Wednesday 29 December 2010

Christmas Day, Boxing Day and more

At the risk of sounding like the BBC, it was great having everyone home for Christmas.  For once, Jack's train from Bristol wasn't cancelled or delayed, so he arrived safely in time for our first family meal of the festive season on Christmas Eve.  

Christmas Day was relaxed (i.e. lazy) with all of us enjoying a long lie in and a late breakfast, followed by present opening which took us more or less up to Christmas dinner in the early evening.

On Boxing Day we were joined by Katie's friend Emily to blow the cobwebs away with a walk through the snow along the Thames to the Perch for a glass of two of mulled wine, before heading back home to Steve who had decided to stay at home and watch others playing rugby, rather than be active himself!

We were joined for tea on Boxing Day by our friends Jon and Sally and their daughters Gabby and Gina - so pleasing to see everyone together!

The house seems unusually quiet now - Jack went back to Bristol on Monday and Katie returned to Yorkshire yesterday.  However, the festive get-togethers continue.....We met up with the extended Green family on Monday night, back in Oxford from Bali, including our first view of young Balthazar who is nearly one year old - what a delight!  Many congratulations to proud grandparents, Ian and Ruth who are celebrating their "Ruby" wedding anniversary today, and to Anne and Colin who are celebrating their "pearl" wedding anniversary on the same day!  Have a lovely day :-)

There's New Year's eve celebrations to look forward to soon, and the Wride family meal still to be rescheduled from before Christmas, when it was postponed because of the snow and dangerous driving conditions.  Today, most of the snow has disappeared to be replaced by a blanket of dull fog which I find rather depressing. Time to put on some music I think to lift the spirits!

"You've gotta dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth." 

Friday 24 December 2010

Christmas Eve

Freezing temperatures, snow and associated travel problems and illness have presented us with a few challenges in the run up to Christmas this year. Although my swollen face is now back to normal, my temperature hasn't dropped below 38C for the last 10 days, in spite of two courses of antibiotics.  After the disappointment of having to call off the big family "do" in Bristol last weekend and a meal with friends on Monday because of illness, weather and travel problems, I'm hoping that a relaxed, chilled out Christmas will do the trick and get both temperature and energy levels back to normal to make the most of the festive season

Social events are not the only things that have been postponed recently.  We have now been advised by the solicitor that the court has adjourned Steve's damages case management conference until 28 January 2011.  The particulars of Steve's claim are being amended to include the potential additional sources of exposure to asbestos that have emerged since the original claim was submitted. Whilst maintaining a complete denial of responsibility, it seems that the defendant has objected to further testing for asbestos being undertaken in the building where Steve carried out demolition works as a student back in 1971. It will be for the judge to decide what happens next.  

So much for the challenges of the last few weeks. Now to be positive and look forward! This is the 100th blog of 2010 - just in time for Christmas Eve!  

Almost all of the jigsaw pieces are in place to make this a very special time of the year.  With help from a neighbour, we managed to dig the car out of the snow on Wednesday and are now stocked up with food for the festive season. Postal services have resumed, with bundles of cards being delivered these last three days. It has been wonderful to catch up with everyone's news! There are presents under the tree and the house is now all dressed up for Christmas.  

George will be leaving us shortly to spend time with his family, and Jack is due to arrive in Oxford by train from Bristol this evening.  Here's hoping they both have safe and hassle-free journeys!  

Unless the temperatures rise unexpectedly, the snow which is still blanketing this part of the country will be here when we wake up tomorrow, so it will be a white Christmas, even if nothing falls from the sky.    

Around this time last year, I wrote that unspoken, but there in all our minds, were thoughts of how Steve would be for his next Christmas, the second since he was diagnosed with mesothelioma.  I am so delighted and relieved by the fact that his condition remains stable.  May it be so again next year, and for many years to come!  We both appreciate how fortunate Steve is to be in this position and our thoughts go out to those who have lost loved ones over the last 12 months, for whom Christmas will never be the same again.

