Doing something positive

Ending the week on a high

2012-01-29T17:51:00.000Z

It's been a mixed week, for the most part normal but with a few more interesting events.

The normal pattern of day-to-day life was interrupted by Steve's annual hospital check-up on Thursday afternoon to see what's happening on the arthritis front, including how his replacement finger joint is doing. As there has been no change for the last few years, he's been signed off for two years now. So it's official - he's got to be around in January 2014 for his next appointment at the Nuffield Orthopaedic Centre!

There was some good news on the photography front, with seven images accepted for various exhibitions in Holland and the AFIAP application (Artiste Federation International de l'Art Photographique) finalized and posted off at last.

The week ended on a high, with our friends Anne and Colin staying over on Saturday night. We visited the Ashmolean Museum and had lunch out at Oxford Castle yesterday, followed by an evening meal at home catching up on news and setting the world to rights over a few bottles of wine, well into the wee small hours of the morning. We blew the cobwebs away today with a circular walk north along the Thames, across Port Meadow in the mist, through Jericho and Walton Manor to the University Parks then back home via the city centre, the Isis and Christchurch Meadow, following the Thames towpath around to Osney and home. A longish walk, but taken at a leisurely pace. Steve managed without any apparent problem, which is great. Thanks Anne and Colin for being such wonderful guests!

I heard today that my appointment to the Guernsey Planning Panel has been confirmed. I'll be taking up the post in March and spending 4-6 days a month with my "Planning" hat on, mainly working from home with an overnight visit to the island most months to chair the tribunal which decides planning appeals.

Snow is forecast tomorrow morning in Southampton. Let's hope it's all gone by the afternoon when I'm due to fly over from Southampton Airport to the Channel Islands for my induction training in Guernsey. I shall have to get my brain in gear. I'm not sure what Steve will get up to while I'm away. You'll have to drop by next weekend, when normal service resumes, to find out!

Gung hay fat choy!

2012-01-23T23:58:00.000Z

The Chinese New Year of the Water Dragon is here - Gung hay fat choy!

Traditional Chinese New Year Decoration. Image credit: Fanghong via Wikimedia Commons.

While trying to find out a little more about the year of the Dragon, I came across predictions for the year ahead for other Chinese signs. This is the prediction for those born in the year of the Pig, like Steve.

The year of the Dragon will be a little fast-paced for the Pig but you should take initiative to stay in the game. The Dragon will shake things up for the Pig in his relationships, but this may not be a bad thing. The Pig has seen good health and good wealth in the past two years, and this trend can continue if the Pig stays smart and takes some risks.

Got that Steve? Stay smart and take some risks!

Labours of love

2012-01-22T23:37:00.000Z

We are back at home after five days hard labour in Bristol.

Sorry, I exaggerate ....Five days of scraping, filling, sanding and painting; fitting and fixing; sorting, clearing and recycling; researching and shopping....We'd forgotten just how demanding DIY can be - we're exhausted! However, when it's a labour of love for family and/or friends, it's all worthwhile.

Now we've got our eye in, we need to keep up the impetus and start an early spring clean and re-decoration at our own house. Why is it so much easier when you are doing it for some else?

Having been away for the best part of a week, it will take us a few days to catch up on post, e-mails and social networking. Apologies if you have been in touch recently - we will get back to you sooner or later. Promise :-)

Since my last post, Steve passed the marker of 2 years and 7 months since he was diagnosed with mesothelioma on 16 June 2009. I'm delighted to say that life goes on as "normal". Great for us, but a bit boring for you I imagine. I will continue to post, but just a brief weekly update for the time being unless life becomes extraordinary, for one reason or another.

In the meantime, we are thinking of all the other meso warriors out there who are living through more "interesting times"....Stay positive and focussed, our precious friends. We are traveling this journey together.

just getting on with it....the joy of a "normal" week

2012-01-13T20:01:00.000Z

This week we have been getting on with things...

....Steve has picked up his new specs (jolly good they look too)

....I have been blood-doning (my small bit to help someone else)

....we have sorted out travel arrangements for trips in February and March (more things to look forward to..)

....the social calender is filling up quickly (seeing friends always lifts our spirits)

....my tax return has been filed online (hurrah!) and Steve is working on his (nearly there)

.... I've been doing some photo processing (at long last)

Just a "normal" week, except for little reminders - like having to check whether Steve's Industrial Injury Benefit and Disability Living Allowance are taxable - that life will never be quite normal again....

While we have been getting on with it, as usual we have also been following the fortunes of other meso bloggers, and....

.....thinking of Mavis (and Ray, and Louis the dog) as Mavis starts more chemo, and hoping that it will knock her "Mr Nasty" back for a lot longer

.....thinking of Jan, and hoping that the heaviness in her chest is "just" an infection, rather than the meso growing on the membrane around her heart

....thinking of Amanda and Ray and hoping for good news after Ray's PET scan at the end of the month

....celebrating with Tess, whose condition is still stable after two cycles on a drug trial - and long may it continue!

....thinking of Debbie, who always manages to pack SO much into her life, and hoping that all goes well on her chemo journey which starts next month

We didn't know any of these people when I started writing the blog, and we've still only met a couple of them face-to-face since. However, our lives are now bound together by the threads of mesothelioma. What touches them, touches us. And I know it works the other way round too.

At times I wonder if it's worth writing anything on the blog at the end of a week like this. However, just being able to say that we have been getting on with things in a "normal" week is likely to be a comfort to someone out there with mesothelioma going through a bad time and wondering whether they will ever have a "normal" week again. Take heart - you will!

The twelfth day of Christmas

2012-01-06T18:57:00.001Z

There's a stretch of the M4 motorway which we jokingly refer to as the "black hole." There are many miles between junctions through scenery that seems to change little, if at all - it's a bit like driving on a treadmill. We tend to glaze over, go on to auto-drive and occasionally ask each other "where the hell are we?"

The period from the twelfth day of Christmas leading up to Steve's birthday in early March feels a bit like the M4 black hole. Other than the bright spark of Valentines Day, we usually have our heads down and grind through the long hours of darkness, gloomy weather, winter coughs and colds, while waiting for spring to arrive. However, time is too precious to waste when you know it's likely to run out sooner than expected, so this year we are going to try to do better!

Although we can't influence the weather or change the hours of sunrise and sunset, we can use of the next month or two to continue sorting out the house, now denuded of Christmas decorations; be sociable - a visit to, or from, friends always lifts the spirit; get well organised for our treat week away in February; make some progress on photography which has rather fallen by the wayside over the last few weeks and make the most of any clear, cold crisp days to get out and about while the light is good. Well, that's the plan anyway!

When you get yourself into a positive frame of mind, you begin to see little things which make you happy which you might otherwise miss. In my case, I noticed today that there are buds on the clematis Armandii which look like they will be opening soon, studding the dark green leaves with small white stars all over the back of the house. The birds are singly loudly, beginning to claim territory for nesting - always a good sign! The people who recently moved into the house next-door-but-one to us have invited all the neighbours to tea and biscuits on Sunday afternoon - how kind is that?

Steve is making good progress clearing his work room, sorting out papers and getting everything ready to do his accounts. He also had his eye test this morning and ordered some new specs - very cool :-) I've completed my "dossier" of exhibition acceptances in support of my AFIAP (Artiste Federation de l'Art Photographique) application, which is another small step forward on that front.

For a change, we're looking forward to the time after the Twelve Days of Christmas; not a black hole but a bright tunnel into spring. Steve's next assessment isn't until mid-March, so plenty of time to do something positive!

Looking forward to 2012

2012-01-01T18:01:00.000Z

We kicked off the New Year by dancing until 4 am. Not surprisingly, the rest of the day has been very quiet as we recover......

There is much to look forward to in the coming year - our first visit to Rome in February and Steve's birthday in March, both before the next hospital assessment.
In 2012, I am going to try very hard not to get so stressed in the run up to these appointments, like I did last year. When time is precious, it's stupid to get so hung up about the possibility of bad news in the future that it spoils the present.

As long as Steve feels well, I think we may well look a little bit further beyond the three month time horizons that we have allowed to restrict our plans over the last two and a half years. If nothing else, we need to give some thought about how to celebrate our 40th wedding anniversary in May!

Whatever 2012 brings, I know that we will not be facing it alone. Support from our family and friends is priceless and we treasure it accordingly. Thank you all so much. We look forward to seeing many of you in the coming months. Time to get the calender out and pencil in some dates!

Looking back on 2011

2011-12-31T13:03:00.000Z

Our plan to have a grown-up intermittent "gap year" traveling when both children left home ended abruptly when Steve was diagnosed with mesothelioma in June 2009 and our lives were turned upside down. However, in 2011 we have been fortunate to be able to pick up where we left off two years ago.

There have been several trips to europe, including Venice, Bilbao, Paris and a tour of south west France. We've travelled extensively in the UK often meeting up with family and friends, including trips to Edinburgh, Bristol, Bath, Bury St Edmunds, Manchester and London, and short breaks in the Cotswolds, the Peak District, Yorkshire and around the Devon/Cornwall borders.

We've packed in experiences which are new to one or both of us - hot air ballooning; clay pigeon shooting; skimming the waves in a RIB (rigid inflatable boat); a day at the Derby, Epsom; a production at Stratford and visiting sites and buildings not normally open to the public when opportunities have arisen.

We were delighted to become Associates of the Royal Photographic Society; have our photography selected for exhibitions in the UK, France, Holland, Serbia, Bosnia and Herzegovina; featured on photography websites and published in magazines, picking up a few awards along the way.

However, it doesn't get any easier, living on the emotional roller coaster of three-monthly hospital visits, never knowing what news the next assessment will bring. The deaths of several friends this year has reminded us how precious life is and how important it is to make the most of the good times.

We have been fortunate to be able to do that over the last 12 months, as each assessment has brought the good news that there is no significant change in Steve's condition, some two and a half years post-diagnosis. Although others have been less fortunate, the courage and determination shown by other meso-warriors when faced with less good news remains inspirational.

While a cure for mesothelioma still seems some way off, there are several promising lines of research targeting the mechanisms of cancer cell growth and ways to harness the body's own immune system to destroy cancer cells. Who knows what will happen in the next 12 months?

Tomorrow it will be time to look forward.

We wish you and your loved ones a happy, healthy and fulfilling New Year :-)

Flames of Hope and Courage

2011-12-28T17:21:00.000Z

The Asbestos Disease Awareness Organization (ADAO) invites you to be part of the “Light a Candle” community.

As we honor our loved ones fighting asbestos-related diseases or in loving memory of those who have lost their courageous battles, there are few symbols that offer more comfort than a candle blazing in the dark.

We invite you to light a candle and reflect, remember, and renew your inner strength. We cannot ignore our pain and grief, but we can find comfort in our memories and love. The message you write after you light your candle may serve as a beacon of hope and inspiration to someone in your shoes halfway around the globe. Your candle will remain lit for 48 hours, so please light a candle today and feel free to return to light other candles of hope and courage….Just follow the Light a Candle link on the right under "Show your support"

On December 28th, light four candles, in loving memory of our Mesothelioma Warriors who have lost their courageous battle. “As we light these four candles in honor of you, we light one for our grief, one for our courage, one for our memories, and one for our love.”

LIGHT THE FIRST CANDLE: ‘The light of this first candle represents our grief. The pain of losing you is intense. It reminds us of the depth of our love for you.”

LIGHT THE SECOND CANDLE: “The light of this second candle represents the courage it takes to confront our sorrow, to comfort each other, to change our lives.”

LIGHT THE THIRD CANDLE: “This third candle is a light to all of our memories of you. To the times we laughed, the times we cried, the times we were angry with each other, the silly things you did, the caring and the joy you gave us.”

LIGHT THE FOURTH CANDLE: “This fourth candle is the light of our love. As we go forward, day by day we cherish the special place in our hearts that will always be reserved for you. We thank you for the gift your life brought to each of us. We love you always.”

Thank you for your support.

a family Christmas

2011-12-28T17:03:00.000Z

It started with just two of us, dressing the tree, decorating the house and wrapping presents to get ready for Steve's third Christmas since diagnosis. On Friday evening we were joined by our son, Jack, and then we were three.

After some last minute shopping on the morning of Christmas Eve, we spent the afternoon with our dear friends, Jonathan, Sally and Gabby, where we toasted the festive season with Prosecco, were tempted by delicious nibbles, caught up on each other's news and exchanged presents - the perfect start to the holiday weekend! We collected our daughter Katie from the station on the way back and then we were four for the Christmas Eve meal at home.

Christmas Day was relaxed - opening our "stockings' before a late breakfast (that nice Father Christmas remembered the grown-ups again this year to our delight!) followed by the presents under the tree later.

The rest of the day seemed to revolve around preparing, eating and clearing away after the main meal....

....After a lazy Christmas Day, we were eager for some fresh air. Steve, Katie and I went out for a walk late in the morning on Boxing Day to blow the cobwebs away. Later that day, we were joined by Katie's boyfriend Ed so there were five of us sitting down to the Boxing Day meal that evening....

The house seems very quiet now by comparison!

Katie and Ed left yesterday afternoon, heading north. Steve, Jack and I went to see Grimm and Grimmer at the theatre last night - a wonderful combination of slapstick, fantasy, magic and audience participation! Jack returned to Bristol this morning and, once again, we are temporarily back to just the two of us with a little bit of time to catch up on the blog, read about what other people have been up to, make arrangements to see other friends in the coming days and reflect on how fortunate we have been to enjoy another family Christmas together!

At the back of our minds lurk thoughts about what next Christmas will bring, but such thoughts will stay at the back of our minds I hope, while we get on and enjoy the here and now and make the most of life before Steve's next assessment - and maybe even allow ourselves to look a little further ahead in 2012? As Jack pointed out, no one knows for sure what the future holds. However, that doesn't stop most people thinking about and making plans to do things beyond the next three months. As the New Year approaches, perhaps we should look a little beyond the self-imposed time horizons of the quarterly hospital assessments when we think about 2012 and what we hope to do in the spring and summer.....

Wherever you are and whatever you are doing, we hope you are having a wonderful festive season! Stay positive :-)

The Christmas get together

2011-12-20T17:43:00.005Z

Although Steve was born in Bristol, the Wride family moved around a lot as he was growing up. When his parents decided to move back to Bristol in 1981, it was a bit like a home-coming. Since then we have had a big family get together in Bristol at some point during the year.

