torch, tickets, travel, togetherness...

I wasn't born the last time the Olympic Games came to London. When it was announced in July 2005 that the Games would return in 2012, it seemed like the opportunity of a lifetime to be part of one of those events where the world comes together in "mutual understanding, with a spirit of friendship, solidarity and fair play" (to quote the Olympic Charter). Keen to get experience, I volunteered to marshal the London stage of the Tour de France in 2007 and registered as a "Games Maker" for the next London Olympics. That dream came to an end when Steve was diagnosed with mesothelioma in the summer of 2009.  I couldn't see three months ahead, let alone three years into the future.  


Now the London 2012 Olympics are less than a fortnight away and, three years on, Steve is still here very much alive and well. Although sceptical of all the hype that goes hand in hand with such an event, Steve's interest was captured when the Olympic Torch relay passed through an area where he had lived as a child.  Since then we have dipped into the TV coverage from time to time, especially when the Torch Relay visits places we have connections with.  


Last Monday, it was Oxford's turn.  Although we had missed out in tickets for the main local event - a party in South Park - I couldn't resist the opportunity to see it happen live on the streets.  I've yet to discover how watch, clap and take a photo at the same time, so the pictures are not brilliant. However, the atmosphere was great - a huge number of people, but everyone in a good mood!  I'm so glad I went. 

Flag seller

Sol Samba getting everyone in the party mood

The next torch bearer waits her turn!

The Torch Relay bus 

The Torch bearer 

Torch bearers who have done their bit follow on

Crowds return home after the Torch Relay has passed on

Steve was watching the event from the comfort of home. When we looked carefully on the i-player afterwards, we managed to spot a small familiar looking blob, standing on the Victoria Fountain on the Plain in St Clements, waving a camera around in the background! 


Like many others, our attempts to buy tickets for the sporting events didn't bear fruit.  However, the tickets to visit the Olympic Park and go up Orbit have now arrived and, all being well, that's where we'll be in two weeks time, along with goodness knows how many people.  If the atmosphere is anything like the Torch Relay, it will be worth it in spite of the inevitable crowds, queues and travel congestion.  Another milestone in our lives together, post-diagnosis!


Other travel plans have come together in the last week - a work trip to Guernsey for me; a family holiday in Carcassonne in September, before Steve's next scan and assessment; a day at "Glorious Goodwood" races and stopover with friends in Chichester in early August; a house party here later in August, when we will come together with friends to form "Team Finch" in support of Rob who is taking part in the Brompton (folding bike) World Championships at Blenheim Palace.  We have also worked out the logistics of getting to and from Wales in mid-August,  for a three day walk from the Brecon Beacons to Cardiff Bay. Just waiting for a break in the weather long enough to fit in a hot air balloon trip, following cancellations last August, September and again this June....a reminder of how horrible the weather has been.....


A meal with our dear friends Jon and Sally got last weekend off to a lovely start.  This weekend, we hope to come together with other locals for the West Oxford 1st Olympiad Absurd Olympics Fun Day. Amazingly, the rain has stopped and I can hear the sound of singing wafting over from the park...time to come together again and enjoy the Olympic spirit!

Workers Memorial Day - spread the word and raise awareness

Today is Workers Memorial Day - a time to remember and pay tribute to all those who lost their lives as a result of negligence in the workplace. For every life that has been lost, the ripples of that loss spread out through families and friends, over time and through space, all over the world.  


In our family, Steve's father died from mesothelioma after being exposed to asbestos whilst working in the shipyards of Bristol. The loss of one man deprived the surviving family of a husband, a brother, a father and a grandfather.  


27 years ago today Linda and Alan Reinstein started their married life together in America, only to have it stolen by mesothelioma in 2006 when Alan died after a battle lasting almost three years.  

Alan was a former president of the Asbestos Disease Awareness Organization (ADAO). Today the ADAO continues to act as a voice for the victims of all asbestos-related diseases.  The ADAO's latest event is "See for Yourself" Photographic Education Campaign.  You can see it here:

Our small contribution to raising awareness of the risks associated with asbestos is this blog in which we share our experience of living with mesothelioma since June 2009 when Steve was diagnosed with this incurable cancer.  I hope that what we have written will have already brought hope to some who find themselves faced with this diagnosis, and will continue to do so for years to come.  


I also hope that reading the blog has raised your awareness of the risks posed by the presence of asbestos in our homes, schools and places of work.  If as a result, just one person who might otherwise have breathed in these deadly fibres takes the precautions necessary to protect their health, then it will be worthwhile. 


Please spread the word to others who might be at risk to raise awareness of the dangers of asbestos, and to those who might take some comfort from our experience to date. Thank you.  

the long wait....

After yesterday's afternoon sunshine, today dawned grey and misty. Steve was wide awake by 6.30 am, up and sorting out some money matters before my eyes were properly open. Even so, we left the house later than planned and crawled most of the way to the hospital in the morning traffic jams. Not the best start to Steve's assessment day.  


However, there were spaces in the hospital car park; the X-ray was taken quickly; we arrived at the day clinic well before for his 9:40 appointment and were called in to see the doctor bang on time.  Our spirits lifted a little as we were told we would be seeing Dr Church the registrar, rather than the consultant.  If it was bad news, surely Dr Talbot would be the one to break it to us himself....