Wherever you are, whatever you're doing, we wish you a wonderful Christmas and send you our love and best wishes for 2011! 

Tuesday 21 December 2010

Lighting a candle on the winter solstice

Few symbols offer more comfort than a candle blazing in the dark, especially in the bleak mid-winter when everything is blanketed with snow (at least here it is....).

Today, I lit a virtual candle for Steve and all those affected by mesothelioma, whether victim, family or friend. The candle will burn for the next 48 hours. To visit the website and read the dedication, read the thoughts of others who have lit candles or to light a candle of your own, go to the Asbestos Disease Awareness Organization (ADAO) website which you can access from the link on the right, under "Find out more about mesothelioma" and click on "Light a candle Community".  Our candle is identified by the initials LW.

Since it started, some 10,692,400 candles have been lit by people from more than 240 countries, including over 14,000 in the last two days.  We are a large, worldwide community providing beacons of hope and inspiration for each other.  

Sunday 19 December 2010

snowed in...and a change of plan

A conundrum for you:

The christmas tree is is the garden and we want to bring it inside.  However...
The wellies and spade are in the garden shed.
The shed is at the far end of the garden.
The only way into the garden is through the french doors in the kitchen, which open outwards.
There is rather a lot of snow lying right outside the kitchen doors stopping them open.

Mmmmmmm!  I think we are snowed in....

Had things gone to plan, by now we should have been on our way to Bristol for the Wride family festive gathering, where sons and daughters-in-law, grand children and partners and great-grand children all descend on Steve's mum bearing presents and food for a wonderful meal. After hasty round of phone calls last night, the consensus view was that we should postpone the gathering until weather and travel conditions improve. Better to have it late, than someone get stuck in the snow or involved in an accident trying to get there today. 

I don't think we would have been able to move our car anyway. Even if we could dig away the snow behind and in front, there's nowhere to put it without blocking the footpath or the bit of road we would need to drive over to get out of the cul-de-sac where we live.

Nevertheless, our daughter Katie and partner George are determined to travel south today from Yorkshire where they are based, to spend some time with us.  So now it's an anxious wait*, hoping that they have a safe journey to Oxford, albeit one that will be very much slower than usual. 

At least we have plenty of food in the house which had been destined for the Bristol gathering! And a bit more time to work out how to get the tree inside, finish wrapping presents and put up the decorations...

I have now finished one course of antibiotics and the other course will finish tomorrow. It's taken the best part of a week for my swollen face to subside to something approaching normal, although I still feel shattered.  Thank goodness Steve's cold didn't come to anything.  The supplements he takes to help boost his immune system must be having an effect!  Perhaps I should try some.....

* It's teatime and the Christmas tree is now inside, drying off from the melting snow.  Katie and George are home safely.  We can decorate the tree together!

Thursday 16 December 2010

18 months and still going strong

I'm glad you can't see me as I write.  Believe me, you would be frightened.  I look (and feel) like I've gone six rounds in the boxing ring - a horribly swollen face and half closed eye caused by a massive infection in the root canal of one of my teeth.  Poor Steve has had to look after me, do the running around and present wrapping that I would normally do, or at least help with, at this time of year.  

I've been so bound up in my own misery these last few days, that the date had almost slipped by without remark. It's 16 December 2010, which means that it's now 18 months since Steve was diagnosed with mesothelioma and he's still going strong!  Only last week, the oncologist confirmed that there's no sign of any disease progression. How wonderful to be stable in a condition that has relatively little impact on day-to-day life (although the emotional roller coaster goes up and down as usual.......)

Still nothing from the solicitor about Steve's damages case. Perhaps he doesn't want to break bad news in the run up to Christmas.  No matter. The case will either go forward, or it won't.  

We have more important things to sort out and do! However, making plans is difficult when I have no idea how much longer it will take for the antibiotics to have an effect, and traveling this weekend might be tricky given the weather forecast.  I think we'll just have to wait and see how things pan out in the next day or two.  We're far more relaxed about doing things last minute now, having learned over the last 18 months about how to make the most of opportunities as and when they arise, and to take each day as it comes.

