Down on our knees, back on track and birthday wishes

Last week, we spent the best part of three days down on our knees - at least that's what it felt like!  

Although we have tackled quite a few DIY jobs in our time, laying ceramic floor tiles was a first time experience for us and not without the odd hiccup - not to mention sore knees (note to self - knee pads would be a good investment...) However, by the time we left our son's house in Bristol on Thursday, the job was going in the right direction and starting to look good.  

We were standing up and back on track on Friday.  The track in question was the Silverstone racing circuit and the occasion, the Silverstone Classic which bills itself as the world's biggest classic motor racing festival.  We were there for the qualifying sessions for the F1, Le Mans and Touring car races which took place yesterday and continue today. Friday was not nearly as crowded as on race days, so easy to move around and sit down when and where we wanted. No long queues for food or loos...and the sun shone all day!

Not only did we enjoy most of the qualifying sessions from a variety of grandstand viewpoints, there was also the opportunity to ride on an original Route Master bus (taking me back to my childhood in London) which linked the paddocks at either end of the site.  

There we were able to view the cars being made ready before hitting the circuit (or being put back together after a session) and stand in the pit lane, soaking up the atmosphere.  

In the Wave paddock, Steve was delighted to find a classic Bristol racing car, one of his childhood favourites (he asked for and was given the Dinkey Car toy version for Christmas which now sits proudly on the mantlepiece at home). 

To see the circuit from a different point of view, we went on the 40m high big wheel which forms the centre piece of the vintage fun fair offering free rides to all visitors.  We also enjoyed a spin on the 1893 Ferris Wheel, which although not as tall, goes round much faster than the big wheel!  

However, we topped both wheels by taking a pleasure flight in a helicopter, as a late birthday present for Steve and an early one for me.  It was literally just a flight over the circuit which lasted only minutes, but it was another "first" for both of us and great fun! 

We had planned to take rides in Caterham sports car with a professional racing car driver, but were so enthralled watching the last two qualifying sessions (including the fastest ever lap seen at the Classic) that we ran out of time...

As the sun set over the track, we made our way back to the open air music arena to get something to eat and watch/listen to the stars from The Commitments singing sweet soul music classics.  

Half walking, half dancing to "Mustang Sally", we eventually dragged ourselves away, back to the car and home.  What a great day out!

Even on such a wonderful day, mesothelioma managed to make its presence felt in an unexpected way.  Amongst all the motor racing paraphernalia on sale at the event were many pictures of the actor Steve McQueen - an avid motor cycle and racing car enthusiast who did many of his own driving stunts in the movies he made.  A Porsche 917 - made famous by Mc Queen in the film Le Mans - had turned heads in the Historic Sports Cars qualifying session, earlier in the day.  

Photo courtesy of Wikipedia Creative Commons

While you have probably heard of Steve McQueen, unless you are involved with mesothelioma, you will probably not be aware that his death in 1980 was caused by mesothelioma as a result of being exposed to asbestos, probably while removing asbestos lagging from pipes aboard a troop ship during his time in the Marines in the late 1940s.  

After our exciting day out on Friday, we have been taking things easy this weekend to recharge the batteries for my birthday tomorrow.  There are three things right at the top of my birthday wish list:  

Firstly, that 2013 goes down in history as the year when a breakthrough is made in the search for a mesothelioma cure.  Its about time for a great leap forward!  

Secondly, that this year will see a global ban on the mining, import, export and use of asbestos.  The world doesn't need it any more.  For the sake of future generations, ban asbestos now.  

Thirdly, I would like a magic wand to ease the emotional and physical pain and suffering of those who have to live with mesothelioma.  I would wave it over all of you - patients and carers, family and friends of those exposed to asbestos, including those yet to be diagnosed but where the seed of the disease has already been sown unbeknown to you.  

We count ourselves VERY fortunate indeed that Steve has yet to experience the very painful and debilitating physical side effects of mesothelioma which many suffer.  My heart breaks when reading the meso warriors blogs and posts on Facebook by those in the meso community who are less fortunate than ourselves in this respect.  However, the heartbreak heals a little when I see the way in which meso warriors support each other.  We are proud and lucky to be part of such an amazing community.  Thank you, each and every one of you, for the support you have given us over the last four years. 

home and (mostly) away

If you visit the blog regularly you will know that we tend to live our lives three months at a time, based around Steve's quarterly hospital assessments.  So far this year each quarter of 2013 has been very different.  

During the first quarter, Steve was having the last two cycles of second line chemotherapy with Alimta and carboplatin and recovering slowly but surely from the side effects of treatment.  Apart from hospital visits and the weekly food shop we rarely left the house, effectively going into hibernation for January, February and much of March.