However, as time passed we became increasingly anxious, sitting alone in the consultation room - five minutes, no doctor....ten minutes no doctor...fifteen minutes later, still no doctor....oh dear, I thought, the registrar has spotted something ominous on the X-ray and is waiting for advice from the consultant about how to break it to us and what to do next.... 


And then.  At last.  Dr Church appeared smiling, accompanied by a student doctor, and asked whether Steve minded her observing.  My mind flew back to the first appointment I had attended with Steve post-diagnosis in 2009, where the consultant was being shadowed by a teenager on work experience and how I had fought hard to hold back the tears as we broached the subject of prognosis.


But today the atmosphere was different, thank goodness. After first asking Steve how he felt, the doctor didn't keep us waiting on tenterhooks any longer.  There was no sign of any change on the X-ray, the mesothelioma still appeared to be stable.  The physical examination by both doctor and student revealed nothing untoward and as Steve still feels good, he's be signed off for another three months!  No need to go back to hospital until 14 June, unless he experiences any problems in the mean time.  


So here we are, with big smiles on our faces, thinking about what we would like to do in the next three months which will include another big milestone - our Ruby wedding anniversary on 1 May.  


Tomorrow it will be exactly two years and nine months since Steve was diagnosed with mesothelioma and he's still going strong.  Woohoo!

Picture this.....

This week we have been mainly "doing" pictures - cataloguing, printing, collecting, sending off and viewing our own and other people's images.


Steve has been collating and printing out the thumbnails which we use to catalogue our photographs.  Between us, we have taken over 2000 shots since the end of April, including trips to Venice, Bilbao, London, Edinburgh and Manchester.  Thank goodness for digital cameras - it would have cost a small fortune, had we been buying film.


The horti-CULTURE exhibition at the O3 Gallery finished last Sunday, so we went back on Monday to collect prints minus four which had been sold, including The Allotment Watering Can which was bought by the gallery to add to its permanent collection!  

Tuesday morning I posted a print to the Association of Photographers (AOP) which will go on show in October at the AOP Open Awards 2011 exhibition and be included in the book of the exhibition.  Tuesday afternoon and evening was spent in London, enjoying other people's art at Tate Modern. 


On Wednesday I was taken back in time by an e-mail from the chap who runs the Urban Photographer of the Year Competition, to say that they were producing a coffee table book of all the finalists from 2008, 2009 and 2010. He wanted a high res version of an image which had been selected for the 2008 competition and more information about it to put in the book.  The picture in question had been taken in October 2007 on a trip to Glasgow, so I had to dig deep into the archives to find it - highlighting the importance of good cataloging (and how much my photography has improved since then!)

On Thursday, Steve responded to a call for entries from the local hospital to submit applications for an Art on the Wards project.  We already have pictures on semi-permanent loan at the Nuffield Orthopaedic Centre, but it would be good to have more at the NOC! 


Friday, we worked on prints for a photographic portrait competition organised by the National Portrait Gallery.  We rarely photograph people, but I thought I would give it a go this year just for the experience.  We were back enjoying other people's art which had selected for 5th Annual Exhibition at the 03 Gallery in the evening.


So here we are on Saturday.  I have finally got round to sending off my Art on the Wards application.  We have enjoyed looking at the catalogue for the RPS 2011 International Print Exhibition which arrived this morning and have started thinking about our entries for this year's International Projected Image Exhibition.  Steve remarked that we will have to up our game this year if we are to stand a chance of being selected, and I think he's right. But we will try anyway!


There will be more looking at pictures next week, but before then it's a big birthday weekend - many happy returns Mary, Jon and Stella who all have birthdays on Sunday.  Have a great day!


A good productive week for us has been saddened by the news that another meso warrior in Australia has lost his battle with this awful disease. For a while, things looked very promising.  Back in November last year, Farid had encouraging results as a result of taking part in a clinical trial called FAK which until then had only been used to treat other types of cancers.  Sadly the initial tumour reduction was not sustained.  Still, it bought him and his family more time together which they might not have had otherwise.  


We have also had news from my cousin that in spite of chemotherapy, her husband's cancer has continued to grow and prognosis is poor. Faced with that news, they have decided that they are going to enjoy and proceed with all the things they planned for the next couple of months.  We look forward to seeing you both in September and will be thinking of you.


Our thoughts are also with Mavis, who was diagnosed with mesothelioma around the same time as Steve.  Her latest scan showed tumour growth and, not surprisingly, she is feeling low - but still determined to fight back.  If you have ever dipped into her blog (link top right under We are not alone) you will know that her "Mr Nasty" as she calls it, will be in for a tough time. We are rooting for you Mavis. Pack him a punch from us!


Another meso friend, Jan, is also having to face the fact that her mesothelioma "friend" isn't willing to give up the fight in her left lung and has made a claim on her right lung. Whatever you decide to do Jan, stay strong and positive. The decision you make will be right one for you.

away with the cobwebs

For the first six months or so after Steve's mesothelioma diagnosis, we seemed to spend much of our time going backwards and forwards to hospital.  Rarely a week went by between May and December 2009 without at least one trip up to the Churchill. Housework and gardening came somewhere near the bottom of the list of priorities, with only the essential jobs being done on a regular basis. 