In the spring of 1981, there were eight of us and a ninth on the way. Here we are, three generations grouped together for a special occasion.

Spring Bank Holiday 1981

Over the succeeding years, the numbers and participants at the get together have varied, with one death (Steve's dad from mesothelioma nearly 20 years ago now); some changes in partners and new babies.

By 2008, we numbered thirteen over four generations. We had no idea that back then that Steve would be diagnosed with mesothelioma six months later.

Christmas 2008

This year we celebrated Steve's third Christmas since diagnosis. The family gathering in Bristol was on Sunday and we were able to enjoy the festivities knowing that his condition is still stable - the best Christmas present we could have wished for.

We have been fortunate again this year. Today's blog is dedicated to all those families less fortunate than ourselves.

Two and a half years on and we're still celebrating.....

2011-12-16T23:38:00.000Z

It's two and a half years since Steve was diagnosed with mesothelioma and if you read yesterday's blog you will understand why we are still celebrating.....

.....Normal service will be resumed shortly :-)

Christmas comes early!

2011-12-15T11:23:00.000Z

I won't beat about the bush - just want to share the good news....No sign of any change in Steve's condition; disease still stable! Next hospital visit not until mid-March, unless there are any problems in the meantime.

Christmas has come early in the Wride household and we've had the best present we could have hoped for. There will be celebrations here tonight!

Countdown: 1

2011-12-14T23:14:00.003Z

After getting well and truly wound up about Steve's assessment this time round, support from friends and the Meso Warriors things have helped get things back on a more even keel today. In fact, it's been like the lull before the storm (apart from the foul weather...)

We kept calm and carried on - food shopping; present buying, wrapping and posting; menu sorted for the family festive get together in Bristol; tightening up the kitchen tap which was beginning to work itself loose....just another day, really - but ticking off more things on the "to do" list. We even spotted some Red Kites flying low over our part of Oxford on the way to the supermarket - a wonderful sight. Let's hope they will visit more often!

Early start tomorrow, to beat the rush for X-rays then on to the Oncology Day Centre. By the time we have walked between the departments and Steve has checked in and been weighed, Dr T will be looking at the X-ray and comparing it to the one from three months ago and the one taken back in 2009 to assess what's been happening inside. And then we'll be called in to hear the news.

I'll let you know the outcome tomorrow.

Countdown: 2

2011-12-13T19:27:00.001Z

I am a wuss. I've been getting more and more stressed as the week goes on, worrying about something that hasn't happened yet. Then I look at other Meso Warriors' blogs and I feel such an idiot.

I see Mavis and Ray getting on with life and having fun, even though Mavis is due to start chemo in the New Year. Jan is saying how lucky she is still to be at her desk, some 12 years after being literally struck down by the first symptoms of mesothelioma. Debbie is out and about, as always, even though she has to decide whether to go on chemotherapy depending on the results of her next scan in February. Amanda and Ray are looking forward to a drug-free Christmas, after beating pneumonia (not the best illness to come down with when you have meso!) Tess has been hitting her "Targets" with a great weekend away in London and a shopping trip to France, even after three cycles on a drug trial and one cycle of chemotherapy.

Then I look back at the blog and remind myself that life went on through Steve's first chemotherapy treatment and we still enjoyed ourselves. We just learned how to live with it and adapt. If the news is not good on Thursday, the world won't end. If treatment is necessary, I doubt very much whether it will start before Christmas and even if it does, we can work round it.

I am going to stop feeling sorry for myself and just get on with it. Do something positive woman, instead of getting wound up!

Countdown: 4.....3.......

2011-12-12T13:31:00.000Z

Sunday morning saw us folding and writing more Christmas cards, ready for posting today and sorting out some more presents online. Sunday afternoon, I returned to photography to take my mind of the forthcoming hospital assessment and spent a couple of hours finding out about photo books and how to produce them (another creative form of distraction for future reference!)

Today, it's back to Christmas preparations - putting together little gifts for our friends, ready to post in town later on....

I must confess, there are times I think I'm cracking on and making progress, then realize I've been on auto-pilot and really my mind is preparing for the news at the hospital on Thursday and rehearsing how to respond to different scenarios. Steve says he's little less stressed than me, but when he absent-mindedly cleaned his teeth with stuff from the soap dispenser rather than toothpaste last night, I begin to wonder whether that's the case. Or perhaps he's just having a senior moment!

There's still the tree to bring inside and dress, the house to decorate, the Christmas menu to plan, along with food for the family get together next weekend, so plenty to keep us occupied, not forgetting those last few presents.....Why do we always leave the difficult ones until last?

Countdown: 5

2011-12-10T20:28:00.000Z

If you have dropped by the blog for the first time in a week or two, you may think I've gone into a parallel universe where Christmas is coming in five days time. In fact the countdown relates to Steve's next hospital assessment on 15 December and what we have been doing to distract ourselves and avoid getting too stressed about what will happen next Thursday.

In some ways it helps that Christmas is just around the corner - lots to keep us occupied. Today we have been printing and writing Christmas cards, and managed to post the first batch to friends in the UK. Still lots to do, but at least it's a step in the right direction....I also enjoyed meeting up for a festive lunch with friends that I used to work with at the City Council, some 10 years ago - lovely to see you all and catch up with your news!

In other ways, it brings home to me that another year has passed since Steve was diagnosed with mesothelioma and I find myself wondering how much longer will Steve's stable condition continue? Such thoughts are not conducive to the festive spirit, so I try to put them out of my mind and focus on the positive even though it can be hard at times. Need more distractions!

Countdown: 6

2011-12-09T23:20:00.000Z

With six days to go to Steve's next hospital assessment, retail therapy really came into its own today as a way of distracting ourselves from the stress of waiting to know what's going on inside his body. And it help us make a big step forward on the festive preparations.

We found the perfect presents for some of the family as well some little somethings for a number of friends. As a result, we are feeling rather pleased with ourselves even though there's still a long way to go before we can relax, knowing that everything is under control. Is it ever?

The Christmas wreath went on the front door this evening to welcome visitors over the festive season. More cards have been printed and, with a bit of luck, some might be written tomorrow morning in time to catch the lunchtime post.

The mantlepiece is now full of cards and we have enjoyed reading the first few letters to arrive and catching up with friend's news from the last 12 months. What will tomorrow's post bring, I wonder?

Countdown 7

2011-12-08T23:04:00.000Z

This time next week, we will know the outcome of Steve's next hospital assessment, so we will either be celebrating or gearing ourselves up for more treatment. To take our minds off things today, we tried a bit of retail therapy. Well, the weekly food shop to be precise and an unsuccessful present shopping trip, so more stress than therapy as it turned out.

However, we did manage to print Christmas cards and letters this afternoon. Maybe by the end of tomorrow we will have written and posted all the cards to our friends in the UK and moved a step further forward on festive preparations...

Countdown 8

2011-12-07T22:57:00.000Z

The continuing story of the kitchen sink drama has provided today's distraction from Steve's impending hospital assessment in eight days time. But I pleased to report that after a hiccup this morning, it's all up and running smoothly now. Just the aftermath to clear up.

We've even managed to fit in printing some more Christmas cards, so...progress on the festive front!

What will we do tomorrow to avoid getting stressed about Steve's assessment on 15 December?

Countdown 9

2011-12-06T19:11:00.001Z

To distract himself from getting stressed about his next hospital assessment in nine days time, Steve spent most of the day in the kitchen. Not cooking you understand, but with the upper half of his body inside the cupboard under the sink and the lower half spread eagled over the floor, with tools spread out all round him. It's not a new version of hide and seek. He's been busy replacing the old kitchen tap with a snazzy new one, so we can play with the spray attachment!

It has taken most of the day to install the new tap, with a break part way through to go and buy a new tool to help him tighten up the fittings under the sink which are otherwise almost inaccessible. But he's just about home (and dry, I think) at last. We now have water again in the kitchen, but re-fitting the waste pipes will have to wait until tomorrow, so nothing must go down the sink in the meantime. I wonder which will be the first of us to forget......

Apart from playing the role of plumber's mate (which can be quite stressful!) I distracted myself by catching up with photo processing, looking at the photography websites I try to visit regularly and going through my e-mails. With the benefit of hindsight, what I really should have done is print and write Christmas cards and come up with brilliant ideas for presents. Ah well, that will have to wait for tomorrow I think (always assuming re-fitting the kitchen waste pipes doesn't take over our time!) At least we are making more progress on the home front....

Countdown - 10

2011-12-05T19:00:00.000Z

It's 10 days to go until Steve's next hospital assessment. We are in countdown mode, trying to keep ourselves busy and not get too stressed about what we might hear on 15 December. So far, it seems to be working....

After a bit of discussion, arrangements are in place for the Wride family festive gathering before Christmas. Today we posted our Christmas cards and letters to friends living abroad and bought the stamps ready to post the UK cards (yet to be printed, let alone written). Steve has made a wreath for the front door and more cards have arrived for us, so the house is beginning to look festive.

The Christmas decorations have been retrieved from their storage space under the loft eaves (an operation which involves crawling into a very tight space with a torch, so not something I look forward to!). There is a fir tree sitting in the back garden, waiting for when the time feels right to bring it inside and dress it up for the festive season, which we usually do a week or so before Christmas.

The big clear out continues, with yet another trip to the recycling centre - will it never end? Still bit by bit, we are creating more space and getting a bit better organized in the process.

OPS studio session

In all this turmoil, photography has taken a back seat these last few weeks. However, I enjoyed trying my hand at studio work for a few hours on Sunday with a lighting and background rig set up in a local hall by one of Oxford Photographic Society members, who was on hand to initiate studio novices into the world of triggers, soft boxes, ring flash, reflectors, diffusers, gels...

And there have been more images accepted in international salons in the UK and France, so I'm a happy bunny.

OPS studio session

How shall we distract ourselves tomorrow, I wonder?

Recipes for an unsilent night and a chatty day

2011-12-04T18:58:00.001Z

Recipe for an Unsilent Night

Ingredients:

100 + strangers with ghetto blasters, i-pads, laptops, mobile phones, MP3 players and such like, each device loaded with one of four randomly assigned threads which bind together to form one unique piece of music

Instructions:

Assemble together on a specified night in a dark corner of Radcliffe Square and countdown to a synchronized press of the "Play" button
As the music develops, lead the group out of the darkness into the light and wind them through the heart of Oxford, under the Bridge of Sighs, between the high walls of Queens Lane, along the cobblestones of Merton Street and back to Radcliffe Square, stopping the traffic on the High to let them cross safely, the tunes weaving in and out of each other as people pass by or move around within the group
Contrast the quiet Brasenose Lane with the hustle and bustle of Cornmarket and Queen Streets, where people with no idea what's going on, watch and listen in amazement as the beautiful sounds pass by
Let everyone gather together for a brief moment in the subway so that the music echoes amplified, then lead them on out into Castle Street, past the Christmas market and into the Castle courtyard
Simmer gently for the last few minutes as the music reaches a crescendo with everyone gathered together around the Christmas tree, then
Strain your ears to hear the last audible note as, one by one, the sounds die away to nothing and the night is silent once more

Cooking time and Temperature:

About 45 minutes, in the cold

Results:

enchanting, spell-binding, spine-chilling magic music (and a bit of exercise by night!)

Notes:

Unsilent Night started about 20 years ago in New York
The first public performance of Unsilent Night II in the UK took place in Oxford on Friday 2 December and it will visit other UK venues over the next year or so
if you get the chance to take part DO IT!

Recipe for a chatty day

Ingredients:

Four generations of one family
Christmas shoppers at Ikea

Instructions:

Place Steve and myself in a car and send us on our way to Bristol, chatting about what we hope to do during the day
After about an hour, add one son into the mix, start talking and stir gently while the rest of the ingredients are prepared
Fill one Ikea store with thousands of noisy Christmas shoppers
Add Steve and myself plus shopping list and heat for an hour or so until wilting gently, chatting all the time about whether this will fit in the workroom, whether to buy white or red candles, which of the seemingly endless queues to join when all the items on the shopping list are ticked off
Return to son to rest for a short while
When refreshed, set off for aging parent
Simmer gently for a few hours, occasionally turning up the volume when the hearing aid fails to do its job
Lubricate with cups of tea and add cake as necessary
After a few hours, bid fond farewell to aging parent and dip into the home of nephew, partner and toddler daughter
Sprinkle the lively conversation with delightful giggles until ready to spoon back into car and head back in the direction of Oxford, radio on to keep stimulated until thoroughly cooked
Remove carefully from car once back at home, unpack the shopping and collapse on the sofa with a bottle of wine until ready to consume evening meal

Results:

A very chatty day, with lots to discuss and ideas to follow up

Cooking time and temperature:

About nine hours over a slow heat, with occasional grilling

Notes

Not enough hours in the day to say/do everything
Pick up again in two weeks time when we all meet for the Wride family Christmas get-together

Progress and a retrospective

2011-12-02T16:58:00.002Z

At last - progress on our festive preparations!

Steve has designed this year's Christmas card and we have printed the first batch, ready to send overseas just in time for next week's postal deadlines.

I have written the annual news letter to send to friends we don't see that often. Looking back at the blog, we seem to have crammed in an amazing amount this year especially since I finished work at the end of March - new places; new experiences; favourite haunts revisited; old friends reunited; new friends made - especially in the cyber world; enjoying life to the full together, while we can.

Looking back at the blog also brought home to me how fortunate we have been. Too many have succumbed to mesothelioma this last year after putting up brave battles over a prolonged period; others fight on with determination in the face of disease progression. Not forgetting that behind every meso warrior are families and friends whose lives are also affected by this disease.... We have also lost a close friend this year, unrelated to mesothelioma. No one can take life for granted. Perhaps that's the underlying reason we have been cramming it all in!

The festive season is now in full swing. In Oxford where we live, this evening is "Christmas Light Night". A lantern procession will wind its way through town; there is live music and entertainment on stage in St Giles to celebrate the Christmas lights being switched on, and a big screen will be set up outdoors at Gloucester Green showing locally made films. Many of the City's venues and institutions are opening late with special events and activities, many by candle light. One of the Light Night highlights will be "Unsilent Night" - a promenade through the City streets, with people carrying ghetto blasters, CD, cassette and MP3 players, all playing in unison the same "sound sculpture" of shimmering bells, chimes and grand chorales - the composer's words, not mine. Sounds amazing!