It's been lovely opening Christmas cards and reading of your news!  I hope our cards and letters arrive safely (oh dear, just remember we have still to deliver cards locally by hand)  Ah well, perhaps the swelling on my face will have gone down enough to venture out soon without scaring children and small animals!

Tuesday 14 December 2010

you think everything is going OK, then......

Just when we thought we were making good progress on Christmas preparations, I have succumbed to an infection which has put me on a diet of pain-killers and a course of antibiotics.  Not just any antibiotics - the sort which you should not take with alcohol.  With three festive gatherings lined up between now and next Monday, that's a sobering thought!

It's not just me. Other members of the family have been afflicted in one way or another; Steve is fighting off a cold; the Bristol flu bug has pounced on Jack and some members of the wider Wride clan.  Let's hope we will all be over our ailments by Christmas, preferably sooner.......

The weather is also looking risky. The snow showers forecast for the weekend is not good news for long distance travel.  Better make sure we pack a blanket and emergency supplies - just in case........  

Here's hoping for rapid improvements on all fronts!  

Thursday 9 December 2010

Christmas comes early!

The approach to Steve's assessment is always an anxious period.  This time it has coincided with the run up to Christmas and a very intense period of work for me, so stress levels have been rising ........Which is probably one reason why we set off to hospital this morning without taking the paperwork for Steve's X-ray and appointment with the oncologist. On realizing this, we turned around and went home to pick it up, only to get stuck in a huge traffic jam where we could do nothing but sit and watch the minutes tick by, past his appointment time.  Had a horrible feeling this was not a good omen......

However, Steve was seen quickly in radiology when we finally arrived.  Then it was almost straight into the consulting room in the clinic, where the oncologist called by briefly to say hello, shake our hands, remark on how well Steve was looking, before moving on to this next patient and leaving us with the new registrar.  Smiles all round and a huge sigh of relief from us as she gave us the good news that the X-ray showed no sign of progression and Steve's condition is still stable!  

So Christmas has come early in the Wride household! What better Christmas present could you wish for?  We can now throw ourselves into enjoying the festive season and will be breaking open a bottle of fizz tonight to celebrate :-))  Hope you will join us in a virtual toast, wherever you are!

Tuesday 7 December 2010

Oh happy day :-)

There are some days when things seem to go right. This looks like being one of them!  OK - nothing life changing, but the cumulative effect of little things going well is enough to brings smiles to our faces :-)

Steve was whooping with joy first thing when he heard the news of England's decisive victory over Australia in the Ashes test match in Adelaide!

We were dancing up and down a few hours later on hearing that both Steve and I have had prints selected for the 2011 Royal Photographic Society's Members Exhibition which opens in February next year.  

Shortly after that, Jack phoned to say that he had accepted a quote to install new heating in his house in Bristol - even better, they are starting on Monday!  Great for our son who has been suffering horribly during this prolonged cold snap, and good news also for his visitors, including us!  

And now the freezing fog has cleared, sun is shining, the sky is blue and the frost on the trees is looking wonderful.....

.....Let's hope this run of nice things is a good omen for Steve's next hospital assessment on Thursday!

Thursday 2 December 2010

Telling it her own words....

Top right you will find a link to Mavis Nye's blog.  Mavis developed mesothelioma as a result of washing her husband's clothes, not knowing they were covered in asbestos fibres.  Not only does she write a blog, today Mavis announced that her book "Meso Warrior" was published two days ago and is now available at Amazon as an e-book.  Proceeds from the sale will be donated to Mesothelioma UK.  

If that wasn't enough, her story appears in the Christmas edition of Yours magazine.  

What a woman - well done Mavis!  You do the meso warriors proud!

Wednesday 1 December 2010

Feeling rather festive!

We have spent the last few days getting into the festive spirit in Brussels (the city not the vegetable) where we stayed with Angela, a friend gong back to school days, and her husband David. 