As Steve began to recover from the after-effects of chemotherapy during 2010, the emphasis was on enjoying life and getting together with family and friends.  Once again, maintaining the house and garden did not figure high on the "to do" list, bar the occasional blitz when visitors were expected. As Steve's regular assessments came and went with no sign of any deterioration in his health, the top priority was to make the most of life; the impact of neglecting our home was becoming increasingly noticeable.  


So here we are in 2011, still enjoying life to the full! However, this year we needed to set aside just a little bit of time to give the house and garden some tender loving care. And it's this week.  And we've made a start.  


The front hedge is clipped.  In between showers, we've started to clear the overgrown jungle that had overtaken the back garden, cutting back and reducing the height of next door's hedge to let a bit more daylight and sunlight on to our side of the boundary and taking out a few plants that didn't make it through the winter. Work has ground to a halt on that front until we have time to take the green waste to the recycling centre - there's far too much to wait for the fortnightly doorstep collection.  And we'll need to get someone in with the right equipment to tackle the climbing hydrangea which has grown up above eaves height and is now scrambling along the roof, and taking next door's ivy with it.


Then it was the turn of the house. Going round inside with my mum's old cobweb brush has got rid of the cobwebs, made some spiders homeless, and disturbed the dust that's settled on the tops of doors, picture rails and frames, light fittings and cupboard tops.  So now it's time to vacuum from top to bottom and into all the nooks and crannies. There's lots more to do on the list - cleaning windows, curtains and blinds; washing down surfaces; going through the bookshelves, wardrobes and drawers to clear out, de-clutter and create more space; sorting out old paperwork to be shredded if necessary before recycling - that alone could take a week!  


Having started, it's clear that there's far to much to tackle in the few days earmarked for the 2011 spring clean, but at least we've got going. As well as starting the spring clean, we've printed, mounted and frames the eight pictures which were selected for the Coast exhibition, ready to deliver to the gallery tomorrow.  Steve is in the process of updating the Oxford Studio website to show our successful Royal Photographic Society Associate panels from last week. We've sorted out a reward for ourselves for making some progress on the spring clean and have started making plans for the rest of the summer, up to Steve's next assessment in mid-September.  Lots to look forward to - but for now, it's back to the spring cleaning......

another tick in the box

Although it was hard work last Thursday, hanging the exhibition in the Gallery at Chipping Norton Theatre went smoothly and we were pleased with the end result. We were joined on Saturday by Sarah, who helped us to prepare and calmed the nerves on Sunday as we waited for guests to arrive at the private view.  I'm relieved and delighted to say that the show was well received by everyone who made it to the launch.  Thank you all for making the effort to come, whether it was just a short walk from home, a longer drive from further afield or a train journey followed by an energetic cycle ride over the Cotswolds.  Thanks also for all the wonderful comments in the visitors book - I hope there will be many more over the next three weeks while the exhibition is running!


That's one of the big events of March ticked off successfully. There are more to follow this week.  I'm off to Bristol on Wednesday and London on Friday for two last work-related meetings before my final day of service at the end of the month.  However, the BIG event of the week is Steve's next assessment on Thursday when we will find out what's been happening inside over the last three months. 


If you want to know whether Leo is still sleeping peacefully or getting up to mischief, you will need to check back later this week.  As anyone with mesothelioma will tell you, the build up to an assessment and the wait to hear the results of scans is a nerve wracking time. Trying to stay positive....

temptations, twinges and a baby step forward

Last Saturday was supposed to be a mixture of culture and socializing.  However, we succumbed to the temptation of lingering over a long lunch at the Ashmolean Museum with Anne, Colin and Ruth and didn't leave ourselves enough time to do the culture bit before leaving to prepare the evening meal for everyone at our house.  No matter. It was a good excuse to pay a return visit this weekend with our son Jack, back in Oxford for a flying visit to various galleries, and to return to the Ashmolean for tea this time!


In between the two Saturdays, Steve has noticed some twinges on his right side in the area around the "ports" where the chest drain and camera were inserted for the pleural effusion operation, back in June 2009. Perhaps twinges is too strong a word. It's more a matter of being aware of his chest, whereas in the normal course of events it's not something he gives much thought to. One of the problems with mesothelioma is that you think that every twinge, however small, may be the start of a flare up; that thought alone can magnify the significance of the feeling and enlarge it out of all proportion.  


However, as the week has worn on, the chest awareness has worn off.  So may be the twinge was a bit of RSI brought on by all the work he's been doing on the computer, updating the Oxford Studio website.  Please don't bother looking now!  The update is still a work in progress designed to move away from the emphasis on botanical photography and reflect a wider range of work due to be exhibited in March and featured in a photographic magazine due to be published around the same time.  More of that exciting news in a future post!  