We thought we would miss the event this year, but plans have changed at the last minute and, who knows, we might make it after all. It looks like it could be quite an evening, one way or another!

And so it begins.....

2011-12-01T23:21:00.000Z

The Advent Christmas tree is on the mantlepiece in the front room, with a chocolate tucked away in every little drawer (apart from No 1 which has already been consumed).

The first Christmas card sits next to it, sent from Meso Warrior Mavis who will be having chemo over the festive season.

And so it begins, the season of festivities...We really do need to get ourselves sorted out!

The first good news of December is that over £2,496 has been donated in memory of Ronny (Veronica White). She would have been delighted!

a day London and our first Christmas card

2011-11-30T16:37:00.001Z

As we have been working hard on home-front, yesterday we treated ourselves to a day out in London on the back of our first ever meeting with a financial advisor. The time has come to get our "family affairs" as well as our house in order - it's many years since we wrote our wills, much has happened since and a review is long overdue.

Business sorted, we headed off for the National Portrait Gallery to see the Taylor Wessing Photographic Portrait Exhibition. Neither of us take many people pictures, but the work on show has inspired both of us to have a go and maybe submit work next year. If there is anyone out there who would like to volunteer as a model, just get in touch. The more interesting your face, the better!

A day out in London is always very tiring, but we made time to check e-mails before going to bed as we have been following the progress of Mavis, one on the Facebook "Meso Warriors," who has been on a drug trial since her tumours started growing again aggressively. Sadly, Mavis found out yesterday that the drug trial hasn't stopped disease progression, so she's off the trial. However, the good news is that she has been offered second-line chemo with pemetrexed (Alimta) which has proved to be beneficial when the cancer returns after first line treatment. Stay positive, Mavis. You've done it before. You can do it again!

Having gone to sleep thinking about Mavis last night, what should arrive today? Our first Christmas card from - you guessed it - Mavis and her husband Ray. They put us to shame. We haven't printed our cards yet, let alone started writing them. Time to make some progress on that front!

Before posting today's blog, I've been waiting to hear the results of Debbie Brewer's scan, which have just gone public. There is slight growth in Debbie's right lung, but otherwise her condition is stable, which is good news with such a potentially aggressive cancer. Debbie has been offered Alimta to keep Theo the Meso under control, but doesn't have to make a decision until February. She's asked the Meso Warriors what they think. On balance, the response so far has been positive.

Steve considers Alimta as his fall back option, should his disease flare up at a time when there are no suitable drug trials on offer. However, we were encouraged recently by a report in the local media on the success of a technique being pioneered at our local Cancer Centre. "Microwave tissue ablation" involves heating the tumour from the inside with microwaves, which kill cancerous tissue. So far it has been used successfully to deal with liver, kidney and bone cancer as well as lung tumours. May be it will work with mesothelioma? We'll ask about it at Steve's next assessment in a few weeks time. Watch this space!

and a step forward!

2011-11-28T18:03:00.003Z

After the hiccups of last week, Steve is on a roll! Not only is the new bathroom light still firmly holding on to the ceiling, he's also managed to sort out the light fixture in the hall so everywhere looks and feels much brighter.

The big clear out continues. More paperwork has been consigned to the recycling bin, including information about mesothelioma printed off in 2002. I did a double take when I saw that, as Steve wasn't diagnosed until 2009. Then I remembered that at the time his father died of mesothelioma, the legal advice was not to pursue a claim for compensation as the Bristol shipyard where he had been exposed to asbestos had long since closed and it was unlikely that the company's insurers could be traced. I think there must have been a legal ruling around 2002 which made us look again at a possible compensation claim. However, the paperwork was daunting and we didn't want to upset Steve's mum by asking her to remember painful details. The forms and leaflets were put to one side and forgotten until almost a decade later. At least our children won't have the dilemma we faced.

Having cleared more bits and pieces from the loft, we have been able to reorganize the room so it can function a bit better as a guest bedroom as well as being my computer workstation and the home "office". Even the all-singing-all-dancing printer/scanner/copier is installed and talking to both computers, so that's one of last week's targets hit! Just have to sort out the kitchen sink now......Not looking forward to that job. I think we'll have a day out instead ;-)

What we really ought to be doing is preparing for Christmas. Some people have it all tied up by now. We have only just started. At least we'll be able to print the Christmas cards now - always a good start!

One step forwards and two steps back

2011-11-26T20:35:00.000Z

Back in the summer we bought some replacement fittings for the kitchen sink, including a snazzy new tap with a spray, and a printer/scanner/copier to replace the machine I returned to the office when I finished work at the end of March. The boxes have been sitting in their respective rooms for several months now, while we've been off enjoying ourselves. But the time has come to play with the new toys, so the target at the start of the week was to have both bits of kit up and running by today. But even the best laid plans go off course.......

.....Rather than start the week by messing around with the water supply, we decided to tackle the easiest job. However, before connecting up the new printer and making sure it could talk to the computers, I thought it would be a good idea to reorganise the loft to make better use of the space vacated by all the other work-related kit, documents and paperwork from my previous employment. That started the big shred and two trips to the recycling centre, with more to come.

....Then the light bulb in the bathroom which had been flickering for several weeks finally expired - or so I thought - just as we were going to bed. It was too late and dark to do anything about it that night, so we cleaned our teeth by torchlight for the first time. The next day when I undid the fitting to replace the bulb, the light came on again so Steve (resident electrician) tightened up the connections and put the fitting back on. That evening we noticed a strange smell in the bathroom; the light fitting had started to melt. Off with the light and out with the torch to clean our teeth on night 2. The following morning, Steve realized that had put the light fitting back together incorrectly, which is why it had overheated. So now we needed a replacement fitting, rather than a bulb.

By the end of the day, the old fitting had been removed and the holes in the ceiling filled. But rather than risk drilling into the filler before it had set thoroughly, we managed without the bathroom light and cleaned our teeth by torchlight for the third time.

The next morning we were out on a photowalk at the Rutherford Appleton Laboratory - a fascinating experience! We also felt pleased with ourselves by buying a new bathroom light fitting on the way home, ready to fix that afternoon. Then disaster struck. The holes to fix the lamp in place were just in the wrong place in the old lathe and plaster ceiling to get a good grip; the screw fixings were not strong enough to take the weight of the new fitting. We gave up, reconciled to cleaning our teeth by torchlight for the fourth night while we tried to figure out what to do.

A second set of drill holes and a good dollop of "No More Nails" later and the new fitting is up in place. We have light in the bathroom tonight!

However, we don't have the new printer up and running yet. The new kitchen tap is still in its box. We now have the aftermath of the bathroom light saga to sort out, as well as the remnants of the big loft clear out. Feels like we have moved one step forward and two steps back this week. Ah well, there's always next week.....I hope that replacing the kitchen tap goes a bit more smoothly!

At least it has provided a distraction from thinking about Steve's next assessment, now less than three weeks away. Just have to keep ourselves occupied.....

Torn to pieces

2011-11-21T18:37:00.001Z

Today we have been mainly shredding. Paper. Lots of it. So much paperwork, that the shredder keeps overheating and turning itself off. Such a long job and we are far from finished. Serves us right for waiting so long between de-clutters! On the other hand, we have other things on our minds for the last few years so perhaps we can be excused.

From time to time we looked at the old bank statements and other documents before they were torn to pieces. It's amazing how little information can trigger a memory....a bill for petrol from Blaenau Ffestiniog - that must have been our half term holiday in Wales; there goes Katie's child benefit (she's 22 now!)...why, of why, have we kept the instructions for the vacuum cleaner before last?

However, there are some things which are not destined for the shredder. The letters and photos from friends; notes from our meetings with doctors while Steve was having chemo; mementos of extra special events and occasions; the odd press cutting, award, certificate and medals which document some of our eclectic achievements from taking part in the Race for Life to designing the West Oxford poster; little notes from the (now grown-up) children. It's small things like this that put the flesh on the bones of our day-to-day lives. It will be up to Jack and Katie to decide the fate of such things. I can't bring myself to throw them away...

As we were going through these old documents from the 1990s onwards, it struck me that even back then, the asbestos fibres which caused Steve's mesothelioma were lurking somewhere in his chest, biding their time while the years of latency ticked away - just waiting for the trigger mechanism to kick in and tear our lives to pieces, just as we were now shredding bits of paper.

How many others are there out there now with the same shock in store for them in 30-40 years time? Would we have lead our lives differently if we had known back then about the time bomb waiting to go off inside Steve's body? Questions you simply can't answer.

So it's back to the here and now. The shredder has had a rest and so have we. Time to to a bit more - enough to clear the dining table at least. Who knows what other gems there are waiting to be re-discovered as we carry on with the big clear out?

Oh yes....and what do you do with with a small collections of French francs, Greek drachma, Spanish pesetas, a legacy of pre-Euro times. I don't suppose there a charity which recycles old money?

In Steve's own words: It's good to talk (and listen)

2011-11-20T18:30:00.000Z

It's my turn to blog again, and as the title says, it's good to talk. That's what I did on Saturday, talked and listened.

Firstly, mostly listened as we toured the Diamond Light synchotron (Google it) at the Appleton Rutherford Laboratory, and as two children of scientists at the facility demonstrated super-conductors (for pocket money!), and as three proud metal workers in our tour group pointed out the parts of the equipment they had made.

Then talked and listened as we met neighbours in the street, one who we hadn't seen for months (we've been away a lot!), on the way to toast Charlie and Kerri, who had just got married. We talked and listened to them and their tales of near disaster averted with water systems and electricity supplies failing on their honeymoon narrowboat, we are so glad we could offer them our house as a bolt hole, even though we couldn't be there to help and be at the synchotron at the same time (they haven't perfected that experiment yet). And we talked and listened to Charlie's mum Jan and sister Susie.

Then off to listen to Charlie's band in the evening (no, not that Charlie, another one), with more talking to people we hadn't met in ages, one for 20-odd years. Next time we'll get there earlier (sorry Charlie, Dave and crew for crashing in just as you wanted to start your set) and talk to more of you.

A lot of talking and listening and I feel privileged and extremely lucky to be part of all that two and a half years after diagnosis, most don't get that chance. So thanks everybody for talking (and listening) to me, I'll talk to you again in a hundred posts time.

Two years and five months.......

2011-11-16T20:02:00.000Z

It's two years and five months to the day since Steve was diagnosed with mesothelioma...... and he's still here.......still going strong.......still enjoying life

Rather than me write at length today about how he feels, I have asked Steve to post tomorrow's blog, which is number 300.

Watch this space!

Bonjour - we are back from Paris!

2011-11-15T17:50:00.000Z

Last year, I was given Eurostar vouchers for Christmas by our children, but life has been so full in 2011 that we didn't have the opportunity to use them until last week, when we hopped on the train in London and got off in Paris!

Our culture fix for the week was to see three exhibitions: Diane Arbus (American photographer) at the Jeu de Paume; Cezanne in Paris at the Musee de Luxembourg and Des jouets et des hommes (Toys and men) at the Grand Palais - great fun for both little and grown-up children!

We also caught up on the photography front with a visit to Évry cathedral - an amazing building out in the Paris suburbs, constructed in beautifully crafted brickwork, with trees growing on top - and two return visits to La Defense and the area around the Grande Arche, to photograph the skyscrapers, public art and views along the esplanade to Concorde and the Arc de Triomphe.

My quest to photograph more public art lead us on a meandering route through central Paris, around Les Halles; the Louvre courtyard with its wonderful glazed pyramids above and people watching opportunities below ground; past Notre Dame and along the Seine to the Institute du Monde Arabe, where we enjoyed the views from the roof terrace, before walking on to Bastille.

On our last morning, we said hello to the French version of the Statue of Liberty then walked on to Parc Andre Citroen, which now occupies the site of the former Citoen car factory. Sadly all the water features had been turned off for winter. However, the helium balloon was still going up to give visitors a bird's eye view of western Paris and two firefighters surprised onlookers by practicing their balancing skills at the top of the extended ladder high up above the Seine.

In the course of these excursions, we caught a glimpse of President Sarkozy pressing the flesh after the Armistice Day Service on 11 November, enjoyed window shopping everywhere along our routes, from swanky shops, to small patisseries in back streets and the booksellers along the river. We walked what felt like many miles, as well as hopping on and off the metro and traveling on the two storey RER train out of town. Exhausting but exhilarating!

After a quick turnaround at home on Saturday night/Sunday morning, I was off again on Sunday afternoon, this time on a flight to Guernsey for a business meeting, returning last night.

Having been away from base for three out of the last four weeks, we are both looking forward to a relatively settled period to catch up. That's the last of the trips abroad planned for 2011, although there is plenty to do at home to keep us occupied in the run up to the Christmas festivities.

In the next month, as Steve's assessment looms closer and closer, I must try not to get too stressed about what the X-ray will show. As usual, Steve appears to be more relaxed.....although I think that the recent deaths of Ronny and Anita, two meso warriors whose stories we have followed, has shaken both of us, perhaps more than we like to admit. Life is precious. Enjoy it while you can.

For Anita, with love

2011-11-15T15:19:00.000Z

On 25 October 2010, just over a year ago, I came across Anita Steiner's story and added a link to her blog under "We are not alone" on the right. Although on the other side of the world, we have been following Anita's story ever since, inspired by her positive attitude, determination to stay alive until a cure is found for mesothelioma and be there for her little girl, Emma, as she grows up.

Anita was talking to the Meso Warriors online only last week about starting a new chemotherapy drug. It therefore came as a great shock on return from our travels on Saturday night to read that Anita had died earlier that day, some four and a half years after being diagnosed with mesothelioma. Although our hearts are heavy with this sad news, those who followed Anita's story will always find inspiration from her words and positive outlook on life:

"I know at present Mesothelioma is classified as an incurable cancer. But I think, with the right mindset, there is no reason to believe that you can’t beat it. Yes, it doesn’t help if you have been diagnosed at a late stage of the cancer, having the right attitude doesn’t necessarily guarantee a good outcome, and there is no evidence that a positive attitude will slow the growth of cancer. But that is not what I am suggesting. What I am saying is that it is possible a cure is going to come along before the cancer gets you and by, keeping that in mind and having a positive attitude, it does equip you with the right frame of mind to want to fight it and win."

