  Sign the petition to stop legislation that threatens cancer victims.  Go to http://cancervictimsrights.org/take-action/sign-the-petition/ and follow the instructions to sign the petition at the bottom of the page.  Every signature matters!

2.  Spread the word by sharing today's post with others who are, or might be, affected by this issue.


This part of today's post is for those of you in the UK

If you are based in the UK, 2012 brought both good news and bad news in terms of the rights of mesothelioma patients and others with asbestos-related diseases to compensation where exposed to asbestos fibres as a result of negligence in the work place.  

The good news was that in a landmark case (known as the "Trigger" case) the Supreme Court ruled that companies who provided insurance at the time victims inhaled the deadly fibres which subsequently caused them to develop mesothelioma will have to pay compensation.  

Four insurance companies had argued that employers liability should be restricted to when cancerous tumours start to develop rather than when victims were exposed to the deadly dust. Given the long latency period for this cancer - usually decades - by the time many victims are diagnosed they have retired or the firms they worked for have long since ceased to operate.  Had the insurance companies case been upheld, such victims would have received no compensation despite their employer having paid insurance to protect their workers in good faith.  

The other good news was that the UK government announced a new scheme to pay compensation to mesothelioma sufferers who cannot trace their insurers. Although effective from 25 July 2012, the bad news is that it will take about two years for payments to be made and that 50% of victims with asbestos-related diseases will be excluded, including those with asbestosis or lung cancer caused by exposure to asbestos.

If you or someone you know in the UK suffers from mesothelioma or another asbestos-related disease, you can find out more about your rights on the Asbestos Victims Support Groups Forum UK by clicking here.

The third part of todays post is about what's happening in Italy

In a ground-breaking judgement back in February, the Italian Courts sentenced a company owner and its major shareholder to 16 years in prison for the deaths of thousands of Italians - both workers and residents - due asbestos poisoning from the Eternit factory in Casale Monferrato.

Not surprisingly, the guilty parties have appealed and the appeal trial is ongoing.  With three hearings every week, it is expected that the trial will end in June.  You can follow progress via the Asbestos in the Dock website by clicking here.  

If you had a slate roof replaced in the 70s or 80s, there's a good chance that the natural slate was replaced by asbestos cement slates manufactured by Eternit.  We have them on the roof of the rear wing at our house.  In my previous life at Oxford City Council, I picked up and handled samples of these artificial slates submitted for approval under planning conditions on an almost daily basis.  Small wonder therefore that the Eternit trial has a personal interest for me as well as being of wider public interest. 

Mesothelioma and asbestos worldwide

Earlier this year, the European Parliament Committee on Employment and Social Affairs adopted a motion on asbestos-related health threats and prospects for abolishing all existing asbestos.  This called upon the EU to

• develop, implement and support a model for asbestos screening and registration
• develop minimum asbestos-specific qualifications and training for professionals and businesses likely to come into contact with asbestos
• develop programmes for the removal and management of asbestos
• recognise asbestos-related diseases
• support asbestos victims groups
• develop a strategy for the global ban of asbestos

This is just a brief summary of the motion.  For full information, click here. 

If you are from another part of the world, you can find out more about the global asbestos industry and its affects on health in a useful article on the Asbestos.Com website by clicking here.  

You can also access the "International Ban Asbestos Secretariat" by clicking here.

The bottom line(s)

Having a husband diagnosed with an incurable cancer means I often find myself wearing blinkers, focusing on his life, our lives and the lives of meso warriors and carers we are in contact with on an almost daily basis in the virtual world.  

From time to time, it's good to lift the head above the parapet of day-to-day living and survival to see what's happening out there in the wider world.  Thank you Susan for drawing to my attention what's happening in the USA and reminding me that asbestos, mesothelioma and other asbestos-related diseases is a global issue.

Wherever you live, and however you or your loved one were exposed to the asbestos fibres that have caused you to develop this cancer, the bottom line is that its all about people caring for and supporting each other; sharing news; raising awareness and working together for a common cause. 

Today's post is my contribution to awareness-raising. 