The Eurostar whisked us from St Pancras to Belgium in a little over two hours, via the snowfields of Kent.  On arrival, Angela whisked us from the Gare du Midi into the Grand Place in the heart of Brussels, via wonderful galleries full of chocolatiers whose windows were groaning with chocolate St Nicolas figures and other Christmassy things.  

We enjoyed a short Son et Lumiere show which animated the facade of the amazing Hotel de Ville with snowflakes of light and a tumbling Father Christmas and peered into the full size nativity scene with real sheep, before warming ourselves up with mulled wine and a waffle at a historic hostelry nearby. Then it was on to Angela's house on the metro, with advice about how to navigate the system and use the ticket validating machine - so much easier when someone who knows the ropes shows you what to do! David was waiting for us when we arrived home and it was not long before we were sitting eating a splendid meal and catching up on news before bedtime.

In the days that followed, we did some sightseeing around the upper town where many of the grand public buildings are located, took in some culture at the Musee Magritte, not just the familiar surrealist images but much more besides. We also did a tour of the home and studio designed by Victor Horta, probably Belgium's leading art nouveaux architect - which was stunningly beautiful.  And took our first trip on a Brussels tram!

The next day we ventured off exploring on our own, visiting one of the city's best flea markets  - a sort of cross between an antiques fair, car boot and jumble sale.  Might have been tempted to stay longer, but for the icy winds.....On to the metro and up to Heysel to see the famous Atomium, a gigantic structure originally designed as an exhibit for a World Fair.  

We ended up back in the historic core as it was getting dark, eventually finding our way to the Christmas market in Place St Catherine, where the square was lined with hundreds of stalls and there were roundabouts, an ice rink and a big wheel.  Even better, the tented cafe in the centre was wonderfully warm and we were able to thaw out with vin chaud, before making our way back to Angela's house. 

The snow was falling thickly as we emerged from the metro, but that didn't stop us walking to a lovely local restaurant nearby for a meal out later that evening with Angela (David having gone to Finland for a work-related meeting). Thank you so much Angela and David - you are wonderful hosts!

Our journey back on Eurostar gave us wonderful views across the snowy landscapes of Belgium and northern France, and blizzard conditions in Kent as we emerged from the tunnel. Luckily for us, most of the snow had disappeared by the time we reached Oxford, so an easy journey home from the station.  

Although the pre-trial hearing took place while we were away, there was no news waiting for us from the solicitor on our return home so we still don't know what has happened in relation to Steve's damages case.  Let's hope that no news is good news.....

No matter....our trip to Belgium has ignited the Christmas spirit!  The advent calendar is on the mantlepiece and we have opened the first door/drawer (and eaten the chocolate inside!) Steve has finished designing the Christmas card today, so ready to start printing. I have been out braving the cold to start buying Christmas presents (and to pick up my bus pass - so an easy trip home with a heavy back pack!) One of our neighbours has invited us to a "winter warmer" on Friday week, and another friend has suggested a get together on New Year's Eve, so the social calendar is gathering some more momentum. 

I came back to the good news that four of my images have been selected for publication in an international photographic magazine - that's four issues in a row, so I'm well pleased!  Have to get on and look at the photos we took in Brussels now.....Steve was delighted to have received an unexpected phone call from Graham Sherlock-Brown just to say hello, how are you?  Graham is a fellow meso survivor whose PETAL philosophy (blog 20 June 2009) set us on the right track back in the early days post-diagnosis. He is now trying to persuade meso warriors to take up the pedometer challenge (double your steps over a specified time period). Maybe when the pavements are less icy......

I'm hoping that all the festive season preparations will help keep our minds off Steve's next hospital assessment which is fast approaching.  Keep your fingers crossed that it will bring good news for Christmas x. 

Friday 26 November 2010

The long arm of the law

This week seems to have been dominated by Steve's damages case.  We met the solicitor on Monday to go though all the things Steve had remembered after reading the documents disclosed by one of the defendants. 

The good news is that no one disputes Steve's account of events which we think were the most likely cause of exposure to asbestos dust - knocking down walls to create a big open plan studio in the School of Architecture where he was a student in the 1970s.  The bad news is how difficult it is to prove "beyond reasonable doubt"  that the work he did actually disturbed asbestos in quantities above the background levels generally found in the atmosphere.  