Anita Steiner
14 March 1962 - 12 November 2011

Thank you, Anita for your words of inspiration. We send our love to Emma, your family and friends.

Life goes on, with barely a pause for breath

2011-11-05T16:19:00.001Z

I have found it difficult to pick up again where I left the blog in mid-October, after the sad news of Ronny's death from mesothelioma. But life goes on and when you know things could change at any moment, it's a great incentive to get on and do as much as you can, while you can. And that's what we've been doing....

The fortnight of intense activity started with a quick hop across the channel to Guernsey, for my first visit to the Channel Islands and a short but enjoyable stay in St Peter Port.

St Peter Port Guernsey

After one night back at home, we were off again this time heading north to Manchester to help our daughter Katie move in to a new flat - an exhausting couple of days, shifting belongings, cleaning up the old flat, getting some furniture for the new apartment, and honing our flat-pack assembly skills. Steve enjoyed himself driving a big white hire van for a day around Manchester before we headed back to Oxford in the early hours of Saturday morning.

By Saturday evening we were in Bristol where we stayed overnight with our son, Jack, before heading off to Cornwall the next day to house sit for friends while they off touring. After a day relaxing to catch our breath, we made the most of being based on the Devon/Cornwall borders criss-crossing the border on the Tamar Bridge and the Torpoint Ferry (which confused the satnav....)

On the Torpoint Ferry

We visited quite a few National Trust properties (and tea rooms!) in the area before they were put to bed for winter, including Antony House; Buckland Abbey; Overbeck's (where Otto Overbeck the inventor of the "Rejuvenator" lived - pity it didn't work!); Coleton Fishacre (great Art Deco house) and Cotehele, where we did the tour in darkness, finding our way by torchlight - very CSI!

Antony House garden

Cotehele staircase

We walked around St Germans where we were based; joined the families having half term fun on the beach at North Sands, Salcombe and watched the sun go down over the sea from the top of Finnygook Cliffs.

Steve at Wacker Quay

Salcombe North Sands

We couldn't resist a trip on the steam railway between Kingswear and Paignton, especially the return trip in the Devon Belle Observation Car, with its huge windows and comfortable sofas.

The Devon Belle Observation Car

Boarding the stem train

We spent a day in Plymouth, visiting all five of the venues where work was on display as part of the British Art Show. Our favourite piece by a long way was Christian Marclay's film The Clock, showing in the old Slaughterhouse at the Royal William Yard, a former naval dock yard now being converted into shops, eateries, flats and a gallery. The Clock features thousands of film fragments of clocks, watches and characters reacting to a particular time of day, put together to create a 24 hour long video that works as a clock, synchronised with local time.

We put our heads into the screening room to see what was going on and were completely hooked. Not surprising perhaps, when making the most of our time together is number one priority!

One of the highlights of our week in the West Country was having lunch with Debbie, another meso warrior, who has been a great inspiration and source of support and practical help since Steve was diagnosed. Good to see you Debbie!

Thanks for the photo Debbie!

And thank you Chris and Glyn for the chance to house-sit for you. If by chance you read this, we hope you are having a wonderful trip :-)

We traveled home last Sunday via Bristol to visit Steve's mum, traveling on the M5 motorway which was the scene of a horrific road traffic accident yesterday. Living with a terminal illness is not easy, but knowing what's in store at least gives us the opportunity to make the most of life while we can. Those killed in yesterday's accident were not so fortunate. Our thoughts are with their families and friends.

This week at home has given us a pause for breath in an otherwise hectic schedule and a chance to tick off some of the mundane but necessary things that keeps life rolling along - eye test, contact lens ordered, flu jabs, boots re-healed; house work - before we go off again! It's also given us the chance to be sociable - a wonderful meal on Thursday, with our friends Elizabeth and Roger - and to celebrate some more good news on the photography front - a nomination in the 5th Annual Masters of Photography Cup and six more acceptances in international photography salons. All the comings and goings over the last few weeks has not left much time for photography, but we are hoping to make up for that next week........Drop by again soon to find out what we've been up to!

To any Fotoblur friends reading this post, the next thing on my "to do" list is vote for images for Issue 12 of the magazine - a big task but a very pleasurable one :-))

For Ronny

2011-11-03T16:33:00.005Z

In my last blog Crystal ball gazing, a conversation with a friend made me reflect on how quickly health can decline when mesothelioma is on the move. I was thinking in particular of Ronny (Veronica White) another meso warrior whose blog we follow regularly. Given a 4-8 month prognosis in July, she wrote in early October how she was not feeling any worse and was hoping that she may yet defy the odds. Those who followed the blog knew that Ronny was very poorly, but you could not help but think she might make it.

When I wrote about Ronny on 18 October, just before we set off on more adventures, I had no way of knowing that she would die later that day. We heard the news some time later, with heavy hearts. We did not know Ronny in person, just through reading her words, but we were nevertheless inspired by her bravery and determination, and the hope and support she offered to others by sharing her story.

Before she died, Ronny asked her daughter Emily to write the blog so that everyone would know the last page in her journey. How typical of Ronny to think of others, rather than herself. If you haven't read it already, I urge you to read it now (link on the right under We are not alone).

Ronny's funeral took place earlier today. I am sure that tears were shed by many from all over the world who had followed and were touched by Ronny's story.

The family have set up a Just Giving page for donations to the Heart of Kent hospice, in her memory: http://www.justgiving.com/Veronica-Ronny-White.

Not surprisingly, the target has been well exceeded.

We will all miss you Ronny, such a very special lady.

Image from Debbie's blog Mesothelioma and Me

Crystal ball gazing

2011-10-18T10:46:00.000+01:00

Yesterday evening, we had an unexpected phone call from an old friend from our student days who shares our passion for photography, as we discovered when we met up with him and his wife last year when they visited Oxford.

He had phoned to invite us to give a talk about architectural photography at his local camera club. When asked when this was likely to be, I was rather taken aback by the answer - June or July 2012. I had to explain gently that even though Steve's condition was still stable at his assessment in September, we had no way of knowing how things would be in eight or nine months time. We simply can't make firm commitments that far ahead in the future, and we would hate to let them down if we couldn't make it because Steve's health had deteriorated.

The conversation made me think. Even though I have written many times in the blog that we plan our lives around Steve's three monthly hospital assessments, it seems that not everyone fully appreciates the reason why - which perhaps is not surprising, if you have no personal experience of this disease. Although it has a very long latency period (20-40 years) mesothelioma is usually a very aggressive cancer. By the time symptoms of the disease are bad enough to see a doctor and a diagnosis confirmed, disease progression can be rapid. We try not to think about this, especially as Steve is asymptomatic at the moment. However, there are times when we have to face the demon.

This has been brought home to me recently with the rapid deterioration in the health of one of our meso warrior friends, Ronny. In late July, Ronny was told by her oncologist that she was in a "dangerous phase", a euphemism for final stage, with just 4-8 months to live. Determined not to give up, she went to Germany in early August for treatment with Prof Vogl, then started chemo in mid-August. A fortnight ago, Ronny wrote in her blog that two months into her 4-8 months prognosis, she didn't feel any worse. She hoped the goal posts might have changed a bit and that she may yet defy the odds. Then silence. Last Sunday we heard that she was feeling very poorly after the third cycle of chemo and was not eating. Yesterday, her daughter wrote that things have deteriorated and Ronny is now being looked after (very well) in the hospice. Our thoughts are with Ronny and her family.

Only last week, I wrote about breaking the self-imposed rule about not making firm plans beyond Steve's next hospital assessment. Ronny's experience is a timely reminder about why we have adopted this approach to life. We have taken a calculated risk by making arrangements to do something special in 2012, a couple of months beyond Steve's next assessment in mid-December. However, we are no more able to make a firm commitment to do something in June or July next year than we able to predict the future with any confidence by gazing into a crystal ball.

So - back into the here and now. When you plan your life in blocks of three months, things tend to get crammed in to make the most of this relatively short space of time. After a little lull in activity recently, we are about to enter another lively phase of life. Don't worry if the blog goes quiet for a bit. We are just busy having fun!

Desperation; Pacification; Expectation; Acclamation; Realization

2011-10-15T15:25:00.000+01:00

If you are of a certain age or happen to collect old shop signs, you may be familiar with the Fry's Five Boys chocolate bar advertisement from the 1960s. If not, this is what I'm talking about:

Desperation; Pacification; Expectation; Acclamation; Realization

I've felt a little bit like the boy in the advert this week - going through a range of similar emotions, but not necessarily in the same order!

This time last week, we were expecting visitors......Time to catch up on housework, make home look welcoming and ensure there was enough clean bedding for our guests. Fortunately all was ready by the time they arrived (earlier than expected) after a day walking the Thames Path, so we didn't get to the desperation stage! In fact, we enjoyed a lovely meal out on Saturday night with Di and Gwen, then walked it off on Sunday morning joining them for a few miles along the Thames towpath, before heading home.

However, I confess to feeling slightly desperate on and off throughout the week whilst trying to finalise arrangements for daughter Katie's move into a new flat in Manchester which is supposed to happen very soon. Many phone calls and e-mails later, I think we are nearly there, but it could still all go horribly wrong at the last minute.......

We spent Thursday afternoon and evening in London at the AOP (Association of Photographers) Open Awards 2011 exhibition. The intention had been to visit some of the other work on show in the Brick Lane area as part of PhotoMonth, the East London Photography Festival, before going on to the AOP launch party. However, the first "exhibition" turned out to be a few photos tucked away in the basement of a cafe bar next to the toilets, and the second venue - a pub - didn't appear to have any photography on show. Tired of wandering round, we headed for the old Spitalfields Market, found somewhere good to eat and were pacified with a couple of happy hour Mojitos while we waited for our food.

I didn't have any great expectations of winning one of the judge's or people's choice awards which were announced at the AOP Open later that evening, but I was very pleased that one of my images was amongst the 66 photos selected for the exhibition out of over 1500 submitted by both professional and amateur photographers from all over the world.

Steve's good news on the photography came yesterday. He has been shortlisted in the Art 4 Wards project to provide artwork for one of our local hospitals, the Nuffield Orthopaedic Centre. The Trust wants to buy four of his prints to cheer up patients and staff. So acclamation for Steve! And one member of staff may be interested in buying my submission, so I am pacified.....

All week, my expectations have been mounting as I anticipated reaching the magic number of 1000 images posted on Fotoblur - an international online photographic community which I joined in August 2009, not long after Steve was first diagnosed with mesothelioma. A daily dose of Fotoblur was one of the things that helped me keep going back then - a sort of creative lifeline which I clung to while Steve was going through chemo, something positive to occupy my mind while he was napping in the day and having early nights to manage the side effects of the treatment.

I reached the magic number yesterday and posted the 1000th image with a thank you note to Lance Ramoth (Fotoblur's founder) and the members of the community who have provided support, encouragement and inspiration over the last two years. The response has been overwhelming and very touching. Like the support from the Meso Warriors on Facebook, none of this would have been possible without the internet. So - acclamation for virtual friends and the world wide web!

On and off throughout the week, I have been checking on the progress of other Meso Warriors - Anita in Oz is recovering well from surgery; Mavis in Kent has just started her chemo and drug trial - so far so good; Ronny is still fighting hard; Jan is back from Greece, feeling positive and make plans for next year. I have added another blog under We are not alone - Amanda, whose partner was diagnosed with mesothelioma in October 2010 and is still here, still fighting, still enjoying life one year on. I'm sure we all have times when we feel desperation, but we learn how to manage our expectations and realize the importance of making the most of life - a good advert for how to live with mesothelioma :-)

breaking the (self-imposed) rules

2011-10-12T11:29:00.001+01:00

If you have dipped into this blog before, you will probably be aware that since Steve was diagnosed with mesothelioma, our lives have been planned around his three-monthly hospital assessments. We rarely make important commitments beyond the date of the next assessment when we know what's going on inside and whether or not we will be living with another course of chemotherapy, and all the hospital visits and side effects that entails.

Taking a short term view is partly social - having made a commitment, we hate letting people down. It's partly financial - a mesothelioma diagnosis makes getting insurance difficult (if not impossible) and usually very expensive; without insurance, hard earned money is lost if plans have to be cancelled for any reason. It's also partly about managing expectations; it's very demoralizing to look forward to something very much, only to find that you can't make it because mesothelioma as reared its ugly head in one way or another.

It is therefore with some trepidation that we have just broken one of our self-imposed rules and made plans to do something special in 2012, a few months after Steve's next hospital assessment in mid-December. However, we won't be letting down any friends if it all goes wrong on this occasion. Having had problems with insurance in the past, we now know about another company which specializes in insuring people with pre-existing medical conditions, including cancer, thanks to a contact at the Mesothelioma Day event. All being well, Steve will be able to get insurance nearer the time, so there is a good chance that financial considerations won't be a big issue.

How we will deal with managing expectations if things go wrong, I'm not sure. However we are enjoying the anticipation of a special occasion in a few months time; unusually for us, Steve has made all the arrangements this time, a sign that he's feeling confident about the future. And wouldn't life be boring if we didn't take the odd calculated risk occasionally? If we have to change our plans because of Steve's health, I imagine that missing out on what might have been would be the last thing on our minds - we would be focussed on fighting the mesothelioma and getting through whatever lies ahead.

One of the things in the PETAL philosophy of living with mesothelioma (blog post 20 June 2009) is setting "Targets" and another thing is "Living your life". We may have broken a self-imposed rule but we have given ourselves another target to aim for and another life experience to enjoy. I think that ticks the "Positive mental attitude" box too. We're doing well!

looking forward to autumn

2011-10-07T11:08:00.001+01:00

The Indian summer is most definitely over. Time to look forward to the autumn. It feels very much like starting a new term at school!

Last night, we celebrated the news that our daughter Katie has found a new flat in Manchester. We'll be up there again in a few weeks time to help her move in.

Oxford Photographic Society's 2011 exhibition opened on Sunday in the Town Hall Gallery, so we must find time to visit and have a good look. Please drop in if you are in the area between now and the end of October. If you have read the blog for 20 September, you will recognise my image!

We are looking forward to visitors this weekend. Di and Gwen are walking the Thames Path long distance footpath and will be reaching Oxford soon, giving us the opportunity to provide B & B for the intrepid walkers and catch up on news.