Not long ago, I mentioned how our "planning" horizons have shrunk - we tend not to make commitments beyond the date of Steve's next assessment, just in case....However, we have been tempted to look a bit further ahead recently, making arrangements for social get-togethers in late March/early April, a few weeks after Steve's next hospital assessment.  And we have both applied for Associate level RPS distinctions, with a photographic assessment in mid-June.  It feels just a little bit like we are tempting fate, but to do otherwise would be so limiting.


The baby step referred to in the title of today's blog isn't a new member of the Wride clan!  It relates to Steve's damages claim. The case management conference took place in court on Friday. Steve's presence was not required, so we had to wait to find out what happened. A short e-mail from Steve's solicitor advises that the presiding judge has reserved the case to deal with himself. That sounds promising, even though we don't know the significance.... The judge has also allowed "inspection".  I assume that means he has agreed our team's request to test further samples from the building where we think Steve was exposed to asbestos.  However, it might be a legal term with a completely different meaning!  All will become clear, I hope, when we receive a full note of "the directions" from our barrister, which the solicitor will pass on when available.  


Last but not least, if you yourself have children, are a teacher or a member of support staff in a UK school (or know someone who is), you might like to check out the Asbestos in Schools website (link on the right).  The site is a mine of useful information, research, reports and intelligent commentary on Government policy relating to the management of asbestos in UK schools. Such information is a powerful tool, which I truly hope you will never need to use.

19 months on........

A few days ago Steve had a call from Charlie, one of the nurses who looked after him when he was on the Velcade drug trial.  She's now one of the team of specialist Macmillan nurses who keep in contact with him between hospital assessments to see how he's doing.


When Charlie asked how things were, Steve replied that all is OK. He's not breathless or in pain and is, for all intents and purposes, leading a normal life. Had it not been for the diagnosis of mesothelioma in June 2009, he wouldn't be physically aware of what's been happening inside his body since he was exposed to asbestos many years ago. And that's how things stand today, 19 months since diagnosis.  


Following the stories of others in his position, we are both acknowledge how very fortunate he is to be alive and enjoying life, not in pain or physically compromised to the degree that it affects day-to-day activities.  However, the physical side of things is only part of the story....


Had it not been for the mesothelioma diagnosis, at this time of the year we would normally be planning our summer holiday and thinking about how to celebrate Steve's birthday in March and our wedding anniversary and Katie's birthday in May. We'd be developing the Oxford Studio business, perhaps working on designs for another stand at Chelsea Flower Show, running photography courses, or looking at ways to exploit Steve's graphic design skills.  As the tenth year of working in my current job approaches, I'd be thinking about how my career might develop over the next few years.  We would probably be looking further into the future, beyond retirement, now we are both in our glorious 60s......


A diagnosis of mesothelioma robs you of that long term vision and shared hopes for the distant future.  For us, horizons tend shrink to three-monthly assessment periods. Any plans beyond the next scheduled visit to the hospital are always subject to the proviso "assuming Steve is still OK...." Every cough, every ache, every sign of fatigue is a reality check - is Leo stirring?  In the weeks approaching the next assessment, stress and anxiety levels tend to rise and I find myself thinking, "what if....."  


However, Steve's mesothelioma diagnosis has made us appreciate all the more so the things that mean a lot to us, and how important it is to make the most of this time. So we continue to do so - in between getting on with the less interesting, but nevertheless necessary, things that are essential to keep life ticking over! 


There's a busy week ahead with work-related trips to London and Bristol, enlivened by the possibility of some social gatherings on one or two evenings and a definite plans for a get together with friends next weekend.  In the meantime, the ironing basket is overflowing, but at least my tax return has been done....Now if Steve can just get his accounts to balance, we'll be two happy bunnies :-))

The 200th

This is the 200th post, so it's me, Steve, dropping in to say hello.

I'm still here, not that I thought I wouldn't be, still feeling absolutely fine, which will be a surprise for the surgeon who gave me the diagnosis, but less of one for my oncologist, a much more positive sort of guy. Who knows why? Perhaps the chemo, perhaps my crazy immune system, but for now, I still feel as good as ever, notwithstanding the slightly numb fingers and slightly more numb toes.

As you will be aware, I'm terrible at keeping in touch, but it was good to see so many friends at the significant birthday party this summer. It was also good to meet so many people: sufferers, carers, charity workers and health professionals at the Mesothelioma Day. I might not contact you as much as I should, but I think of you all a lot. Thanks for being there, and love to you all.

Finally, today would have been Dad's 86th birthday. He died from mesothelioma in 1992: I hope you will all raise a glass of your favourite tipple in his memory.

Bye, and see you for the 300th post!

Jabs

Because he was undergoing chemotherapy this time last year, Steve was unable to have seasonal/swine flu jabs in the autumn.  As a result, and given his compromised immune system, we had to spend several months being ultra careful to avoid contact with people known to have infections.


It's all different this year, thank goodness. As mesothelioma is a health condition associated with a higher risk of medical complications from influenza, Steve comes into one of the priority groups for the seasonal flu jab. As his carer (well, more of a minder at present!) I fall into the same group. So that's where we've been this morning. Having jabs. More of a scratch, actually.  All highly efficient.  In and out very quickly.  So unlike our experience on this date last year, when it took three nurses several attempts to find a vein in Steve's arm for chemo, and we spent the best part of the day at the hospital......