Tomorrow we are back on to more personal things; we'll be celebrating our wedding anniversary - another milestone in the post-diagnosis journey :-)

With love to you all, especially those in pain, waiting anxiously for results and undergoing treatment x

Valencia - and a dedication to a very special lady

Today's blog - the last installment about our recent trip to Spain - is dedicated to Mavis, meso warrior extraordinaire, who heard yesterday that her "Mr Nasty" is growing again. Mavis was diagnosed with mesothelioma in 2009, around the same time as Steve.  Together with her husband and carer Ray, we have all been traveling the same journey, albeit at different speeds.  

I know that Mavis enjoys it when people are busy and would love to return to Spain one day, so today's post is dedicated to Mavis and Ray with the hope and expectation that you will both enjoy more happy holidays in Spain and getting out and about in the motor home again before too long.

For the second part of our visit to Spain, we journeyed to Valencia on the Mediterranean coast, traveling on the high speed train from Madrid.  When I say high speed, I'm not joking!  At times we were moving through the countryside at over 300 kph (around 187 mph) which is probably the fastest we have travelled on land without taking off.  

We arrived in Valencia late morning and soon found the stop for the bus to take us to the apartment which would be our base for the next few days.  Our host Laura was waiting at the bus stop to greet us and show us the way to our accommodation, a light, airy and spacious apartment in a modern block to the north of the Turia Gardens, the linear park created on a riverbed after the river itself had been diverted to alleviate flooding.

A (very) welcome pack of food had been provided, so we didn't have to worry about shopping first thing. After a quick unpack and lunch in our new home, we set off to the City of Arts and Sciences - an amazing complex of buildings designed by Valencian architect Santiago Calatrava. 

The complex includes a "Palace of the Arts"; the Hemispheric IMAX cinema; an interactive science museum; the Agora multi-functional space; a landscaped walkway called the "Umbracle" and the Oceanografico - the largest aquarium in Europe.  And it's stunning!  I won't try to describe it to you - just look at the pictures...

Palace of Arts

 

Hemispheric IMAX cinema

Science Museum

Walkway

We didn't go into any of the buildings that afternoon, just wandered around the outside of the arts centre, cinema and science museum and through the intervening public spaces, looking and taking photos...

It was all a bit much to assimilate in one go so, rather than return to the City of Arts and Sciences straight away, the next morning we walked into the historic core of Valencia, bought our tourist cards, had a look around the cathedral area and wandered back through another part of town to the Turia Gardens where we caught a metro/tram to the coast.

The old port of Valencia was transformed into a new marina when it was chosen to host the Americas Cup in 2007. Sadly many of the buildings constructed at the time for the America's Cup teams have yet to find a new use.  However, the Veles y Vents (Sails and Wind) building which housed the race trophy still stands as an eye catching centre piece.  

Veles y Vent home of the America's Cup race trphy

More recently, the port area was transformed into the Valencia Street Circuit which hosted the F1 European Grand Prix in June 2012.  We had fun following bits of the official track as it meandered in and out of the port buildings!

Luna Rossa F1 Team building

For lunch we headed off to the beach - miles of golden sand backed by bars and restaurants. We chose the Menu del Dia, thinking it would be a modest affair until the food started arriving - a tuna salad, followed by deep fried calamares and fish; mussels; garlic bread with crushed tomatoes, then a huge paella with seafood, chicken and rabbit, all washed down with a bottle of wine.  Too full for a "postre", we settled on coffee to finish.  

Toe dipping in the Med

After lunch, we managed to stagger down to the waters edge and took a symbolic dip in the Med - just toes as the water was far too cold for anything more - before heading back to the port and the bus back into town for another visit to the City of Arts and Sciences.  

This time, we had a quick look inside the public areas of the science museum, watched a photo shoot happening outside, walked round the exterior of the Agora and strolled along under the Umbracle, back to the bus stop home.  

The Umbracle

Science Museum, Agora and bridge

The Agora

After such a huge lunch, all we needed to eat that night was one (in my case) or two (Steve) small tapas in a bar in the historic centre before heading to bed.