We are fortunate to have other good things to look forward to in October and November, but you'll have to come back to find out what they are. In the meantime, we are thinking of our meso warrior friends who are not so fortunate, in particular the family and friends of Mick in Australia and Becky in the USA who both died recently; Anita in Australia who is recovering from surgery; Ronny who is fighting hard to beat a 4-8 month prognosis and Mavis who will shortly be back on chemo and taking part in a new Phase 3 drug trial NGR-hTNF.

NGR-hTNF acts by selectively targets the blood supply to the tumour. It showed great promise in the Phase 2 stage, where patients who received the drug on a weekly (rather than 3 weekly) basis stayed free of disease progression for more than 9 months, compared to a median duration of 4.7 months overall. I know from experience not to give too much weight to crude statistics when assessing an individual's response. However, these stats look good. Nine months progression-free survival may not sound like very long if you are fit and healthy. But believe me, you can cram an awful lot of life into that amount of time if you have an incurable disease. May it work even better for those taking part in the Phase 3 trial. I have added a link about NGR-hTNF under clinical trials, top right.

a sad day for another Steve

2011-10-06T16:20:00.001+01:00

We woke this morning to the sad news that Steve Jobs had lost his final battle with pancreatic cancer. The man was an inspiration in more than just the obvious ways - Apple Macs and lots of wonderful things beginning with "i" .......

Please take some time to watch this video of his speech to students at Stanford University USA in 2005, the year after he was diagnosed with cancer, in which he talks about

joining the dots
love and loss
death

Watch, listen and be inspired.....

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma - which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow know what you truly want to become. Everything else is secondary"

Mesothelioma Patient and Carers Day

2011-10-05T20:12:00.001+01:00

This year's Mesothelioma Patient and Carers Day on 1 October was packed with useful information. I imagine that there will be a report on the Mesothelioma UK website at some time, but here are the things that we found very helpful:

One of the problems with standard systemic chemotherapy is (a) that it works better for some than others and (b) it affects all fast growing cells in the body, hence the nasty side effects. Jeremy Steele (Oncology Consultant St Barts) talked about targeted/individual treatment, which aims to switch off and maximize damage to cancer cells, whilst minimizing damage to healthy cells and boosting anti-cancer defences. The key is to find the "switch" to trigger the suicide mechanism in cancer cells (apoptoisis, to use the medical term).

Work is progressing on gene therapy as a way to correct genetic abnormalities which cause cells to keep growing, such as the ADAMS trial at St Barts, Guys and Southampton. The SKOPOS trial in Cardiff combines chemotherapy with the TroVax vaccine which tricks the cancer cells into becoming more visible and therefore more vulnerable to attack by the body's own defences. The Meso-2 trial of STA-9090 (ganetespib) works on the same principle, I believe. I have added a new section on the right with links to these clinical trials, which will be updated as and when I hear about more. Please let me know if you are on a trial which isn't listed and send me a link!

Lastly, Jeremy Steele talked about the Biobank, based in Cambridge, which is a database of meso cancer biopsy samples for use in research into genetic mutations.

Mary Hesdorffer talked about experience in the USA. There is much helpful information on the Mesothelioma Applied Research Foundation website Curemeso (I have added a link under Find out more on the right). It is a sad fact but true, that whilst the USA has a huge database of clinical trials throughout the world, the coverage for trials in the UK is patchy to say the least. There isn't a single comprehensive source of who is doing what in this country. Even Mesothelioma UK doesn't know about all the clinical trials going on here which relate specifically to this disease. A yawning gap to be filled. Is it surprising in these circumstances that mesothelioma patients and carers turn to social networking sites like Facebook to find out what's going on!

Listening to Michael Lees talk about Asbestos in Schools is both a pleasure (such knowledge) and a pain (the time bomb awaiting our children, teachers and support staff exposed to asbestos in educational establishments is seriously scary). There is a link to the website on the right. Visit this site if you have children, partners or friends who have spent time in system-built schools from the 50s, 60s, 70s, or older buildings refurbished during that time when asbestos was used extensively for insulation, fire-proofing, lagging, floor and ceiling tiles and such like.

Helen Clayson's session on understanding pain was an eye opener. The first step should be a proper assessment of the pain (type, severity, cause) followed by selection of the appropriate medication based on the individual's needs. Patients need to be given both information about and instructions on how to use the medication, including managing side effects. I would have though this was standard practice, but it appears not (gulp!) Regular reviews are needed to see if its working, adjusting and refining the approach to pain management as necessary and prompt referral to a specialist if things go wrong. All sorts of pain relief were touched on, depending on the type, source and severity of the pain, including morphine; cordotomy (killing the nerve which carries the pain if the body does not respond to other things); the use of local anesthetic patches; anti-inflammatory drugs such as ibruprofen and radiotherapy in some cases.

Liz Darlison drew our attention to a useful booklet about managing breathlessness, a joint production by MacMillan and Cancerbackup, which includes a CD Relax and Breathe, while Julie Robinson persuaded most of us to stop feeling self-conscious and join in the chair-based exercises in the Move it or loose it session! Tony Whitson gave a helpful update on Benefits and Hayley Richardson talked about the British Lung Foundation's Action Mesothelioma campaign, designed to raise awareness in the DIY community of the risks of disturbing asbestos. Link added under Raising Awareness.

One of the highlights of the day for us was a talk by Peter Szlosarek, another Barts oncology consultant, on the subject of clinical trials in the UK for people with mesothelioma.
This talk put more flesh on the bones of the ADAMS trial, mentioned earlier in the day by Jeremy Steele. If you want to find out more about taking part in this trial e-mail Peter at adam@qmcr.qmul.ac.uk He aslo gave a useful jargon buster to help understanding typical trial types:

drugs ending in "mabs" involve anti-bodies
drugs ending in "nibs" starve the tumour of blood
drugs ending in "mus" are blockers or one sort or another
vaccines usually involve anti-bodies or dendritic cells
the ADAMs trial drug is based on enzymes

The day finished with a session by Natalie Doyle about keeping up your spirits and a wonderful quote "being happy doesn't mean that everything is perfect. It means you have looked beyond the imperfections." I'll drink to that!

I've left the two most important people to last: the patients. Debbie Brewer who inspires us all and Suzanne Philbin-Jeng, who plucked up the courage to talk about peritoneal mesothelioma - even more rare than pleural mesothelioma. You are both brilliant examples to us all! Thank you.

Indian summer

2011-10-02T16:26:00.000+01:00

Question:
What do you do to make the most of an Indian summer in the UK?

Answer 1: Go to somewhere better known for its rain and enjoy the views under a blue sky and bright sunshine....

....so that's what we did last weekend - spending some time with our daughter Katie in Manchester, and taking the opportunity to show her around Salford Quays as well as exploring the "Northern Quarter" an area which is new to us.

We also managed to fit in a visit to Charlecote Park on the way home where we enjoyed one of the best displays of pumpkins we could remember seeing and treated ourselves to some heritage tomatoes to have with our evening meal (ugly to look at, but great flavour!)

Answer 2: Go on safari....

Or at least that's what it felt like we were doing as we spent a day at the Cotswold Wildlife Park, admiring the white rhino, zebra, lions, giraffes, red pandas, flamingoes, penguins and a host of other animals.

One of the highlights for us was a stroll through "Madagascar" where the lemurs roam freely, meandering close to visitors without fear....(that's Steve in the background!)

Answer 3:

Escape the heat by spending the day in an air-conditioned room with good company....and that's what we did yesterday, at the Mesothelioma Patient and Carers Day event. I'll write about what we learned in a separate blog, but I can say here how wonderful it was to see many of the Meso Warriors face-to-face as well as other people we recognised from last year's conference, still very much alive and kicking. As before, there were heartbreaking moments as people talked about their experiences, but these were more than counter-balanced by uplifting stories, positive news and helpful advice. Thank you Mesothelioma UK for such a wonderful event!

Here is Steve with Debbie (Brewer) and Mavis (Nye) two other bloggers whose names might be familiar to you!

Mesothelioma Awareness Day

2011-09-26T18:49:00.000+01:00

Today, 26 September, is Mesothelioma Awareness Day in the USA. The day was set aside by Congress as a time to raise the public's awareness of the dangers of asbestos exposure. The event was started by a group of Meso Foundation volunteers in 2004. The level of public involvement and awareness has increased every subsequent year on this date.

September 26th is a day to remember those who have fallen victim to Mesothelioma and the effects of asbestos exposure. It is a day to offer a revitalized hope for those who suffer with the disease today. And it is a day to focus on the means to find an answer A CURE for those who are stricken with the disease tomorrow.

heat wave

2011-09-24T11:29:00.000+01:00

There's been a heat wave here. Temperature rose to over 39 degrees C on Wednesday and stayed there until this morning. It's now down to a more comfortable 38C.

No - I'm not referring to the effect of global warming on Oxford's micro-climate. Only me laid low with a bug this last week, which is now on it's way out now I hope. Just another example that life goes on with its normal ups and downs, even while you are grappling with big issues like incurable cancer.

Other things are not going to plan at the moment. The visitors we were expecting this weekend can't make it after all, and my arrangements for walking the next stretch of the London Loop have been put on hold for reasons outside my walking partner's control. Will be thinking of you Sarah - good luck! As a result, we have an unexpected "window of opportunity" to do whatever takes our fancy over the next week. A great opportunity to make the most of the warm sunny weather the Met Office is forecasting. I'm so glad I will have recovered from my personal heat wave before the weather hots up.

Looking further forward, all being well, we will soon be meeting up with other members of the mesothelioma community in the UK. Following the blogs of other meso warriors means we feel like old friends, even though we have only met once before in the flesh. It will be good to see each other face-to-face!

the human MOT and another celebration

2011-09-20T12:50:00.000+01:00

Back in July, Steve received a letter from our GP inviting him to come in for a free NHS health check to assess his risk of developing heart disease, stroke, kidney disease and diabetes. Apparently, it's a service offered to people between 40 and 74 years old once every five years - not that either of us have ever been invited to attend before, even though we've been in that age group for some time now!

Initially, Steve did not feel inclined to accept the invitation given that he has an incurable cancer. However, I pointed out to him that as he is already beating the odds in terms of mesothelioma survival rates*, it would be a pity to be killed off instead by some other disease that could be treated if picked up early enough. Persuaded by the logic of this argument, he finally attended the surgery this morning where he was weighed, measured, sample taken for chloresterol testing, blood pressure measured, and questions answered about diet, smoking and exercise. The whole process took less than ten minutes. We were able to do a bit of food shopping and be back home in time for coffee at 10. 30 am.

If only the car service tomorrow is as quick and smooth!

Tonight we will be celebrating again - photography this time; I have just been awarded another FIAP (Federation de l'Art Photographique) gold medal for a picture of the Guggenhiem Gallery in Bilbao, taken on our visit there back in June :-)

* On the subject of mesothelioma survival rates, in December 20120 Cancer Research UK published updated key stats on the disease - the good news is that one year survival rates have increased by about 30% since the late 1980s. For patients 2002-2006, the one year survival rate was 34% for men and 40% for women. It's good to know that Steve - and many of the other meso warriors diagnosed during that period and since, and still going strong - are pushing those survival rates up much higher. And long may it continue.

putting things in perspective

2011-09-19T13:32:00.004+01:00

Isn't it strange how your memory plays tricks on you?

If you were to ask me now how it felt when Steve was having chemotherapy back in 2009, my immediate response would be to say tough. However, when Steve mentioned last week that the "Goodwood Revival" event was taking place this weekend, his remark immediately brought back floods of happy memories of a wonderful visit to Chichester, staying with our friends Anne and Colin. We dressed up in 50s and 60s gear, enjoyed looking at other people's outfits from the 40s, 50s and 60s and watching cars and bikes from that era race round the circuit at the historic motor sport and aviation event at Goodwood, Sussex. Looking back at the blog post for 20 September 2009, I realize now that we managed to enjoy ourselves greatly even though Steve was half way through six cycles of chemo at that time.

Two years later, and we spent the equivalent September Saturday in London at the Open House event, visiting buildings not usually open to the public. After a frustrating start at St Pancreas, where we arrived 30 minutes after opening only to find that the tours of the former Midland Grand Hotel (now called the Renaissance Hotel) were already full for the rest of the day, things began to look up.

We head south of the river, enjoyed the gorillas lined up along the embankment, then took the lift to the roof terrace at the top of City Hall to enjoy the 360 degree panorama over London before winding our way gently down the amazing spiral ramp inside the building, snapping away happily like loads of other photographers!

After lunch at City Hall, we did the short walk to Carmarthen Place to look around two wooden eco houses and an artist's studio with a green roof (I'm hoping to inspire Steve to do something similar but on a very much smaller scale in our garden to replace the rotting shed and provide a studio and storage...)

Revived by a pot of tea and a brownie at the Tea Pod in the nearby Fashion and Textile Museum, we carried on to Lambeth Bridge Road and the House of Antoni and Alison to see the renovation of a 1820's terraced townhouse and enjoy some of the fashion and design artwork of the couple who undertook the project.

Image courtesy of Time Out

For once, we allowed enough time to get back to Paddington and the train home without having to rush. Even so, after an exhausting long day out on Saturday it was good to relax on Sunday and top off the day enjoying a wonderful meal with our friends Jonathan and Sally to celebrate Steve still being very much alive and kicking two years and three months post-diagnosis. The perfect finish to a very enjoyable weekend - thank you!

Which brings me back to the theme of today's blog - as I hunted for some paper this morning to write today's "to do" list, I came across a spiral bound note pad with scribbles going back to 2009, including a note I had written in October 2009 at a discussion with Dr Louise when we looked at Steve's scan at the start of chemotherapy cycle 5.

There are simply two sentences. The first says

"Uncertainty is better than certainty, as hope is not ruled out"

The second sentence reads

"Scan - very small areas around the outer edge (of the right lung) are thick in places, but 99% is clear - reassuring"

After the last two assessments, we had been concerned that some disease progression had taken place since diagnosis, but had been trying to see this a positive outcome given the very, very slow rate of growth and the subtle change in pleural thickening which is almost imperceptible. In a strange way, finding this scribbled note from two years ago - which I had completely forgotten about - helps puts things in perspective and reassures me that there is a good foundation for feeling positive.