Although duly jabbed, we won't go courting danger if there's a flu epidemic.  However, at least we feel we've done something to reduce the risk of getting a nasty infection that might harm Steve's lung function.  


Whilst at the surgery, I remembered to ask for my NHS number - my old health card has letters and numbers, which have long since replaced by all number IDs.  Armed with this information, I've been able to apply for a European Health Passport, which should be with us in time for our next trip abroad - something else to look forward to!


If my maths are correct, the next blog will be the 200th! Steve's turn to make a guest appearance on doing something positive, if I can persuade him......

We are not alone......

At the top right of the blog, under the title We are not alone, there is a list of links to other meso people's blogs. Today, I added another link to Anita's blog. Anita lives in Melbourne, Australia. Now in her late forties, she was diagnosed with mesothelioma in 2007. Her case against James Hardie was settled out of court, on the day it was due to be tried. Anita started her blog back then to let family and friends keep up-to-date with her progress - and its been one amazing journey....Following surgery, she went into remission, fell pregnant and now has a beautiful baby daughter, Emma.


Today Anita received biopsy results which confirmed her suspicions - the mesothelioma has returned.  However, although she has several tumours, they are all small and confined to her right chest area. Even so, she is looking on the bright side, enjoying the spring sunshine down under and the warmth of the sun on her skin.  After reading her blog today, I was so impressed by her positive attitude and determination to fight the disease that I have copied a paragraph below to share with you. Quite an inspiration!  

.....There are new clinical trials for Mesothelioma starting up all the time and sooner or later a cure will be found. All I have to do is to hang in there. Simple really.

For anyone in this predicament it is important to keep things in perspective and stay focussed on the positive. Medical science is moving exponentially toward cures for all cancers. The future really is looking bright we just have to stay focussed, do our best to keep our immune systems strong and try to remain positive. As I've said before, while there is life there is hope.

reunion, celebration, exhibition

In recent times, I've enjoyed a girl's weekend get together around this time of year; Prue, Chris, Jenny and I go somewhere like Bath, Glasgow or St Ives for a bit of culture, exploring, lots of talking, eating and drinking and the occasional bout of retail therapy.  


However, this time last year Steve was in his 5th cycle of chemotherapy, so leaving him for a weekend wasn't an option as far as I was concerned.  Rather than abandon our get together, my wonderful friends came here to Oxford, bunked up (literally!) in the YHA down the road from us and made Steve an honourable girl for the weekend, so that he could join us for meals and walks, between naps and taking the anti-nausea tablets.


We've had to modify our plans again this year, for health reasons - this time it's Jenny's husband who's being treated. As a result, this year's get together has been postponed until the spring, when it looks like we will be heading north to Edinburgh, within striking distance of Jenny's home. However, three of us did meet up in Oxford again last week, at the Historic Towns Forum Annual Dinner - which was also a celebration to mark Chris's retirement as the HTF's Director.


Steve was delighted to have the opportunity to take part in this momentous occasion, and honoured to find himself sitting next to Chris at the "top" table, as were Prue and I. We raised a glass to absent friends, and your were foremost in our thoughts Jenny. Hardly a dry eye in the house by the end of the evening, but tears of laughter and joy as Chris unwrapped her surprise thank you presents!  


After seeing Prue off to the station the next morning, Steve helped me print the last of my pictures for the Art in Woodstock exhibition, ready for hanging on Friday and the opening of the event on Saturday. If you are anywhere near here this week, I hope you can find time to drop into The Place Cafe Bar, 59 Oxford Street, Woodstock.  Make your way through to the back and enjoy looking at the pictures over a cup of tea or coffee. The exhibition closes at 5 p.m. Sunday 31 October.  


Which means that Hallowe'en is fast approaching, likewise the birthday of Steve's dad.  He died of mesothelioma in 1992 as a result of exposure to asbestos when working in the Bristol shipyards in the run up World War II, years before Steve was born.  The horrible co-incidence of father and son contracting the same disease but from completely different sources has not escaped us. I'm pleased to say that treatment, attitudes and survival rates have improved immensely since then.  But there is still a long way to go, as we know.....


Last but not least, happy birthday for yesterday Sarah! 

Trigger litigation

On 16 October, I mentioned the Court of Appeal judgement that has set the cat amongst the pigeons in terms of mesothelioma damages claims.  An article written by Sarah Hunt of Shoomiths, a national UK law firm, summaries the position clearly and succinctly, so I have reproduced it below.  


One step forward, two steps back as they say.  Let's hope the Supreme Court can sort this out quickly and rationally........

Mesothelioma victims face delay and uncertainty following 'trigger litigation'

Following the Court of Appeal's long-awaited decision on interpretation of insurance policies in mesothelioma claims - known as the 'trigger litigation' - the judgment has only increased asbestos victims' uncertainty.

A person may be exposed to asbestos negligently as long as 50 years before they actually develop mesothelioma, an asbestos related cancer. 

Three insurance companies asked the courts to consider the wording of their policies to determine when they would have to pay out – either when the exposure to the asbestos occurred or when someone develops symptoms.

In 2008, the High Court determined that it was the insurers providing cover when the asbestos was inhaled that would have to pay.