As spring arrived, we woke up and set out on our travels - visiting three countries in the second quarter of 2013. Madrid, Toledo and Valencia in Spain during April.  Siena, Pisa and the hill villages and rural delights of southern Tuscany in Italy during May.  In June, the Eurostar took us to the south of France - Avignon, Marseille and the hill villages and rural delights of the Luberon.

Having satisfied the wanderlust for the time being, the third quarter of the year has been pencilled in as a time to stay at home and work on the house and garden, adapting it to suit our current lifestyle.  

There are great plans to replace the very dilapidated garden shed with a larger multipurpose garden room and to redesign the garden round it.  We also want to refurbish a bedroom formerly used by our (now grown up) children into welcoming accommodation for visitors, with lots of discrete storage space - and somewhere we can sleep temporarily while redecorating our own bedroom.  And that's just the start of a long list of other jobs for the summer quarter...

With so many things on the house and garden "to do" list, we should have made a start by now.  But here we are, three weeks into July - the month when others have been busy: Andy Murray winning Wimbledon; Chris Frome winning the Tour de France; England beating Australia in the first two test matches in the Ashes series.  Our nephew has become a father (congratulations Matt!)and a Royal baby is expected to arrive today. The UK has been basking in the most prolonged heat wave in years - and nothing has happened yet on the home front here in Oxford!

Although we planned to be at home, for various reasons we have been away from base much of the time since the beginning of July.  

We started the month a few days after our return from France by traveling to Bristol to visit Steve's mum and pick up our son who returned with us to stay in Oxford for a few days during the first week of July.

I then spent part of the following week on an intensive work-related trip to Guernsey.  Two days later we were heading off again, this time to North Yorkshire where we stayed with our friend Rob in Richmond (another town built on a hill - we seem to be collecting them this year) for the launch of the "Best Shots" photography exhibition, which I helped judge.  

It was fascinating to see the 100 Best Shots printed and framed, hanging in The Station - a wonderful venue where you can see art, catch a film, eat out or treat yourself to something special from the artisan food producers.  For once, I found myself in front of rather than behind the camera as the category winners were photographed for the local paper, with a guest judge or two!

Best Shots "Young Snappers" winners and judges

Before leaving Richmond, we explored the castle and broke the journey there and back with a visit to Hardwick Hall (and a welcome National Trust tea room).

Steve at Richmond Castle

One day back at at home and then we were off again to Bristol to help our son with some DIY jobs better suited to a team effort with motorised transport, rather a single pair of hands.  Hard work in the heat!  However, we treated ourselves to a trip to the seaside, an ice cream on Clevedon Promenade, visited the pier and had lunch at the Victorian Gothic Revival House and estate of Tyntesfield, in another National Trust cafe.  

Clevedon Pier

The last time we were at Tyntesfield was in 2009, in one of Steve's "rest weeks" during first line chemo on the Velcade drug trial (Oh I do like to be beside the seaside - 15 September 2009).  At that time, the building was completely covered in scaffold, in the middle of a major restoration.  It was good to see the house now beautifully restored and to reflect on what has happened in our lives since then.  We had hoped, but never assumed, that Steve would still be here to see the finished job, so it was a special experience for us this time round some four years later to see Tyntesfield in all its glory. 

Here we are now back at home for a few days, with a small opportunity to try to catch up on all those things that have been on the back burner for the last three weeks.  It's also about time I rested and recovered fully from the chest infection that started four weeks ago in Marseille and has been hanging around ever since.  Plus there are lots of birthdays on the horizon before the end of the month and some more traveling/days out.  Perhaps we will simply postpone the start of work on the home front until August instead.....

Thinking of all the meso warriors, their families and friends, especially those whose in pain and those whose absence is still very keenly felt by the meso community.  Miss you so much x

A belated bonjour

Last Saturday we enjoyed lunch at a little bar in a village called Lirac, not far from Avignon in the south of France, with our friend Richard who had driven one of his vintage motorbikes 100 km to meet up with us before we returned to the UK.  It was lovely to see him and it was a jolly good lunch too!

Our trip to France had begun in Avignon the previous Saturday, traveling down on the early morning Eurostar train direct from St Pancras International.  Because of the early start, we had spent the evening before in London and met up with daughter Katie and her partner Ed for a meal out to kick start the holiday.  By early afternoon, we had checked into our hotel just inside the city walls and were out and about in historic Avignon, including a visit to the Palais du Papes (Popes Palace) a fascinating place to explore.  