It can be difficult to live with uncertainty, but it allows us to hope - that a cure will be found; that chemo will shrink the tumour or slow down its rate of growth; that we will survive to achieve the next personal target; that there will be good days while treatment is in progress and a life to enjoy after chemo. When the evil has escaped, hope is still there at the bottom of Pandora's box to help us keep going through the bad times, along with the love and support of family and friends.

Breathtaking

2011-09-16T17:25:00.001+01:00

If you or someone you love have been affected by mesothelioma, please take the time to watch the trailer for the documentary "Breathtaking."

Kathleen Mullen investigates her father's death from Mesothelioma and Canada’s explicit role in domestically mining, and internationally exporting asbestos.

The Asbestos Disease Awareness Organization (ADAO) will be offering a livestream screening of the movie on its website September 26th at 6:30. Follow the link on the right under "Find out more about mesothelioma" to access the ADAO website.

And watch.

Please.

27 months since diagnosis and life goes on

2011-09-16T16:51:00.001+01:00

It's 16 September 2011, which means it's 27 months to the day that Steve was diagnosed with mesothelioma. If you read yesterday's post about his latest hospital assessment, you will know that disease progression since then has been almost imperceptible and we are now looking forward to enjoying the autumn.

It struck me this morning about how our lives have changed since that fateful day in 2009, sometimes in very positive ways.

There are little additions to our day-to-day routines. I read daily Google alerts on anything and everything to do with mesothelioma and follow up links shared with the meso warriors on Facebook. It's information like this that has given rise to one of Steve's daily rituals, supplementing his diet with extra vitamins, omega 3 rich fish oil, Agaricus Blazei -a medicinal mushroom- and tumeric, all reputed to help boost the immune system, as well as taking a non-steroidal anti-inflammatory drug (NSAID) to treat arthritis, which research has shown can have the side effect of shrinking tumours. We have no idea if any of this is contributing to his continued stability, but he's not going to stop to find out!

A few days after Steve was diagnosed, I stumbled upon Graham Sherlock-Brown's PETAL philosophy for living with mesothelioma: a Positive mental attitude; Eating well and exercise; setting Targets; Adapting to change and Living your life. In retrospect, we have incorporated much if not all of that philosophy into our own lives over the last two years, although we still need to do a bit more work on the exercise element, in addition to walking....

During the first six months of chemotherapy, we kept going with the support of family and friends, treating ourselves to days out, the very occasional weekend away, and lots of cream teas as we worked our way round the National Trust tea rooms within striking distance of home.

Putting away the sick bucket for the last time was cause for great celebration! As other side effects of chemo (tiredness and peripheral neuropathy i.e. numbness and tingling in fingers and toes) continued to wear off, we became more adventurous in where we went and what we did - making the most of life within a three-monthly time horizon.

We became far more sociable than before, enjoying the company of family and friends wherever and whenever the opportunity arose. We have made new virtual friends in the meso community - sharing information, giving and receiving support on Facebook, through e-mails and following the blogs of others on a similar journey.

I've added a new blog today under "We are not alone". Tess Gully was diagnosed with mesothelioma in September 2010. Tess has got through her first year by setting herself a series of short and longer term targets to strive for - a key element in the PETAL philosophy. Keep it up Tess!

Although I loved my work, it robbed me of precious time I could otherwise be sharing with Steve. It was a natural choice to volunteer for "early release" when the opportunity presented itself. I have rarely looked back since, other than to keep in touch with friends from that part of my life.

Having more time together has allowed us to indulge a shared passion for art and photography - we've been to more exhibitions and taken more images these last six months than in the previous 3-4 years. Pity we've had to turn down an invitation from the RHS to exhibit at next's year's Chelsea Flower Show - one of the downsides of being unable to make big commitments that far ahead in time.

However, living very much in the here and now means that we can usually say yes when opportunities present themselves. A bit of spontaneity after a lifetime of planning a long way ahead is wonderful (although we still have to be organized to make the most of it!)

Some weeks ago, a virtual friend who's husband died as a result of mesothelioma said in an e-mail "As you know, it's a real roller coaster, but it's obvious that you are really getting the most out of life and that is exactly what we should all do. It sounds strange, but some of the happiest times Andy and I spent together was after the diagnosis"

It doesn't sound strange at all to me....We're looking forward to the next three months. Oh yes, indeed!

deja vu

2011-09-15T19:35:00.000+01:00

There are somethings you hope you never have to experience again, and others you would be happy to repeat again and again.

At Steve's last assessment in June, we were told that his mesothelioma is growing, but so very, very slowly that the difference between X-rays taken at three monthly intervals is imperceptible - you have to compare the most recent picture with the earliest to spot the small amount of change that has taken place over the last two years. Today's assessment felt like a bit like deja vu - the doctor was different but the news was the same - such a subtle change that the difference is only discernible when comparing X-rays separated by long period of time. Steve's chest sounds good; the pleura are intact; no fluid build up and no sign that the mesothelioma has spread to any other parts of his body.

In short, no need for any treatment - come back in December for the next check up, unless there are any problems in between then and now.

Given that mesothelioma can be such an aggressive cancer and bearing in mind that Steve is not in pain, not breathless and is able to lead a "normal" life in terms of day-to-day activities, getting that same news has got to be a good deja vu experience. Even so, disease progression of any type is a reminder of how vulnerable he is - as if we need reminding - and such thoughts don't exactly lift the spirits. We were both a bit quiet as we left the hospital, digesting and analysizing the doctor's every word.

When I asked Steve how he felt about the outcome of today's assessment, not surprisingly, he replied that what he really wanted was a silver bullet - something that would stop the mesothelioma dead in its tracks, take it away altogether. But until a cure for mesothelioma is found, he knows that isn't going to happen. Although it's killing him slowly, provided this very slow rate of growth continues, he still has a few years of good life to look forward to. And who knows - may be the silver bullet will be found in the meantime.

He also pointed out that at least he knew what was going on inside him and could live his life accordingly. So many people have no idea that their hearts are weakening, arteries furring up, or that a degenerative disease is slowing killing them until it's too late.

Having this conversation took me back to memories of the Velcade drug trial, and our initial disappointment that the mesothelioma did not shrink in response to the chemotherapy treatment. However, Dr Louise kept telling us that stable is GOOD, especially for someone in Steve's otherwise good condition. Over the two years since then, we have realized that she was right.

By the time we arrived home, we were feeling more positive and that feeling has grown as the day wore on. The half empty glass now looks half full. The lethargy of the last few days is lifting. We have started doing things and making plans. The car is booked in for a service; Steve is booked in for his over 60s general health check; we've splashed out on a new tap for the kitchen and bottle of Prosecco to celebrate. We can firm up plans that have only been lightly pencilled in and look forward to a wonderful autumn. If we haven't seen you over the summer, don't be surprised to hear from us soon!

the waiting game

2011-09-14T11:06:00.000+01:00

It's the day before Steve's next hospital assessment. By this time tomorrow, we will have a clearer idea of what (if anything) has been going on inside him, a better feel for how life will unfold over the next few months and will be able make some plans. But today we're playing the waiting game, each in our own way.

Steve is keeping himself occupied with plumbing matters (of the kitchen/bathroom type!) researching new taps, replacement bits for the kitchen sink, a new seat for the lavatory......very practical, very here and now, very matter of fact. "I'll see if they have them in stock" he says, "so we can pick them up on the way back from the hospital."

On the other hand, I feel like I am treading water. Can't settle down to do anything. With the hospital visit hanging over us, I find it difficult to focus on things that need concentration or decision-making. Almost everything on the "to do" list seems somehow dependent on the outcome of tomorrow's assessment. I'm reluctant to start things that I can't finish today, for fear that tomorrow we might hear news that sets Steve back on the path of chemotherapy, with life revolving once again around frequent hospital visits. If that happens, I know that we will manage as we did before, but it doesn't make the waiting any easier.

At times like this, it's always comforting to hear from others who know from experience what we are going through. One such person is Jan, whose e-mail this morning reminded me that Steve is aware of his own body and can feel the signs of things changing, often before the doctors know what's going on. As he still feels good, the chances are his condition is still stable. I'm keeping that thought in my head as I try to make a decision about what to do with the rest of the day.

Perhaps now would be a good time to catch up on the ironing? On the other hand, the sun is shining and there are big swathes of blue sky - better to be outdoors? Oh dear, decisions, decisions........what was I saying about being unable to settle down and do things?

bonjour Septembre!

2011-09-12T20:41:00.002+01:00

With Steve's next assessment fast approaching, what better way to distract our minds than take a short break in France. So that's where we greeted the arrival of September, landing at Montpellier airport, hiring a car and heading off to the Camargue for lunch in the walled city of Aigue-Mortes en route for Saintes Marie de la Mare, our base for the first two nights of the holiday.

Aigues-Mortes

Saintes Marie de la Mer

In the morning of day 2, we set out for the Camargue national park in search of white horses, black bulls and pink flamingoes (but ended up finding them much closer to home!) However, we enjoyed watching the egrets fishing in the shallow etangs.

After lunch, we treated ourselves to a boat trip along the coast and up the Petit Rhone, for a different view of the area and more white horses.

Day 3, we moved on along to coast, stopping at Sete and Beziers to take the air, stretch our legs and have a bite to eat

By early evening, we had arrived at Caracassonne, our base for that night and the night after. This was the view from our B & B, underneath the city walls!

We spent the next day exploring the old city, the castle and the city walls

Day 5 we headed inland to visit the Millau viaduct before arriving at the Mas du Chene in the Cevennes, where we stayed for two nights with our dear friends and wonderful hosts, Richard and Alison.

The next morning saw us pottering around the market at St Jean du Gard and the afternoon visiting the Bambouserie - an amazing plantation of bamboo and other exotic plants

After a fond farewell to Richard and Alison, we headed back Montpellier for lunch and a visit to the Redon exhibition before going on to the coast at Palavas-des-Flots, where we walked on the beach and finished our wine and nibbles on the hotel balcony watching the sea as the sun went down.

We were back in the UK by lunchtime on Thursday, out for a meal with friends to bid au revoir to Ruth, before she went back to the far east. Thank you Em and Nick for a lovely spread!

After a quick turnaround on Friday, we were off again on Saturday to a family do to celebrate a special 70th birthday with my cousin, her husband and their family and friends, then on to stay the night with our friends, Keith and Glynis who live nearby. Our short break away from home finished yesterday, with a wander around the delightful market town of Woodbridge in Suffolk. Although tempted to stay longer, the thought of driving back today in high winds was not appealing, so we headed home in the early evening. Many thanks Keith and Glynis for being excellent hosts, as always.

So much for the distraction of traveling! We now have to face up to Steve's next assessment on Thursday, which will determine how life will unfold over the next three months. My mood is saddened by the loss of another meso warrior, Julie Bastion (Jules) who died in Australia while we were away and whose funeral was today, on the beach. However, our friend in Kent, Mavis, is feeling more positive after being offered the possibility of taking part in a new drug trial closer to home which is good news! I can see there will be lots to talk about when many mesothelioma patients and their carers gather in London in a few weeks time.

Last but not, happy birthday for tomorrow, Jack!

P S Oh dear, the formatting of today's post has gone a bit awry. No matter - life's too short to worry about such minor imperfections!

au revoir August

2011-08-31T15:27:00.000+01:00

Here we are, the last day of August. Oh boy - that summer went quickly!

Our weather dependent plans for last weekend didn't work out as we had hoped, but we did get to see some of the Wride family in Bristol and catch up with their news so it was a worthwhile trip nevertheless. The pictures from the Coast exhibition have been collected, so we are up-to-date on that front too.

We are now busy preparing for our next adventure - a little something to help take our minds off Steve's hospital assessment in a fortnight. If you want to know what we've been up to, call back next week sometime......

a week in pictures

2011-08-27T11:02:00.003+01:00

After the excitement of the Brompton World Championship Race last weekend it has been a relatively quiet week here, dominated by pictures of one sort or another.

We spent a day in London looking at other people's pictures and art installations in Tate Britain, then hopped on the river bus to Tate Modern for a long leisurely lunch enjoying the views of St Paul's Cathedral across the river before taking in some more artwork later that day.

City skyline - Linda

We've collected a print from the Artspool Gallery which was inadvertently left behind at the end of the Artweeks exhibition back in May, and delivered our prints to the Nuffield Orthopaedic Centre (NOC) here in Oxford which will be hung later today as part of the Art for Wards exhibition to cheer up patients and staff :-)

Tulips - Steve

Our dear friend and neighour Ludo bravely volunteered to act as a model for our first tentative steps in portrait photography in return for a set of prints. Only now do I fully appreciate why portrait photographers have assistants, make-up, hair stylists and wardrobe artists to help them!

Ludo supermodel

This is the last weekend of the Coast exhibition at the Cornerstone Gallery, so we'll be back there next week to collect any unsold prints.

Piel Island - Steve

Bank Holiday, Brighton - Linda

Before then, we have plans for the weekend. However, the main event is weather dependent, so you'll have to drop by next week to see whether or not it happened. I can say that we won't be sitting in the mud at the Reading Festival....been there, done that......why does it always seem to rain over the bank holiday Festival weekend?

Coming back from the NOC this morning, we both noticed that the leaves on the trees are beginning to change colour and the light is different, signaling the start of a new season. Steve's next hospital assessment is just over a fortnight away, which means inevitably that tensions and stress levels will start to rise as we wait to find out what's been going on inside over the last three months. Time to keep ourselves occupied with enjoyable things and make the most of any sunshine we can find!

Last but not least, we send our love to Mavis who was diagnosed with mesothelioma in June 2009, like Steve. As she says, we have been traveling this journey together. Today is a very special day for Mavis - her 70th birthday. Have a great day Mavis and many happy returns!

Mavis by Ray (I'm guessing!)

cheering on a friend at the world championship!

2011-08-22T23:44:00.000+01:00

If one of your friends was taking part in a world championship, wouldn't you be excited? We were! Rob came all the way down from Leeds on Saturday to take part in a cycle race at Blenheim Palace, not far from here. And not just any old cycle race. This was a world championship! For people on Brompton folding bikes. And you had to cycle two laps round the parkland of Blenheim Palace wearing a suit jacket or blazer, shirt with a collar and a tie, in keeping with the Brompton's main market - commuters and city dwellers ;-)

The support team pumped him full of calories on Saturday night to give him sustained energy and took him off to Woodstock for the race, one of a number held that day to raise funds for breast cancer awareness. We cheered him off at the start, caught up with him again on lap 2 and made it back to the finish in time to see him cross the line.

