on the tiles, getting plastered and a garden party

When Steve was diagnosed with mesothelioma in 2009, it seemed almost inevitable - to me at least - that I would be the first in our circle of friends to become a widow/widower, even if Steve was one of the fortunate 10% of victims still alive five years post-diagnosis.  Steve thought otherwise. In the event, he proved to be right.  

Andrew, a friend from our student days, died unexpectedly in May 2011. A few weeks later, we gathered together with our friends for a wake in Andrew's garden together with his wife Jan and their children Susie and Charlie, all still stunned by his untimely and unexpected death.  

We were all back there again in Reading yesterday but, I'm pleased to say, in very different circumstances: a party to celebrate a newly created garden incorporating many of Andrew's "treasures" (often salvaged from skips or found in the street) in the design.  And jolly wonderful it looks too!  

There were other things to celebrate too. Andrew and Jan's daughter Susie is expecting her first child; their son Charlie had married since Andrew's death and was there with his wife; there was even a new baby to enliven the proceedings, the latest grandchild of our friends Bob and Gill.  Not to mention the superb tea laid on by Jan, washed down by prosecco....and the sun shone. Who could ask for anything more?

It was a lovely way to finish a very busy week spent helping to lay more floor tiles in our son's kitchen in Bristol and getting plastered at home in Oxford, where the soon-to-be guest room's skim coat of new plaster has now dried out ready for painting.  No guesses as to what we've been doing today and what will probably keep us busy for the rest of the week, in between other commitments. 

Less than a week to the start of September and less than a fortnight to Steve's next hospital assessment.  Hopefully, the distraction of decorating, carpeting and furnishing the spare room will keep our mind's off the outcome of the assessment which, as usual, will shape our lives for the next three months at least.  

Visitors and visiting

The last week seems to have been dominated by visitors coming to our house and us visiting other people - a mix of "business" and pleasure...

Two of our visitors were plasterers coming to give estimates for the cost of skim coating the walls of what will eventually be the guest room.  Other visitors last week were much more sociable. Our friend Prue stayed overnight on Tuesday and we had a lovely evening catching up on news and putting the world to rights over a meal and some wine.  We did the same again later in the week with another friend, Murray.  Ironically, although he only lives around the corner our lives have very different patterns so we have to make an effort to meet up, rather than bumping into each other in the street.  But it's worth it!

Our trips out have also been a mix of business and pleasure - several visits to the paint shop to buy samples, order and collect paint, and to the carpet store to look at samples and eventually order carpet.  I'd forgotten how long it takes to research and pull together all this interior design stuff!  In between, the big clear out has continued and we have been taking more bags of donations to the charity shop and more bags of junk to the recycling centre.  But there's still a mountain of stuff to go through....

Our hard work on the home front was rewarded by a very enjoyable meal out with friends Ruth (host and cook extraordinaire) Anne and Colin, visiting Oxford from Chichester.  One of those lovely lunches that lingers on past tea time.

All our friends remarked on how well Steve is looking at the moment.  And he's still feeling good, which we hope bodes well for the next hospital assessment in early September (although we never take the outcome for granted, so as always most plans beyond that date are very fluid or only lightly pencilled in...) Ironically, it's me that's coughing (still) after picking up an infection in France late in June.  If it hasn't cleared up completely by the first week in September, I have to contact the GP again to follow up.  

Without wishing to sound like a hypochondriac, when one member of the family develops mesothelioma as a result of asbestos exposure, lurking in a dark recess at the back of the mind is the niggling thought that others in the family may have been exposed at the same time by the same source, or by secondary exposure from dust on clothes - especially if you have lived, studied and/or worked together in the same environment for many years as we have.  In such circumstances, any prolonged chest problems needs to be properly investigated to rule out asbestos-related disease.  However, I'm sure my cough is just a stubborn foreign virus rather than anything more sinister.

But I digress....Next week there will be more comings and goings, visiting and visitors and hard work topped off by more socialising, which we are looking forward to very much.  And it all kicks off again tomorrow, so we must get ourselves sorted out now.

As always, we send our love to all the meso warriors around the world who are at various stages in their journey.  In particular, to Jan who is feeling particularly low at the moment and Lou in Australia, who is back on chemo but still managing to be very positive as she waits for news of the birth of her next grandchild, due shortly.  