We spent our last full day in Valencia at the Oceanografic, first taking in the buildings and small islands in a large lagoon connected by decked walkways, where you can see sea lions ducking and diving, then going inside a huge geodesic dome aviary, where you can wander freely among exotic wetlands species birds.  

The "Submarine" restaurant

Egret

After lunch we ventured into the underground aquaria, visiting the Arctic with the beluga whales; the penguins in the Antarctic; the Mediterranean which its huge range of fish and invertibrates; Temperate and Tropical waters and finally the Oceans, with the sharks and rays...

Jelly fish

Steve and shark

Before leaving, we visited the Dolphinarium for an exhibition demonstration.  Neither of us felt very comfortable about watching dolphins perform tricks, but decided to take a look knowing that we could leave at any time.  As well as the main exhibition pool, there are four other pools.  It was reassuring to see that the dolphins in these pools - who were not in the show - were happily leaping in and out of the water and "performing" while the music was playing, even though they were not being rewarded with fish.  

Almost as fascinating to watch was the behaviour of several large groups of Spanish school kids (and their teachers!) jumping up and down in unison to "Moves like Jagger" playing over the loudspeakers as we waited for the show to begin - the sheer energy and exuberance was a joy to behold :-)

We're convinced that some of the same kids were on the plane that took us back to the UK the next day.  It brought smiles to our faces to see them so excited that they broke into spontaneous whoops of joy when we took off and loud applause and cheers when we landed smoothy after a rather bumpy approach to a windy Gatwick airport.  Such zest for life is catching!   

I promised that we would pace ourselves on this holiday - after all, we'd had six months in hibernation over winter while Steve was having chemo.  But if you have the opportunity to enjoy life and have fun, restraint seems to fly out of the window until physical exertion eventually slows you down and you have to take a break.  Until then - move like Jagger, as they say!  

But don't forget to chill some times too, like this little chap, dreaming of ice cream - this image is especially for Louis, Mavis and Ray's dog :-)

Ice cream dreams

I am already thinking about our next trip, but in the meantime there is work to be done...

Toledo, Madrid and a very special meeting

Apologies if you have been waiting for the next installment of our visit to Spain.  I'm afraid that the 800+ emails in my In box and 700+ Best Shots photos waiting to be judged on our return are taking a long time to go through....

After our foray into Madrid's galleries and museums on our first full day in Spain, we headed out of town on day two, on the train to the World Heritage Site of Toledo where we spent the day wandering around the hilly historic core, stopping every so often to catch our breath, refuel and take photos.  

Toledo has a fascinating history, one of the few places where Christian, Muslim and Jewish cultures co-existed peacefully at a time when religious persecution was rife in Spain. The mix of cultures is woven in the built fabric of the city.  We didn't have the time or energy to go inside many of the museums, but we did venture into the cathedral to admire the architecture.  

Most of the time, we wandered happily through the maze of streets, stopping occasionally to admire views down to the Tagus river which winds round the base of the citadel and out into the countryside beyond (and to doze off on a park bench in the warm sunshine, if truth be told :-) until it was time to catch the last train back to Madrid.

The next day back in Madrid was a complete contrast: time to photograph some modern architecture, starting with a visit to Terminal 4 at Madrid Barajas airport, designed by Antonio Lamela and Richard Rogers.  We were told later that it doesn't work as well as the older terminals from the passengers point of view, but it's a wonderful place to take photographs!

From the airport we took a suburban train to one of Madrid's new business areas to see the Cuatro Torres (Four Towers) which dominate the city's skyline and the Puerto de Europa, nearby where a pair of towers lean towards each other across the road. 

Our last port of call before heading back to the apartment was the Hotel Avenida de America, its facade clad in a spectrum of colours.  

We seriously under estimated how long it would take us to get back to base, so were somewhat late for a rather special meeting that evening. 

If you have been reading the blog for a while, you will know that last year we met up with a fellow photographer, Guiseppe, through our mutual involvement in Fotoblur. It was such a lovely experience, that I suggested to Steve that we try something similar whilst in Spain.