Well done Rob and to everyone else who took part, especially those wearing even more creative versions of the business suit. What a hoot! I am tempted to get my Brompton out of the garden shed where it has been mouldering away for the last ten years and have a go myself next year. Even Steve is toying with the idea of taking part. Oh, the joy of positive thinking!

two years, two months, one day....and still counting

2011-08-17T18:14:00.001+01:00

When Steve was diagnosed with mesothelioma on 16 June 2009, our world fell apart. I could not bring myself to think about what lay ahead. The future was a no-go area. And here we are, two years, two months and one day since diagnosis and still counting. Steve is very much alive and kicking. We are living life to the full and trying to make the most of every day (although I must remember to build in some time to relax - chilling out is good too!)

We are both acutely aware that Steve is very fortunate to have had a stable disease for so long. Others have not been so lucky. Today's blog is dedicated to all those with mesothelioma who have lost the fight, their families and friends. It is also dedicated to all the bravo meso warriors who continue to battle the disease, and those who support them so courageously. We follow your stories and share your emotions.

In particular, today's blog is dedicated to Mavis who will find out on Friday whether she will be taking part in a drug trial at Barts or receiving standard chemo, and to Ronny who started Vinorelbine chemotherapy today, determined to make the most of whatever chance she has of extending her life - as she says, a less than 10% chance of a positive response is still better than no chance at all. Keep up the positive attitude Ronny!

I am finishing today's with words from Julie in Australia who has discontinued chemotherapy three years post-diagnosis and is now waging her fight on a different level, going with nature. Although her tumours had grown alarmingly, she remains positive. She finished her most recent blog with the following words, which express her emotions so eloquently:

Mentally – I think I have come to a very good place. I have times of feeling completely at peace and acceptance. Seemingly simple things give me great joy. I have always believed that bad things are never all bad Some good comes out of the the worst situations. Of course there are the times when dark thoughts creep up on me – but these are becoming less often now. I think we have those thoughts whether we are sick or not.

I hope that when our time comes, we can all find such peace. Stay warm Julie x

all lit up but nowhere to go....

2011-08-16T12:44:00.001+01:00

We enjoyed our recent hot air balloon trip so much that when the opportunity came along to do it again - but this time, flying with more than 100 other balloons at the Bristol International Balloon Fiesta - we grabbed it gleefully.

Although Sunday dawned with bright sun and blues skies, sadly the wind was too strong for the mass ascent that evening so we didn't take to the skies after all. However, Steve is determined to be around to try to fly again at next year's fiesta, a measure of how good he is feeling at the moment.

Nevertheless, we did get to enjoy the "night glow" on Saturday evening, when the balloons inflate as darkness falls and turn their burners on and off to coordinate with music.

We also enjoyed an amazing display by the Red Arrows on Sunday afternoon.

And we do get another chance to fly over Bristol, which will be wonderful even without the company of other balloons!

Here we are in the Virgin balloon, a couple of weeks ago over Oxfordshire

True grit - Ronny's story

2011-08-10T20:08:00.002+01:00

Mesothelioma is an awful disease - incurable, unpredictable, aggressive. However, looking back through the blog brings home to me how fortunate Steve is that his condition has been stable since he was diagnosed almost 26 months ago, and how lucky he is to be able to enjoy life without physical pain, in spite of his compromised lung. The emotional turmoil of living with a terminal illness is something we have just had to learn to face up to, and manage.

As the side effects of chemo wore off in 2010, our day-to-day lives got better and better. We have crammed so much into the the last few months since I finished work, that the blog now reads a bit like a cross between a travelogue and Red Letter Day brochure. We have our ups and downs, closely following the cycle of three monthly hospital assessments, and we can never put out of our minds just how vulnerable Steve is, knowing that Leo the mesothelioma could decide to rouse himself at any time. But that has not stopped us enjoying life.

However, if you dip into the blog from time time you will know that other meso warriors have not been so fortunate in terms of survival, disease progression and the treatment regimes they undergone to improve their chances of survival. It never ceases to amaze me how brave, dignified, resourceful, supportive and determined they all are, taking the chemo and fighting back with every ounce of their strength.

Today's blog is dedicated to Veronica White - or Ronny, as she is known to her family and friends. Following the diagnosis of mesothelioma in April 2008, she has had surgery, mainline chemotherapy and made numerous trips to Germany for chemoembolization under Prof Vogl. If you want to know the whole story, check out her blog (link on the right under We are not alone)

Two weeks ago, Ronny posted on the blog the news that no one wanted to hear:

"Well, the time has come. My Oncologist says that I am in a dangerous phase, a euphemism for ‘final stage’. He says I have just 4 – 8 months to live and that he doesn’t recommend me going onto chemo as he thinks I am so weak that the side effects will outweigh the benefits, if any..... He has given me steroids to make me stronger and will see me in a week and will talk about chemo then. This has been a big shock to us as my last appointment said I was pretty stable, now he says it is growing aggressively and has penetrated my abdomen too....

I am sorry for the bad news, but although we knew it was just a matter of time, it still comes as a shock"

A few days later, her fighting spirit had come back with a vengeance - or as she so eloquently put it "Well, sod it, I am not giving up!" And back she went to Germany for more treatment, which the Prof says will help make her more comfortable. In her most recent post, Ronny says:

"I realise this is now the end game, but whilst there is fight in me I won’t give up. My family are all behind me in this too....Thank you all so much for your kind support; it makes me feel I have an army on my side! In all of this I have made some very good and kind friends"

Ronny, if you read this I just want to say what an inspiration you are. Real, true grit! We all send our love, hugs and support to help you fight on. Have many, many more happy days with your family and friends.

wet, wild and on top of the world!

2011-08-04T15:19:00.002+01:00

Last Christmas, Steve's present to me was a boat rip of my choice. I'm not sure what he was expecting me to go for....but yesterday he found out! I opted for something a bit adventurous - an extreme RIB (rigid inflatable boat) experience.

The Seadogz website says "Ever wanted to feel like James Bond racing away from the bad guys, with the wind in your hair and adrenaline pumping through your veins? Then this trip is for you!" Sounded good to me, so I booked us in for 90 minutes of going wild and getting wet on Southampton Water.

There were a few moments at the safety briefing when we wondered whether I had done the right thing, particularly when the skipper said you might want to think twice about this if you have problems with your lower back or knees (as it gets a bit bumpy out there) or fingers (which you will need to grip tight with). But we decided to have a go anyway and didn't regret a second!

The weather was perfect - hot, blue sky, barely a breeze. If anything, too calm for a good splash, so after heading out of the marina slowly, the skipper made for the wake of the nearest large boat and cut across it at an angle to skim the waves at speed and give us a taste of what was to follow - jumping the waves, turning and zig-zagging through any bit of rough water he could find.

It was SO exciting! Sort of cross between cornering on a powerful motor bike round the bends of a fast race track, riding a frisky horse bareback over high jumps and going down the log flume at a theme park, with added water (speaking from imagination rather than experience!) We would have happily gone round again.....May be another time.

What do you do after such an adrenaline high? Zoom to the top of a 170m tall structure - the Spinnaker Tower in Portsmouth. The tower is taller than the London Eye, Blackpool Tower and Big Ben so the views over the south coast on a wonderful clear day like yesterday were breathtaking.

We dared to walk on air (or rather step out on to the glass floor) on Deck 1 to look down at Gunwharf Quays beneath our feet and enjoyed the view over a cup of tea in the cafe on Deck 2. Then we climbed up to the "crows nest" at the top for a last look over the Solent and Isle of Wight before the descent.

The views from the Spinnaker Tower had whetted our appetites, so before leaving for home we took the opportunity to wander around the historic dockyard - although it was too late (and I confess, we were too tired) to explore the museums and ships.

We both agreed that was one of the best days out we can remember. We may go back one day - perhaps abseil down the tower to raise money for charity! Who knows? Whatever happens, we have some more treasured memories to share. When the going gets tough, we can look back on days like yesterday in the knowledge that we have enjoyed life to the full in spite of Leo lurking in Steve's lungs.

the rest of the birthday weekend and a teaser about what happened next

2011-08-03T23:25:00.000+01:00

The extended birthday celebrations last weekend included a trip to London on Saturday for the opening of the London Salon of Photography's Centenary Exhibition at St James, which includes one of my images Sky Frames, and a flying visit to the Royal Academy before catching the train back to Oxford.

On Sunday we had lunch out with our dear friends Jon and Sally - wonderful food prepared by their daughters and unexpected reunions with people we hadn't seen for many years. As usual, we found it hard to drag ourselves away so it was evening before we arrived home, full, tired but in excellent spirits!

Katie's departure back to Manchester on Monday afternoon marked the end of a special birthday weekend, but we haven't had time to get bored since then. There were more adventures today, including two first time experiences. But more of that tomorrow.....

......I hope the sun shone wherever you were today, as it did on us. Life is good :-)

birthday wishes

2011-07-29T17:18:00.000+01:00

In the 12 months since my last birthday, we have ticked off yet another item on the wish list I wrote in 2009 when Steve was first diagnosed with mesothelioma: I sent him a card to mark his one millionth birthday in March (his 64th birthday in "normal" numbers!) Not only has he reached this milestone, he feels good, has no pain and his condition is stable. That is the best birthday present I could wish for! I wish for it to continue in the coming year and beyond.

By the time I write my next birthday wish list, I hope to be able to tell you that we have reached another milestone - our ruby wedding anniversary in May 2012. But that's a long way off. In the meantime, we have another six weeks to enjoy life before Steve's next hospital assessment in mid-September and a birthday to celebrate this weekend!

The birthday celebrations kicked off at lunchtime with the arrival of daughter Katie from Manchester. We are now back home after lunch out, trying to decide whether we can make room for birthday cake this afternoon and whether we will be able to keep going into this evening if we drink a birthday bottle of Prosecco with the cake. Decisions, decisions :-))

It's been great to read the birthday greetings on Facebook, e-mails and cards - thanks to each and every one of you for helping to make it a special day!

The family celebrations will continue when son Jack arrives in Oxford on Sunday and we join friends for another meal out. In between, we have something else to look forward to - drop by in a few days to find out what we've been up to.

Re-reading this, I feel rather selfish with my birthday wishes - they have been focussed on us. I wish that everyone with mesothelioma has good news in the coming months, especially those who need it the most. You know who you are. Our thoughts are also with Emily, her family and partner Nick - they will know why. Love to you all.

up, up and away!

2011-07-28T22:59:00.004+01:00

It's not often that we get up at the crack of dawn, but we did yesterday for a very good reason: Steve's first ride in a hot air balloon!

After helping the crew inflate the envelope, we climbed into the basket ready for lift off from Oxpens field, close to the city centre, our friend Ruth waving us bye-bye as we floated upwards and flew slowly south.

The sun was rising through the clouds over east Oxford, illuminating the historic buildings in the heart of the city. We could even see our own house, not too far away to the west!

We drifted slowly south, watching the sunlight glinting on the Thames, passing Boars Hill and onwards towards Abingdon. The views were stupendous - villages, farmland with wonderful field patterns and the A34 snaking alongside our route.

We could see people - early-risers walking their dogs and going to work; farm animals and wild animals, including the rabbits in the fields below. A red kite took off beneath us as the sounds drifted gently upwards. The cooling towers of Didcot power station pierced the misty distance.

All too soon, it was time for the pilot to look for somewhere to land. He chose a field on the edge of a village called Steventon and headed for a field with a large marquee where the Truck Festival had taken place the weekend before.

Then drama! Too late to abort the descent, the pilot realized that our landing field was strewn with metal barriers left over from the festival. The basket with passengers landed safely, albeit tipping over to one side - thankfully giving us a view of the sky, rather than the ground - but the balloon envelope started to deflate over the fences, threatening to tear it to shreds.

Once we had stopped moving, everyone got out of the basket as quickly as possible and headed to the metal fences - one person per post - to try to stop the fabric of the balloon from tearing. And it worked, except for one rip which happened as we landed.

Envelope safely stowed, out came the champagne ready for a toast to all who sailed in her and saved the day! Then into the minibus which had arrived while all the excitement had been going on and back into Oxford and home for another cup of coffee before resuming a normal day.

Isn't life exciting?

Picture this.....

2011-07-23T17:13:00.002+01:00

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

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

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

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

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

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

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

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

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

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

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

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

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

a night of contrasts

2011-07-16T14:45:00.001+01:00

Isn't it great to enjoy a night out with friends? The contrast between the start of yesterday's socializing and the second part of the evening was so great, made it feel like two nights out rolled into one.

We started in the Grand Cafe in the city centre, sharing a bottle of prosecco with an Italian photographer and his wife, brought together by a mutual friend who noticed the similarity in the subject matter and treatment of our images. By strange coincidence, Marcello and Erminia were in Oxford, so it was a good chance to meet face to face. Not knowing anything about our backgrounds, the talk was about art and photography, travel and holidays...

....a bus ride and short train journey later, we were at a beer festival in Islip, meeting up with friends with a mutual history that goes back decades and (in the case of one couple) a shared experience of one partner being diagnosed with cancer and going through chemotherapy. Not surprisingly, the conversation was dominated by different matters - what had happened since we last met up, children and mutual friends, health and well being.....

All in all, a well rounded evening in good company - here's to many more!

and today is............?

2011-07-14T11:13:00.000+01:00

This morning I couldn't decide what to wear, so I mentioned to Steve that I would change later before we went out. His response was, "But we aren't going anywhere today!" It soon became apparent that I thought it was Friday and he thought it was Tuesday. By a process of elimination, we eventually worked out that today is, in fact, Thursday. Ho hum.

There have been some recent exchanges between Facebook Meso Warriors about "chemo brain" - those moments when you loose track of time. However, it's 18 months since Steve's last round of chemo and as far as I know it isn't catching! So I have to put this morning's lapse down to a shared "senior" moment or a side effect of no longer having a working routine......