Physical and fun

This last week has been a mixture of being physical and having fun.  

The physical bit started in Oxford on Monday, when we dismantled a timber platform in the spare bedroom.  

Designed by Steve and built by both of us over 20 years ago, the structure originally provided extra play space for son Jack, then a sleeping platform for daughter Katie.  In recent years, it has become a storage area for picture frames, mounted prints, spare bedding and cushions.  It has also been the source of many bumped heads for our visitors sleeping on the sofa bed below.  

It was a testament to the strength of the space frame design and quality of the construction that it took us all day to dismantle and remove, but it's done now. It feels like the end of an era, but life goes on....And it's high time the room had a makeover!

The physical bit continued later in the week in Bristol where we have been helping our son tile the floor of his kitchen. Still a work in progress when we left, but the progress is significant.

In between we had fun!  

We went to the seaside, had ice creams on the promenade at Western-Super-Mare and strolled along the beach and under the pier.  

We crossed the River Seven into Wales and visited Castle Coch, a Victorian Castle built on medieval remains 

and then on to see The Guardian, a huge sculpture of a miner to commemorate the 50th anniversary of the Six Bells colliery disaster in 1960, when 45 men lost their lives in a gas explosion.  Designed by Sebastian Boyesen, the statue is made of fabricated ribbons of steel and stands 20m tall on its plinth.  

Our visit coincided with the Bristol Balloon Fiesta.  As we returned to Jack's house on Thursday evening, the sky was full of hot air balloons including some special shapes, skimming the rooftops to land at the park close by.  

We also fitted in a visit to Steve's mum in her care home and dropped off some games and toys to our great niece Esme, where we enjoyed a cup of tea and caught up with family news from our nephew's partner Kate.

After all this work and play, we are catching up on some rest this weekend and news from the meso community before another busy week begins on Monday. 

more celebrations, some sorting out and one month to go before the next assessment

The extended birthday celebrations started the Friday before last with a day out at the Silverstone Classic event and finished today, waving goodbye to daughter Katie and partner Ed as they headed back to London after spending the weekend with us.  

In between, Steve and I had a day out on our own in London on Monday (my actual birthday) going to exhibitions at Tate Britain before returning home for birthday cake and prosecco; lunch with our friend Ruth on Tuesday; a second "birthday" meal out with Katie and Ed on Saturday evening and a visit to Oxford Castle, playing at being tourists in our own city.  

However, it hasn't been all play...In between the celebrations, the big "spare room" clear out has started and we now have many bags ready to donate at Oxford's new Cancer Research supershop which is due to open on 12 August, not far from where we live. One large item of furniture has gone to a new home via Freecycle, giving us much more room to manoeuvre in what will eventually be the guest room.  But there's still a long way to go....

Although Steve has been generally well, a couple of times over the last week he has felt a bit light headed.  We wonder whether the recent very sultry weather conditions have played a part.  He seems to be OK now, thank goodness. I have been unable to fully shake off the cough that started in France nearly seven weeks ago, so I think its about time to get it checked out - always assuming the GP can fit me in before we go off on our travels again.  

Our little health annoyances pale into insignificance when compared with the pain and suffering of other members of the meso community.  Pain management seems to be a very difficult thing for the medical profession to get right - too little and there is breakthrough pain; too much and the sufferer is constantly drowsy, sleeping or groggy.  What a horrible dilemma....

June and July seem to have flown by.  It's now just a calender month before Steve's next hospital assessment in September, so it's important that we keep busy rather than get distracted by thoughts of what may or may not happen when we next speak to the medics.  I wonder whether we can finish the guest room before then as well as make time for some sociable and pleasurable things.  Time to set some targets, like fellow meso blogger Tess...

Sending much love to the meso warriors, especially Jan who is still having a really tough time; Ray who is back on painkillers; Ernie who is in a hospice while they try to find the right balance/combination of painkillers; Barry also in a hospice, after the local hospital failed to spot a DVT, even though his wife had pointed out the obvious symptoms, and to Lou in Australia who hears the result of her PET scan tomorrow....also to Linda Reinstein in the States, whose home was robbed and precious things taken, including gifts from her husband Alan (who died of mesothelioma) and their wedding rings...how devastating is that? 

On the good news front, Tess has finished her chemo, had a good response and is now enjoying summer, and Mavis is managing well with her chemo even though appointments don't always go to plan....

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