I have long been an admirer of photography by Marisol, who lives in Madrid. When our plans to visit the city were finalised, I contacted her to see whether she would like to meet up for a drink and tapas.  We were delighted when she said yes.  And so it was that on our fourth night in Madrid, we headed to the Plaza del la Opera and were immediately recognised and greeted warmly by Marisol and her husband Manolo. 

It was a lovely warm evening; it felt like everyone was out enjoying the sunshine and in a good mood, as indeed were we.  After a short stroll to the plaza in front of the Royal Palace, we stopped for something to eat and drink nearby and, guided by Marisol, enjoyed some excellent tapas and wine that we might have been too nervous to try had we been on our own.  The evening passed quickly, as we found we had much in common to talk about.  Indeed, it felt like we were meeting with old friends, even though this was our first face to face encounter.  Thank you so much Marisol and Manolo for making it very special!  We hope very much that we will have the pleasure of meeting you again, either in Madrid or the UK.  


We spent our last day in Madrid in more relaxed way, visiting some of the city's green spaces.  A picnic at the Botanic Gardens, followed by an afternoon in the Retiro Park where we watched others engaged in more active pursuits - rowing on the lake, jogging, skateboarding, inline roller blading and doing stunts on bikes. 

Whilst there, we visited the Crystal Place a building inspired by the one in London, and an exhibition in the air conditioned Palazzo de Velazquez, which made us realise just how warm it was outside!

As evening approached, our last port of call was to the Parque del Oeste, where we admired the views over the west side of Madrid and strolled round the ancient Egyptian Temple of Debod.  This building was donated to Spain as a thank you for helping to save the temples of Abul Simbel which would otherwise have been lost when the Aswan Dam was constructed.  It was reconstructed in Madrid and opened to the public in 1972.  When we were there, it provided a great backdrop to a hip-hop dance troupe! 

And that's how our last full day in Madrid finished, watching a dance crew strut their stuff in front of an ancient Egyptian temple gate as the sun sank slowly in the west....

....If you are curious about what happened next, come back soon after I've caught up with a few more e-mails and judged a few more photos :-)

    

Hola!

We've just returned from nine wonderful days in Spain visiting Madrid, Toledo and Valencia.  We've enjoyed sunshine, warm temperatures, excellent tapas, amazing buildings both historic and modern, and some very good company along the way.  

Our travels started last week, taking a bus from Oxford to Gatwick, a plane to Madrid and a taxi to the Latina area, right in the heart of the city where we were met by host Miguel whose flat we rented during our stay.  

Fortified by a welcome bottle of wine and a good night's sleep, our first full day was spent mainly in the city's galleries in the "Art Triangle".  However, we started by visiting the old Atocha railway station with its enormous glazed roof. No longer used as a station, the old building now houses a botanic garden complete with terrapin pool, lots of bars and cafes, shops and exhibition space.

Next door in the new station, there is a simple but striking memorial to the 191 people who lost their lives and the 1,800 who were injured in the 2004 Madrid train bomb explosions.  Everyone's name is listed, along with words from the survivors.  A very poignant tribute.

A short distance away and we were in the Reina Sofia Museum which houses some of Spain's best contemporary and modern art, including "Guernica" by Picasso.  Much larger than I had imagined, it's a powerful protest against the Spanish Civil War.  We had lunch at the Museum then explored the amazing roof terraces of the new extension with reflections of the city below, before moving on to another modern art gallery.

The Caixa Forum is a converted and extended power station which seems to float above ground level, resting on a just small number of points.  

Inside, it has a stainless steel staircase which is well known to photographers and therefore irresistible!  

Before leaving the "Art Triangle" we had a quick look at another museum, the Thyssen-Bornemisza, which has an eye-catching modern extension.

Our last port of call for the day was the ABC Museum, in another part of Madrid.  It was too late and we were too tired to go in and look at the drawings and illustrations, but the outside was fun to photograph!  

One of the benefits of staying in the centre was a good choice of bars within stumbling distance, which was about all we could manage at the end of our first full day in Madrid!