The decision meant greater access to justice for victims of asbestos, because if the court had found that the trigger was when symptoms developed, people would be prevented from bringing a claim if the insurance company was no longer in existence and therefore unable to pay out.

Of course, insurers providing companies with cover against asbestos exposure – and who were 'on cover' at the time the symptoms developed - were for years receiving insurance premiums, but have now avoided having to pay out on claims.

However, the Court of Appeal examined individual insurance policies, finding that in some cases it would be the insurers who were on cover at the time of the exposure that would pay out; while in others, it was the insurers who were on cover when the symptoms started.

The decision was further complicated by the three Court of Appeal judges taking three different approaches in reaching their decision.

This has created uncertainty for both insurers, who don't have clear guidance from the court about how the wording of their policies will be interpreted; and for people diagnosed with mesothelioma who are left uncertain whether they will be able to claim for the debilitating and ultimately fatal illness they're suffering from.

The insurers involved have been given permission to appeal the decision, which means there will be no certainty until the Supreme Court rules.

Many mesothelioma victims are unlikely to survive to hear the outcome of the appeal.

New regime

For some time now, Steve has been taking supplements to help boost his immune system - vitamins and omega 3 (fish oil).  He has has also been taking a medicinal mushroom extract Agaricus Blazei. This contains a substance called beta glucans, known to stimulate the natural killer cells which are an important part of the body's immune system. Whether some or all of these have played an active role in keeping Leo at bay, or whether that's due to last year's chemo (even though it did not produce a noticeable response in terms of tumour size reduction) we honestly don't know. But something seems to be helping him stay stable, so he continues taking the tablets!


Yesterday he added another weapon to the defense arsenal - celecoxib. This is non-steroidal anti-inflammatory drug (NSAID) which is used to treat arthritis, amongst other things. It's a selective COX-2 inhibitor which (in plain English) reduces inflammation and pain, without the known gastrointestinal side effects of non-selective NSAIDs. So it will help him with the problems caused by arthritis more effectively than the ibuprofen he has been using recently. 


However, there is another potential bonus of taking celecoxib.  As noted on the US National Cancer Centre's website states "COX-2 inhibition may result in apoptosis (cell death) and a reduction in tumour angiogenesis and metastasis (growth and spread). So it just possible that whilst helping Steve with his arthritis pain, the drug may play an active role in keeping Leo under control or helping him loose weight. The fact that Andrew Lawson (the doctor with mesothelioma - link top right) also takes celecoxib for pain relief is also reassuring.....


It may be psychological, but Steve says he felt able to move his neck more freely last night - and it certainly looked like that from where I was sitting. Let's hope that soon he'll be able to look straight up without having to lean backwards if he wants to see something up high! We'll have to wait until early December to see if this new regime has any noticeable effect on mesothelioma after taking it for six weeks or so. But you never know.........

16 months and still going strong

It's 16 October 2010, which means it's 16 months since Steve was diagnosed with mesothelioma and he's still going strong, extending the right hand side of the median survival graph for yet another month....Now how good is that?


So much has happened since the last blog, it's hard to know where to begin, so I'll do it chronologically:


Mesothelioma UK 5th Patient and Carer Day
On 2 October, we went to the Patient and Carer Day in London, where we listened to a range of speakers from the UK and abroad.  For me, the stars of the show were the patients themselves, Debbie and Mavis (whose blogs you can access from the links top right) as well as Graham whose PETAL philosophy stood us in good stead last year.  


It was wonderful to meet face-to-face so many people who had been in touch with us electronically......not just those named above, but also Heather, who was one of the first people to contact me through the Macmillan website and some of the meso warriors from the Facebook group. Although he couldn't be there in person, being in recovery from an operation, even Dr Andrew Lawson (link top right) sent a positive message and amazed everyone with his plans for long distance cycling in the Far East next year.  For a conference where a high number of those attending were suffering from a terminal illness, it was a pretty vibrant event!


We also learnt some surprising (and not so surprising) facts

• the majority of mesothelioma patients are not offered ANY active treatment
• 80% of meso patients don't have access to specialist surgery
• if just 1% of the money spent on litigation, meso healthcare and benefits was diverted into research, it would be a huge step forward - lung cancers are amongst the most poorly funded of all cancers, even though they affect a large proportion of the population
• it's better to have chemo early
• those who have a response to first line treatment are more likely to respond to second line treatment
• UK patients can enroll in clinical trials in USA for free, but have to self-fund travel and accommodation
• there is no one data base of all mesothelioma clinical trials ongoing in the UK (no wonder no one really knows what's going on....)
• Cardiff University is at the forefront of research into immunotherapy, but its clinical trial of vaccine 5T4 TroVax is already oversubscribed before it's even opened

Paris

What do you do after attending a conference in St Pancras? Why, you jump on the train and hop off to Paris, especially if you are lucky enough to have been given some Eurostar vouchers for your birthday, like me!  By 10 p.m. on Saturday, we had arrived at the flat where we were staying for our short break, and at midnight, we were standing under the Eifel Tower watching it glisten in the darkness.  