No detailed construction drawings have been disclosed specifying how concerns about fire resistance were addressed. Although asbestos is the obvious answer, proof is needed.  The walls were demolished nearly 40 years ago so the physical evidence is long gone.  A report on asbestos in the building dated 1983 states that most of the asbestos insulation and lining had been removed since 1974. Frustratingly, there are very few records of what was taken out of where during this period, and nothing specific the the part of the building where he was involved in demolition works.  

We are therefore looking at what has been found in the building since the 1980s, including floor tiles and adhesive, panels under windows and paper linings to pipework and under insulation in service ducts, all of which have since been sampled and found to contain asbestos of various types which could have been exposed or potentially damaged when the open plan studio was created.  

The other avenue to explore was to inspect the building as it stands today to see if there are any remnants of materials still in situ which might contain asbestos.  That inspection took place on Tuesday, with ourselves, our expert witness and various people from one of the defendants.  As a result of that inspection, our man has asked for more samples to be taken from a couple of places which may help Steve's case.

The next piece in the jigsaw arrived today - an updated statement for Steve to check through, amend where necessary and send back to the solicitor.  

Next Monday there will be a pre-trial hearing with our team and the defendants.  We won't be there, but will find out what happens afterwards. The long arm of the law is therefore stretching out at present, but whether it will find anything still remains to be seen.

We've had enough of court paperwork for the time being. It's less than two weeks now to Steve's next scan and assessment, a nerve wracking time - the stress levels are already starting to rise.  However, this time round we have a welcome distraction.  If you want to know what that is, then drop by next week! In the meantime, winter has arrived. On with the thermal layers, hats, scarves and gloves - stay warm and don't slip on the ice!

Sunday 21 November 2010

Happy days

The last few blogs seem to have been invaded by a rather sombre mood.  Things have been much better recently!  

Last weekend we had a grown-up sleepover with Paul and Veronique, old friends from my days at the City Council. That was preceded by a wonderful meal and good company on Saturday night.  Many thanks to you all!

This weekend, we have been hosts to Helen and Rob who came down from Leeds on Friday night, braving fog and horrendous traffic, and Anne and Colin visiting who drove up from Chichester at the crack of dawn on Saturday morning. We have been putting the world to rights until the wee small hours over a good meal and several bottles.  We also managed to fit in a bit of culture, visits to long forgotten corners of Oxford and a walk along to Thames this morning for lunch at  riverside pub. Such good company and so considerate and helpful - in fact, perfect guests! 

Next week, Steve's court case moves forward again.  We have not one, but two, meetings in the pipeline..  One with the solicitor and the other with our expert witness, who wants to be shown around the site where we believe Steve was exposed to asbestos nearly 40 years ago.  This is not quite how we had envisaged spending our lunchtimes next week, but it's necessary for our team to be thoroughly prepared for the pre-trial hearing at the end of the month.  

There have been some interesting reports in the medical press this last week about a number of drugs which seem to be getting better results for mesothelioma than the standard treatment currently on offer. Finding a cure is still a long way off, but at long last, things seem to be moving in the right direction!

Lastly, a picture speaks a thousand words and I haven't been posting many recently.  Time for a gallery feature soon, I think!

Sunday 14 November 2010


All over the world on Wednesday and again today people have been remembering those who lost their lives in conflict.  Our hearts go out to those they left behind. 

We also remember those who survived the conflicts, only to have their lives taken prematurely as a result of exposure to asbestos; exposure which could have been avoided with the right precautions.  Steve's dad numbers amongst those victims.  Our hearts go out to those they leave behind, including the wives and children contaminated by the lethal dust as they washed dirty work clothes unaware of the risks they were taking, or hugged their fathers as they returned home from work, and in the process breathed in the fibres that were to come back to haunt them as they hugged their own children many years later.  