If you are curious about what we did the next day, please come back tomorrow!

Some missions accomplished and others making progress....

This time last week, I was worried about Steve's prolonged chest infection with bouts of coughing by day and by night, which kept both of us awake. Although he's still clearing his chest occasionally, the horrible hacking cough has gone and we are now getting a good night's sleep.  As a result, we decided to take the plunge and commit to some time away from home in the near future.  

In a flurry of activity, over the last few days we've planned the itinerary; researched transport options; bought bus, plane and rail tickets, maps and guidebooks; found some lovely-looking places to stay and liaised with our hosts. It's still too early to pack, but in all other respects we are now ready for our next mini-adventure!  I'm not going to tell you what, where or when - you'll have to wait and see :-)

We've also made progress on other things and tied up one or two loose ends:

A hot air balloon flight originally scheduled for August 2011 and subsequently rebooked and cancelled on numerous occasions due to adverse weather conditions has now been rescheduled for early May.  We're not holding our breath given past experience, but you never know...we might just take to the skies next time :-)

The last of the online auctions to sell furniture and other items that Steve's mum no longer needs now she's in a care home finished last Monday, so it's been a busy time packing and posting some things and waiting for others to be collected by the winning bidders.  The last item was taken away by its new owner on Saturday afternoon.  Mission accomplished!  Just have to do the maths now and transfer the net proceeds into the care fund pot.  

Before the end of the financial year on 5 April we had to do some number crunching for Wride & Company.  Although we had cleared the work diary of all commitments for five months or so while Steve was having chemo, it's still been a long and tedious task crossing checking banks and credit card statements with invoices and receipts. But it's done now, ready for the accountant to check.  Another mission accomplished!

Prompted by son Jack, I went on a mission into our (very dilapidated) garden shed and rescued my old Brompton folding bike which has been stored there for years.  Have brushed and wiped away the plant and animal life that had made the bike home in the last decade, I think it can be salvaged.  Assuming we can make it safe and roadworthy, Jack plans to ride it in the Brompton World Championship Race in July to raise money for Mesothelioma UK.  More of that in a future post...

In between all this, I've spend an hour or so most days judging for the Best Shots Photography Competition which finishes at the end of this month.  Our own photography was put on hold while Steve was having chemo and has been very slow to resume - so far, just a flying visit to the Second Severn Crossing when we were in Bristol on family matters and a day out in London. However, one of the London photos has just been published in Stark Magazine Issue 12 

and we have both had work accepted by a local gallery, The Jam Factory (where Frank Coopers Oxford Marmalade used to be made) for a group exhibition during Oxfordshire Artweeks in May.

Our forthcoming trip looks like it will offer lots of photo opportunities as well as the chance to meet up face-to-face with a fellow photographer we have only known in the virtual world so far.  If our experience of meeting Giuseppe in Rome is anything to go by, this next meeting will be something to look forward to...In the meantime, I must go back to looking at other people's Best Shots!  

Will be thinking of all the meso-warriors while we are away and hoping that everybody will be able to enjoy spring now that it's finally arrived. Here's hoping that the sniffles we have both been having over the last 24 hour hours will clear up and go away as quickly as they have come....

Global Asbestos Awareness Week 1 - 7 April: 7 facts for 7 days

As part of its Global Asbestos Awareness Week campaign, the ADAO (link on the right under "Find Out More...") has published a series of facts about asbestos, one per day for the whole week, as well daily articles by experts in the field and people with diseases caused by exposure to asbestos.  

Below is the complete set of facts.  You can read the articles by clicking HERE 

Fact 1:  Asbestos is a known carginogen i.e it causes cancer. There is NO safe level of asbestos exposure.

Fact 2: 55 countries have banned asbestos including the UK, but the US and Canada have not.  In 2012 alone, the US imported over 1,000 tons of asbestos.

Fact 3:  Asbestos fibres can cause asbestos, lung and gastrointestinal cancers, and an aggressive cancer called mesothelioma.  The average life expectancy of a mesothelioma patient is 6-12 months.