Over the course of the following days we had some culture, good food and wine, re-visited some favourite haunts, explored places that were new to us, walked our socks off and generally enjoyed ourselves immensely!

As I see it

Two hours after returning home, we went to the opening of the Oxford Photographic Society's exhibition As I see it, which includes one of my pictures.  It's at the Jam Factory and is open until 30 October, 10 am - 11 p.m. Monday-Sunday. If you're in Oxford, try to see it!  Details http://www.thejamfactoryoxford.com/artcentre.html

London Loop

I left Steve to recover the following day when I set off back to London to walk part of the London Loop, with friend Sarah, who does a great B & B too!

Gardening

Over the last few days, we have been working hard in the garden, cutting back the clematis who has grown up the drain pipe and along the gutter, threatening to pull the whole lot down.  The garden has been sadly neglected over the last two years; it took us three days of climbing, cutting and collecting up greenery to get access to the roof for the builders who are due to do some maintenance, whenever.......

And also.....

Elizabeth and Roger joined us for a meal to say thank you for letting us stay in their Paris flat - we look forward to going back in the spring, all being well..

The law is an ass - a judgement in the Court of Appeal has opened up the door for insurance companies to avoid paying compensation to victims of mesothelioma arising from employer negligence...it all now turns on the precise wording of the insurance policy - whether it covers injury "sustained" whilst employed or whether the policy covers events whilst employed, leading to injury in the future. Mesothelioma can take many years after exposure to asbestos to manifest itself.  The courts have held that the "injury" does not happen until the disease is diagnosed, which is long after the exposure event, and therefore policies which are worded to cover injuries sustained in employment do not cover diseases like mesothelioma which have a long gestation period.  It looks likely that this will go to the supreme court given the implications of the judgement - and seems likely to run and run....whether this will affect Steve's claim, we wait to see...

My next exhibition opens in Woodstock in a week's time, so we'll be busy printing and framing for a few days....

We have a visitor, Prue, staying over on Wednesday night, and we're all off to a meal at the Historic Towns Forum Annual Meeting, where our mutual friend Chris will be saying her farewells to the organization she has directed for so long.....

And last but not least....

A close friend very recently found our that he has a cancer of the lymphatic system, and is about to start chemo.  At least we can give him some idea of what to expect.  I hope that Steve's experience of mesothelioma will give him some assurance that a diagnosis of cancer is not the end....you can still enjoy life, as we do - even though cramming it all in can be exhausting....Richard and Mary, stay positive!

close encounters

We had a close encounter yesterday with a famous artist. Well, the famous artist's self-portraits to be precise.  Paul Gauguin.  It's an eye opening exhibition at Tate Modern...not just the famous pictures Gauguin painted in Polynesia and Brittany, but drawings, prints, ceramics and woodwork, as well as some fascinating background information about his life and times.  Exhausting, but well worth a visit.


More close encounters coming up shortly at the Mesothelioma Patient and Carers Conference in London. There will be talks on a wide range of subjects by representatives of the medical profession, both national and international; Asbestos Support Groups; those working on different approaches to help mesothelioma patients, and patients themselves, including Debbie Brewer and Mavis Nye who both share their experiences on blogs (links top right) and play an active role in the Facebook Meso Group, plus Graham Sherlock-Brown, whose PETAL philosophy was so comforting and inspirational to us in those early days following Steve's diagnosis. It will be great to see and hear them in the flesh!


Not only that, but Prof Vogl from Frankfurt will be talking about chemoperfusion - the technique he uses to deliver chemo to the diseased area, allowing higher doses whilst minimizing the impact on healthy body tissue.  Although it doesn't work for everyone, some - like Debbie - have had truly amazing results in terms of tumour shrinkage.  There's a session on mistletoe - nothing to do with Christmas decorations - about its role in boosting the immune system, and another on the role of immunotherapy, an area of research that's showing promise in the treatment of mesothelioma.  

With us in the audience will be many other people whose names I know well from the online meso community. However, this will be our first opportunity to meet them face-to-face.  Really looking forward to it!  It will be a special day, I'm sure.  And for us, the special day will finish somewhere completely different.  But you'll have to wait and see where :-)  Come back next week to find out more.......

Time

It must be a sign of the times that for his birthday, Jack requested our help with decorating/DIY on his house.  So that's how we spent our time on last weekend. As is often the case with such projects, things look worse before they look better.  However, I'm pleased to say that there was a noticeable improvement by the time we left - it's good to make a positive difference!


His request brought home to me what a precious commodity time is - costs us nothing to give, but is priceless in terms of what it can achieve. Not that we need much reminding, living with the mesothelioma time bomb. When time is not on your side, there is a tendency (for me, at least) to look for ways to squeeze the most out of every single minute. This has resulted in a remarkable year since Steve was diagnosed, when making the most of life and our time together have been top of the agenda.  


However, embracing life full throttle can be tiring and occasionally rather overwhelming. I must remember that we need time to relax and keep on top of everyday things like housework and building maintenance.  There are also negative moments, when it feels like we're in a race against time, hurtling towards the moment when the news will not be good.  At such times, I desperately want to stop the clock and keep things just as they are now.