We look back to the possible causes of Steve's exposure in frustration, anger and in grief - natural emotions, in the circumstances - but probably heightened this last week by seeing so many poppies, not to mention the aftermath of going through the court papers.  Still that's over now, at least for the time being. 

Steve's next assessment is less than four weeks away - always a nail-biting time - so we are making the most of the here and now, including a wonderful meal yesterday evening with old friends Paul and Veronique, and a sleepover at their house so we could enjoy the wine and stay up till the small hours in good company without having to worry about the drive home!  

More get-togethers planned for next weekend and the weekend after and may be even in-between....isn't it great to be sociable?  

Sunday 7 November 2010

No escape

If you are a film buff (or even if you're not) the name Steve McQueen will probably conjure up memories of the actor making a bid for freedom by riding his motor bike over a barbed wire perimeter fence around a POW camp in the movie "The Great Escape."

What you may not know is that today is the 30th anniversary of Steve McQueen's death in 1980.  Of more significance for this blog, is the fact that he died as a result of mesothelioma after breathing in asbestos fibres when stripping out asbestos insulation from pipes in naval vessels as a mechanic in the US Marines, before his film career took off.  Mesothelioma is disease from which, even today, there is no escape in terms of a cure.

However, treatment has moved on a great deal in the last three decades.  I write today's blog in the hope that my Steve, my very own hero, will be able to take advantage of the progress in treatments which may at least offer long term stability, if not complete remission from this horrible disease......And, of course, that goes for all the other meso warriors out there - and their families and friends - who are fighting for their own lives and the lives of their loved ones as I write, as well as for those who will receive the devastating news of mesothelioma diagnosis at some point in the future, the seeds having been sown already without their knowledge.

A rather sombre thought for today - perhaps it's the effect of shorter days and darkness coming early......Anyway, we're back at home now after a short break visiting family to cheer ourselves up after the marathon of going through the court case documents, and it's still daylight!  Time to get on, unpack, and sort ourselves out ready for tomorrow, when "normal" life resumes with my return to work. 

Friday 5 November 2010

a forest of paperwork

We collected a large box from the Royal Mail office last Saturday. Seeing it was from the solicitor, we put off opening it until Monday so that it didn't spoil the weekend or Halloween.  That would have been Steve's dad's birthday, had he not died in his late sixties as a result of mesothelioma. But we had to face up to dealing with it eventually.....

Inside the box were two witness statements from one of the defendants in Steve's damages case plus their related "exhibits", and two large lever arch files stuffed with 60+ documents from the "Disclosure List".  This box of delights was followed up by another bundle from the defendant's expert witness, with yet more exhibits, which arrived at the start of this week.  A lot of paperwork to go through, but go through it we did. 

It took much longer than expected to sort, read and digest the various documents, and for Steve to write his observations on what we had seen and convey these to the solicitor. The journey through this forest of paper work took us on a roller coaster of emotions, but we got through it eventually.  During this process, the sequence of events going back to December 1971 which eventually lead to Steve's mesothelioma diagnosis last June came into much sharper focus than ever before - memories were triggered and photos rediscovered, which was helpful. However, it also meant that the old wounds were reopened and salt rubbed in. Not surprisingly, we were feeling a bit tired and emotional by the end of it all.

Spending so much time on the court case was not what we thought we would be doing this week, our last at home together before I resume work on Monday after a very long break. But hey, it's done. We've put the lid on the box and have taken ourselves off to wind down from the experience. It's so tempting to put the lot on a bonfire tonight and enjoy the warm glow!  

Whatever you are doing tonight (or tomorrow) to celebrate Fireworks night, have fun, but please take care....


Sunday 31 October 2010

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!

Wednesday 27 October 2010


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......

Monday 25 October 2010

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! 

Tuesday 19 October 2010

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.

Sunday 17 October 2010

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.........

Saturday 16 October 2010

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
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

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!

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 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 can still enjoy life, as we do - even though cramming it all in can be exhausting....Richard and Mary, stay positive!

Thursday 30 September 2010

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.......

Tuesday 28 September 2010


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!