Fact 4:  Asbestos-caused diseases have a 10-50 year latency period from initial exposure to development of disease.

Fact 5:  The World Health Organisation estimates that 107,000 workers die annually from exposure to asbestos.

Fact 6:  Chrysotile asbestos accounts for nearly 95% of all asbestos mined and exported today.  In 2012, the top four asbestos producing countries were Russia, China, Brazil and Kazakhstan.

Fact 7:  Asbestos fibres can be nearly 700 times smaller than human hair and are odourless, tasteless indestructible fibres that can remain in the air for seconds


Thank you Linda Reinstein and the ADAO for your stirling and effective efforts to raise awareness about the risks of asbestos exposure and to secure a worldwide ban on this lethal material. Although this is the last day of Asbestos Awareness Week 2013, by spreading the word you have helped save countless lives in the future and spared many families and friends the agony of watching helplessly as a loved one fights the diseases caused by exposure to asbestos.

EAST(er) WEST and REST

It's been a mixed bag of a week, which has seen us on the road again traveling from one side of the country to another on various missions as well as being grounded at home, fighting infections....

...After some gentle persuasion (aka a lot of nagging) Steve finally agreed to try some antibiotic eye drops to tackle the conjunctivitis which plagued him at the start of last week. Thankfully, the drops worked quickly, and he was fine to drive to Heathrow airport in the early hours of Wednesday morning where we picked up son Jack on his return from a holiday in New Zealand.  

Although we all needed a nap later that day (Jack adjusting to jet lag and us to compensate for the very early start), it was lovely to enjoy a meal out together that evening and hear about the New Zealand adventures.

Although the antibiotic drops sorted out Steve's eye infection, the cough lingered on. In spite of that, we travelled west to Bristol on Thursday to take Jack back to his house, pick up the last item of furniture from Steve's mum's old house to sell on eBay and say what will probably be our last farewell, now that the house sale approaches completion. 

By the time we returned to Oxford later that day, we were both feeling shattered.  Steve's cough returned. I couldn't stop sneezing. Neither of us had the energy to do anything much and that's how things stayed for the next couple of days - grounded at home, sleeping or resting most of the time as we have tried to recover from this nasty bug is that has laid us both low.

However, we were up and on the road again on Sunday morning, this time traveling east for Easter to spend the day with daughter Katie and her partner Ed and deliver a few things for the new flat in London, which is now taking shape very nicely.  

No hard work for us this time, just lunch out (they are lucky to live in an area with a good choice of eateries in easy walking distance) followed by a stroll around Finsbury Park (a wonderful asset, so close to the flat) and back in time to watch the Boat Race on TV.  Well done Oxford!  

The visit rounded off lingering over a delicious home-cooked meal before we headed west, back to Oxford tired but happy.  

Although I'm still sneezing occasionally, my cold seems to be well on the way out.  However, it's been over a week now since Steve's cough started and it hasn't really improved much.  Although he hasn't been too bad by day, at least once, often twice a night, Steve has woken up and felt the need to clear his chest and the same again around 6.30 am, so we haven't had a good night's sleep for over a week. In these circumstances, perhaps it's not surprising that we have both felt tired during the day.  

It's a productive cough to use the medical term - yellow muck to you and me!  Clearly an infection of some sort.  All the loud coughing makes me slightly nervous that the pleural lining around his lungs which were stuck back together again by the pleurodesis operation (aka the "talc" op) after the fluid was drained back in 2009, will spring apart with the effort.  

Time to turn on the powers of persuasion (ie start nagging again) and insist that he gets an appointment to see the GP when the surgery reopens tomorrow after the extended Easter break.  

In the meantime, other plans are on hold.  I'm reluctant to make travel and other arrangements until I know that Steve is on the mend. Even insurance companies who specialize in those with pre-existing medical conditions won't insure people who have had chemotherapy so recently without charging more than the cost of the holiday itself.  We will just have to wait until we feel confident enough to book and take off at the last minute.    

Wherever you are, whatever you are doing, enjoy what is left of the Easter holiday even if, like us, you are simply taking it easy....