So where does that leave us?  Well, there's another very busy period ahead of us in October, but we need to balance this out with some chill out time in between. We've started the ball rolling on the maintenance front this morning, with a visit from the builder to look at things which need sorting out before winter sets in.  It's time to take the garden in hand and cut back the clematis and climbing hydrangea which have climbed up to and over the roof, using gutters and the down pipe for support, which is not good.  The birds will just have to find a new nesting place next spring.


In the meantime, there are more enjoyable things to occupy our time.  More of those shortly!

sharing the good news

It's three weeks since we were given the wonderful news at Steve's last assessment that his cancer is still stable.  Don't worry - nothing's changed, except that we now have it writing, and the letter goes into more detail than we were told at the time (or perhaps we just heard the word "stable" and were so relieved that nothing else sank in....)    


In his letter to our GP, Dr Talbot (Steve's oncologist) writes   


"Status:  On examination he appears very well indeed, with no palpable lymph nodes; expansion of the chest is equal; percussion note resonant; breath sounds normal. No sign of metastatic disease.  No cardiac signs.  


Test results:  Today's chest X-ray is stable, with no evidence of disease progression.  


Assessment: Stable disease"


With so much bad news about, I thought it worth sharing the good news again, now that we have more detail.  It's also a positive introduction to the blog for any new readers visiting us via the Mesothelioma and Asbestos Awareness Centre (MAACentre) website, which now features Steve in its "Survivor Stories", hard on the heels of Debbie in Plymouth, who has been such an inspiration to us and other meso warriors and their families.  I've added a link to the MAACentre website on the right....you can never have too much good information.


More good news - tomorrow Friday 24 September - is the World's Biggest Coffee Morning - a fundraising event organized by MacMillan Cancer Support. If you stumble upon such an event, you can eat the delicious home-made cakes without feeling guilty, knowing your contribution is helping support people with cancer.  Follow the link on the right to see what's on offer near you. 


Our plans for the next few months are coming together - family visits this weekend; a trip to Gauguin exhibition at Tate Modern next week; meeting up with the meso warriors and their supporters next weekend - it will be great to see some of our virtual friends face to face, at last!  Straight after that, we'll be using one of my special birthday presents - more of that in a future blog :-)  


There are more get-togethers with friends in the pipeline - some here, some a bit further away in the UK and abroad - as well as a couple of exhibitions to prepare for in October. In fact, lots to look forward to.  Housework will just have to take second place to enjoying life, which takes priority!

connections

If you read the blog regularly, you will know that my day usually starts by checking the Google alerts for mesothelioma in order to keep up-to-date with news that might bring us more hope. I don't usually open articles about people dying as a result of the disease - it's too depressing.  However, today I followed up a headline "Doctor dies of mesothelioma contracted at UK hospital", fearful that it might be Dr Andrew Lawson, whom we met online back in the spring and whose articles have been so positive (check out the link top right).  


It wasn't a report about Andrew, but another doctor, Prof Kieran Sweeney from Exeter, who had died recently as a result of the disease.  The article finishes with a quote from Dr Robin Rudd, the consultant who examined Steve in relation to his damages case.  Small world!  


The report said that Prof Sweeney had been diagnosed with mesothelioma in 1979.  You don't need a degree in maths to calculate that he had survived more than 30 years post diagnosis, if that was true. I had already called out excitedly to Steve to say that I had found a really long term meso survivor, before thinking to myself - can this really be true?  


Further research online indicated that some idiot had got his or her facts wrong.  Poor Prof Sweeney had survived 14-15 months post-diagnosis, meaning that he had had less time to enjoy life than Steve has already enjoyed since he found out his fate. Our raised hopes were dashed......


However, the research that yielded this sad information also led me to a recent article about the same man by none other than Dr Andrew Lawson, written in June this year. Another rapid exchange of e-mails revealed that Andrew is still in there fighting, some three and a half years post-diagnosis and that he lives not far from us!  We are thinking of you tomorrow Andrew.  Hope all goes well with the op and that you have a speedy recovery.  Look forward to meeting you face-to-face when you are feeling up to it!


The research also led me to another site with which we now have a connection.  I have now added Jan Egerton's blog (Jan's Journey) to the list of meso warriors whose story you can follow through the link top right.  It also led me to the Bob Tolley Fund site and blog, which raises funds and awareness of mesothelioma and asbestos-related diseases, set up in memory of Bob who died as a result of mesothelioma in September 2006.  


It saddens me so much to read of other meso warriors who have recently lost their fight against this awful disease and to those they leave behind.  There have been too many on the Facebook group recently.  It tears your heart out.  But we keep fighting.


There have been other connections in recent days - most notably a wonderful reunion with Hillary, an old friend from student days, who managed to fit in a trip to Oxford (with daughter Ruth) on a visit from Australia.  It was great to see you Hil!  I'll post the photo soon. Talkng to Hil brought home to us the international nature of the problem we all face with the mesothelioma time bomb, not just in the UK but world-wide.  If you want to know what's happening in Oz, just Google on "James Hardie mesothelioma" and prepare to be shocked.


I think I need a long walk to clear my head........that's what I'll be doing tomorrow, before going back to work for the rest of the week - always assuming I can remember how to log into the work computer......it's been so long!