Sunday morning was a stroll round to the river and up to the park, where we took in the views from the terrace 

and watched people "sur le pont d'Avignon" - none dancing though - before meandering our way back slowly through the old town to the hotel to pick up our bags and head off to the new TGV station to catch a train to Marseille, our base for the next couple of days.

Marseille is European Capital of Culture this year, so a good time to visit!  Our hotel was very close to the waterfront area where we explored the old dock buildings which have been converted into new uses and enjoyed a lot of eye catching new architecture, looking lovely in the sunshine.  

In the evening, we walked down to the old port, had a meal in an excellent Tunisian restaurant and wandered around the harbour before making our way back to the hotel under the huge spring moon.  

The next morning, we were back on the waterfront visiting a former docks area area (familiar from the film The French Connection) which is now occupied by the Villa Mediterranee Cultural Centre and the new muCEM museum/gallery, recently opened and worth walking around even if you don't go to the exhibitions.  

After lunch in the old port, we spent some time people watching under the huge mirror canopy designed by Norman Foster, 

before catching a bus out of town to visit Le Corbusier's famous building Unite d'Habitation, with its wonderful roof terrace.  

The next day, after a brief stroll around the local area, we picked up a hire car to explore further afield, stopping at the historic town of Les Baux before traveling on to the village of Goult in the Luberon, made famous in Peter Mayle's book A Year in Provence.  We stayed in a gem of a village house, with a little roof terrace where we had breakfast every morning and drinks every evening.  Perfect for us!

This was not our first visit to France, but it was the first time we had explored the area of Provence to the east of the Rhone, which is famous for its lavender fields, which we were keen to photograph. In a normal year, the lavender would be peaking towards the end of June and the sunflowers would be beginning to flower (you've probably seen those aerial shots of the Tour de France cycle race going through fields of yellow and lavender...)  Well, not this year!  The weather in Europe has been as bad as the UK, so spring was late and the lavender fields were only just starting to colour up.  

The next few days were spent playing hunt the lavender field, in between visiting delightful hill villages and exploring former ochre quarries, where the colour is amazing!  

Quite energetic by day, so great to have a lovely base to return to and relax in the evenings.  

Our journey back to the UK involved changing trains at Lille to go through passport control and security before heading back under the Channel into England, followed by the tube to Paddington in time to catch the last train back to Oxford. We were home by 1 am, but too awake to go to bed straight away, so it was a very long day and a very late night.  But a lovely holiday, in spite of me coming down with a nasty cold while we were there and our dreams of getting wonderful lavender pictures not being realised.  Never mind. Good reason to return another time, all being well!

The pace hasn't slackened much in the week we've been home - a trip to Bristol to visit Steve's mum and deliver her belated birthday present; our son Jack returned with us and stayed here for a few days, plus I've been doing preparation for a work-related trip to Guernsey next week.  And of course, there's been tennis at Wimbledon and the Tour de France to watch on TV, and Steve has been raising the roof watching the Lion's rugby matches.  Apologies to any neighbours who have been disturbed by very loud shouts of joy!

I'm just beginning to catch up with what's been happening in to meso community.  Well done to Mavis and Siobhan (Debbie Brewer's daughter) who addressed a House of Commons Committee about mesothelioma.  That's an amazing feat at any time, but all the more inspiring bearing in mind that Mavis is currently on chemo and it's only a short while ago that Siobhan buried her mum.  Well done too to Debbie's son Kieran who has now finished school and been offered a place at college in September - many congratulations!  

Well done to Tess, who has had her last dose of chemo in this regime and now has the agonizing wait to find out the results of her scan.  Everything crossed for a positive result Tess!  Jan is off on another cruise - it feels like we are ships which pass in the night at present - we return from our holiday just as she leaves on hers...I do hope you enjoy the rest of the trip Jan. I'm hoping that Amanda and Ray have a better time this weekend than last weekend, which was spoilt by pain and fatigue.  Fingers crossed that you can get out and about on that big new bike in this perfect biking weather.  Love too to Lou and Steve in Australia - sending positive thoughts down under....x

today, our minds are in other places, with other people....

Today, our minds have been in other places, with other people...

....Today was the funeral of meso warrior Debbie.  Our thoughts have been in Plymouth with Debbie's family, friends and the meso community who went to say their goodbyes and celebrate the life of this woman who inspired, supported and encouraged others fighting the disease, and raised awareness of mesothelioma and the dangers of asbestos.  

Debbie loved dragonflies. Whenever we see a dragonfly in future, we will think of you Debbie.  Thank you for being there for us and the meso warriors xxx

....Today, our thoughts have been with Janelle's family and friends in Rushville, Indiana.  Janelle lost her battle with mesothelioma last night.  She was only 37 years old - another life snatched away needlessly....Our hearts go out to her husband and young son xxx

....Today, out thoughts have been in Kent, with meso warrior Mavis and her husband Ray.  Ray had a heart operation this morning, but is now back on the ward recovering.  Mavis is due to have chemo tomorrow. Sending you both lots of love and good wishes for a speedy recovery so that you can enjoy getting out and about again soon xxx

Tomorrow marks the beginning of another adventure for us, so don't be worried if there is another intermission between blog posts.  We are just out there having fun and making the most of life!   :-)

Four years on....

16 June may not mean much to you.  However, for us it has a special significance.  It's when Steve found out he had mesothelioma.  

That was in 2009.

Today it's 2013.

Four years on and he's still going (very) strong!

With so much sad news recently for the meso warriors, their families and friends, I hope very much that this anniversary will put a smile on your face and that you will join us in a virtual drink to celebrate Steve being a four year survivor! 

Cheers, everyone :-) 

a week in the shadows

I was originally going to write that this has been a "challenging" week, but in truth it's been gut wrenching...

The unexpected news that Debbie had lost her battle with mesothelioma last weekend cast a long, deep shadow over us.  This was swiftly followed by news that two more meso warriors, Helen and Colin, had died in the following days and others are clinging to life by the most slender threads. The shadows seem to have become longer and deeper as the week progressed.  Yet another meso death was announced this morning by Lou in Australia.  I can't remember such a week for sad news on the meso front....

Not surprisingly, the mesothelioma community on Facebook has been knocked sideways. However, while we may be down, we are certainly not out.  We take comfort and gather strength from each other through these difficult times, in the same way that we share and celebrate each others good news. We wouldn't have shadow if it wasn't for light.  I'm hoping that next week the balance will be redressed - at least a little - with more light and good news.  

We will certainly have something to celebrate tomorrow....please come back to celebrate with us!

In the meantime, we have soldiered on but it has been a bit of an uphill struggle. We have been arranging our next adventure, something I usually find exciting.  However, this time things haven't gone smoothly.  Accommodation we hoped to book has not been available; I have made silly mistakes about dates (my mind on other things) which have taken time and energy to resolve.  

Accommodation and rail tickets eventually sorted, it was Steve's turn to be frustrated by car hire arrangements - to our surprise, the rental companies charge the equivalent of two days car hire if you pick up and drop off the car in different locations, even though in our case the pick up/drop off points are only 100 km/just over an hour apart in travel time.  Too late now to unpick all the other arrangements; we will know better in future....

Thankfully, not everything has been so difficult or frustrating.  Our business accounts and report were signed off without a hitch and my tax return has been sorted. Thank you Victoria!  A tutorial for one of my images has been published in the 1X book Photographic Visions and two more have been requested and now written for the next tutorial book.  

Shortlisted images in the Best Shots Photographic Competition (where I was a 1st round judge) have been reviewed and the winners selected by the 2nd round judges. I've written a few sentences about four of the prize winning images ready for the big announcement and exhibition launch in July, which we hope to attend.

We are now enjoying a weekend with daughter Katie visiting, talking long into the night over a bottle or two of wine.  May this be the start of the good times returning....


....A big group hug to all the meso warriors out there, their carers, family and friends x

A tribute to Debbie

It is with a heavy heart that I dedicate today's blog to Debbie Brewer. 

Debbie died last night in her sleep some seven years after being diagnosed with mesothelioma in October 2006, told that she had 6-9 months to live and that fighting this aggressive cancer was fruitless.  

Debbie decided there and then that she was not prepared to lay down and die.  Since that time, she has lived and full and eventful life.  She has not been afraid to try new approaches to treating this disease as well as conventional treatment.  She been an inspiration to other people around the world who have been given the same devastating diagnosis and has provided practical and emotional support to them and their loved ones.  

We contacted Debbie just a few days after Steve was diagnosed with mesothelioma in June 2009 and she responded within hours, offering her support and giving us her phone numbers in case we wanted to talk.  She has been with us every step of the way since then.  

We will miss you so much Debbie.  You will always be in our hearts.  Thank you for being there for us, and for the worldwide meso community.  

We send our love and big hugs to your close friends and family, especially your children Kieran, Siobhan and Rich.  

Debbie, you have lit a candle in memory of so many meso warriors who have lost their lives to this disease.  With tears in my eyes, I light one for you now. Rest in peace.  No more pain.