We had a somewhat bizarre experience yesterday. Going into the city centre to take part in a walkabout quiz, we stumble upon the crew filming a new episode of "Lewis" in Ship Street. Sadly, an empty chair labelled Lawrence Fox was the nearest we got to seeing one of the stars of the show. But what was on TV when we returned home after the quiz ? You guessed it. Lewis and Hathaway (aka actors Kevin Whatley and Laurence Fox) sleuthing around Oxford, just like we had been earlier that evening, trying to get the answers to the quiz questions. The line between reality and fantasy can feel thin when you live in a city like this.

However, the harsh reality of mesothelioma was brought home yesterday with news that another meso warrior has lost his battle with this deadly disease. Peter lived in Australia with his family wife and two young sons. He was diagnosed with mesothelioma in October 2009, four months after Steve, and died on Tuesday. He was only 54 years old. According to his facebook page, Peter's favourite quote was one of his mum's "Life may not be the party we'd hoped for, but while we are here, we may as well dance"

We will keep dancing, Peter.

pigeons and rabbits

2011-07-12T18:18:00.000+01:00

After living out of a suitcase for periods of time in May and June, we have decided that July is the month to be sociable, have days out and enjoy new experiences.

While Steve watched cricket on Saturday, I met up with former colleagues from my time at the City Council for a drink or two in Oxford. Very pleasant and enjoyable it was too, picking up where I last left off with some of them, nearly a decade ago.

There's more socializing on the agenda this weekend, including a face-to-face meeting with people we have only communicated with electronically up to now. More of that in a future blog!

Today was the day for a new experience. Well, nearly new. The last time either of us had picked up anything resembling a gun was back in our Lazer Quest days, when we used to run around a stage set in the dark as "Scarecrow" and "LA", surrounded by the electronic beep beep beep of someone (or ourselves) being hit by a shaft of green light. Prior to that, Steve had tried his hand at the fairground rifle range and played with an air rifle as a boy, and I used to play with Jack's pop gun, which made a great sound as the cork popped out of the barrel attached to a bit of string. All great fun, but nothing to prepare us for today when we had our first shooting lesson, a birthday present for Steve courtesy of Jon and Sally.

It has taken us a while to get round to booking it. In truth, I think we were both scared of looking like complete idiots in public (no hiding in the dark behind the props like I used to do in Lazer Quest....) I admit I did not feel comfortable about shooting with a real gun - too many nasty associations. However, we finally plucked up courage and went this afternoon.

Steve was more at ease than me as we were taken to the gun room, given our rifles - a 12 bore for me and a 20 bore for Steve - shown how to stand, hold the gun and instructions on how to hit a moving target, in particular staying focussed on the clay rather than squinting at the end of the barrel. Then, kitted out with caps, protective glasses and earplugs, we headed off to the shooting ground to see what happened when we tried to put what we had learnt into practice.

At the first stand, the clay simulated a bird emerging from the trees in the middle distance and flying towards us in an arc, going over our heads. To our delight, after much practice and a bit of luck we both managed to hit two clays.

At the next stand, the clay simulated a rabbit running across the ground left to right, before disappearing into the bushes. I thought this might be a bit easier as you could see the hole from which the clay would emerge, but the uneven ground made it bounce unpredictably. Not so easy after all....But good fun nevertheless! I even managed to do better than Steve on this stand.

The hour seemed to fly by. The patience, advice and support of the instructor was second to none. However, it's surprising how tiring it can be to hold up a rifle against your cheek repeatedly for long periods of time when you are not used to it! Not to mention staying focussed on the trajectory of a small orange object as it crosses your field of vision.

Neither of us feel the need to practice on real pigeons and rabbits, but it was a great feeling to hit a clay one!

So, another new experience under the belt and more to look forward to in the next few weeks in between more socializing and days out. Life is good!

What a relief...

2011-07-08T17:38:00.000+01:00

And the good news is that six days after she broke the bones in her right hand, our daughter Katie has now had an operation to wire them back together and should be out of hospital later today or tomorrow. What a relief! A friend pointed out to me that young people heal more quickly than people of our advancing years, so let's hope the wiring is successful and that she will have full use of her hand in six weeks time, if not sooner.

We are looking forward to seeing her here in Oxford for a few days at the end of the month, to help me celebrate my birthday. Between then and now we have some first time experiences lined up for ourselves. If you want to know what new tricks we've been up to, drop by later next week ......:-)

our friends (and family) in the north

2011-07-06T13:35:00.003+01:00

In the last week or so, we've been traveling round the compass: south to Bilbao, west to Bristol and most recently north to Manchester, where we visited our daughter Katie and partner George who recently moved into a flat near the city centre.

Traveling north gave us the perfect excuse (not that we needed one) to visit friends Andy and Dave in New Mills and enjoy the Peak District scenery en route. The plan had been to arrive in time for a walk before dinner. However, we were distracted by our first meeting with grandson Louie, followed by a wonderful meal on the terrace then a taster of the photos Andy and Dave had taken on a recent trip to the far east....and - you guessed it - we didn't get further than the sofa in the sitting room, where we enjoyed catching up with each others' news from the last 11 months. A good night's sleep and a hearty breakfast set us up for the short drive on to Manchester the next day. Thanks so much Andy and Dave!

After checking into the hotel at Salford Quays, I phoned Katie to talk about meeting up, only to hear the rather alarming news that she had tripped up at home and was in hospital waiting to have her broken hand put in a temporary plaster, pending an operation to wire the bones back together together. However, she was confident that she would be OK later, so we arranged meet up that evening at the flat, before going out for a meal.

Trying hard not to worry, we set out to explore Salford Quays - starting with lunch at the Lowry arts venue, a strange but exciting building where the steel clad exterior conceals vibrant colours inside.

In the afternoon, we crossed the bridge to the Imperial War Museum North - another eye catching building with fascinating displays about how war shapes lives. We left it too late to take the lift to the top of the "air shard" to look over the quays, so that went on the to do list for later!

A quick turn around at the hotel, then a taxi to Katie and George's flat and a walk to the restaurant introduced us to other parts of Manchester. In spite of the trauma and the pain killers beginning to wear off, Katie was in good spirits and managed to eat her meal mainly left-handed! The downside is that with her right hand in plaster, she has problems writing and typing so it looks like the job interviews lined up will have to be cancelled.

We arranged to meet up again on Sunday afternoon, which left us the morning free to explore the Quays further. So it was back to the War Museum and up the air shaft for a bird's eye view of the area, then over the bridge to Media City where the BBC is in the process of setting up its new HQ.

As we pressed our noses up against the window to see what was going on inside, a chap came out and invited us in - it was an open day. So that's how Steve got to hang around the CBBC set

and I had a close encounter with a dalek who had last acted with David Tennant's incarnation of Dr Who!

Back into the city centre in the afternoon, and a trip on the big wheel with Katie and George, followed by drinks in the Manchester International Festival pavilion and a walk round the Spinningfields area, where the crowds were out watching the mens' singles final at Wimbledon on the big screen on the green.

After a hectic day, it was time for us to recoup with a quiet meal together back at Saford Quays in the evening, where we sat outside watching the comings and goings at the Lowry, glowing gently (well, I didn't think to take sunscreen to Manchester......)

Before leaving on Tuesday morning, we went back to Katie's and helped her get some heavy shopping in - not easy to do when you are literally single-handed. Still no news from the hospital about when she will be operated on. Soon we hope. We are on call, should she need extra support.

We traveled back to Oxford via Shugborough Hall, the ancestral home of the Lichfields and had lunch in the company of the royal family photos taken by Patrick Lichfield.

And so ended our trip to visit family and friends in the north. No doubt we will be back again soon. Good news awaited us at home. Son Jack has been offered and accepted a new job at the Infrastructure Planning Commission which ought to be much more satisfying than the role he's in at the moment. And one of my images has been bought by the 03 Gallery to add to their permanent collection. Nice one!

Thinking of Heather on Action Mesothelioma Day

2011-07-01T09:51:00.001+01:00

Having gone south to Bilbao last weekend, we went west yesterday to Bristol to visit Steve's mum on her birthday and say a quick hello to our son Jack and other members of the family who were just leaving as we arrivedl! On the way home, we dropped into the private view of the Coast exhibition at the Cornerstone Gallery, Didcot, where we both have work on show....so, a busy day all round!

Before heading off in a different direction, I wanted to write briefly about Action Day Mesothelioma, which is today. There are events happening all over the UK to raise awareness of the disease and the dangers of asbestos, and to remember those victims lost to the disease. Sadly my attempt to get something into the local press seems to have fallen on deaf ears. No one has been in touch in response to my e-mail about the Action Day, so I assume nothing will appear in the local papers. Shame on you Oxford Mail and Times, if that's the case! Next year, I think I'll have to stage an event to capture attention......If nothing else, please watch the Asbestos in Schools video made for Action Mesothelioma Day (link under Watch, on the right)

The upbeat mood since Steve's last hospital assessment two weeks ago took a bit of a knock yesterday evening, when I learned that another meso warrior has died. We didn't know Alan, but his wife Heather was the first person to respond to me online when I poured out my feelings on the Macmillan Cancer Support website, shortly after Steve was diagnosed with mesothelioma. She was also the first face to emerge from a crowd of strangers to greet us at the Mesothelioma Conference in London last October. You have been so ready to support others, Heather. If you are reading this, please let us know if there's anything we can do to support you now, other than sending you our love and heartfelt condolences for your loss.

there and back again

2011-06-29T20:36:00.002+01:00

In the last week we have been there and back again twice!

There first "there" was the Cornerstone Gallery to deliver our prints for the Coast exhibition, which opens this weekend, only to be informed that we needed different fixings. So back home we went, via Habitat to buy new frames suitable for the gallery's fixing requirements. Instead of making more progress on the spring cleaning, we had to reframe eight pictures and return to the gallery that evening to deliver them.

Our reward for catching up with the spring cleaning the following day was a long weekend in Bilbao, northern Spain. We flew out Saturday afternoon, and by 10 pm that night were getting into the swing of things by sampling beers and "pinchos" (the Basque version of tapas) in several bars in the old town, a downhill walk from the hotel where we were staying.

Sunday saw us at the Guggenheim Gallery - the most amazing building, both inside and out.

We spent most of the day there, having lunch out and returned again in the evening after a short siesta to take some photos during the "golden hour" before sunset.

So carried away were we, that we didn't notice time passing until it was too late. The metro gates were locked firmly by the time we arrived and the prospect of a long walk back up steep hills wasn't very appealing, so we splashed out on a taxi back to the hotel and fell into bed, exhausted!

We ventured further afield on Monday, out to the dock area to see the Puente Colgante - Bilbao's world heritage transporter bridge. The high level walkway was closed, but the gondola transporting people and vehicles backwards and forwards across the river like clockwork every 8 minutes was working, so we crossed the waters, suspended by wires from a structure which looks something like Tower Bridge In London.

That set the theme for the rest of the day, crossing other bridges with increasingly regular stops for food and drinks as the temperature rose steadily to 42 degrees C, before the storm clouds gathered late afternoon and brought some relief. We ended up back in the Old Town in the evening for beers and pinchos, and then reluctantly tore ourselves away to return to the hotel.

The journey back yesterday went smoothly, with only a short delay while the aircraft circled London in a stack - it took much longer to get through passport control once we landed. However, our bus tickets home were valid for 24 hours after the time booked so no problem getting back to Oxford.

Some nice surprises we waiting for us at home - lots of people had been in touch because they seen my image "hot dogs" which had been featured in the Guardian Weekend magazine on the day we travelled out to Spain - click the link to see the online version! Guardian Weekend magazine 24 June There was also an e-mail to say that another image had been selected for the Association of Photographers (AOP) Open Awards, which opens in October.

But that's looking too far ahead into the future....we have more enjoyable things lined up this coming weekend, with more "there and back again" visits to family and friends. Come back next week to find out what we've been up to!

away with the cobwebs

2011-06-22T12:34:00.001+01:00

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

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

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

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

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

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

Two years since diagnosis and the doctor said....

2011-06-16T11:49:00.000+01:00

.......Well, the doctor didn't have to say anything at this morning's hospital assessment. His smiling face said it all! No noticeable disease progression since the last assessment. Steve's chest sounds good. The cough which he has had on and off over the last couple months has not caused any damage to the pleura which are still firmly stuck together, and there's no sign of any fluid build up.

Because it's now been two years since Steve's diagnosis, Dr T had looked back through all the previous X-rays to see the bigger picture. Comparing today's X-ray with the very first on record, it is evident that there has been a very, very slight progression in the disease over the last 24 months. However, the change is so small as to be imperceptible when looking sequentially at the X-rays taken at three monthly intervals. Because the tumour growth is extremely slow, it is not giving them cause for concern and certainly not something that would trigger a further course of chemo. So, Steve's been signed off for another three months - next assessment in mid-September.

This reminder (as if we needed one) that Steve is living with a time bomb inside him which could go off at any moment, is the trigger to start looking ahead and making plans for the summer. Don't be surprised if we get in touch with you over the next few months to arrange a meet up or a stopover.

The next week or so is (in theory) to be dedicated to giving the house and garden a bit of TLC. If we don't do the spring cleaning soon, our house will look like Quentin Crisp's apartment in New York which he famously never cleaned, remarking "after four years, you don't notice the dust"

Thereafter, look out world - we'll on the move again while Leo is still sleeping!

Come together

2011-06-15T23:18:00.001+01:00

A few days ago, we decided to spend last night in Bath so we would be there bright and early this morning, ready for our ARPS (Associate of the Royal Photographic Society) assessments. Having booked a last minute B&B near the RPS headquarters, it then occurred to us that this would be great opportunity to meet up with Geoff and Irene, friends who live relatively close to Bath. The last time we saw them was at Andrew's funeral, so we thought it would be good to get together in less sad circumstances. A couple of phone calls later and it was all sorted out.

Yesterday morning, I checked my e-mails and there was one from another friend, Anne, who lives in Chichester. By one of those amazing coincidences, Anne and Colin would also be in Bath on Tuesday (them to sample the delights of the Spa as a Anne's birthday treat) so more arrangements were put in place to meet up that later that day.

And so it was yesterday evening that instead of sitting in our B&B getting stressed out about today's photography assessment, we were out having a meal out on a roof terrace of a restaurant in Bath with Geoff and Irene, joined later by Anne and Colin after their visit to the Thermae Bath Spa. And an excellent evening out it was too - great to see you all!

Isn't it wonderful when things come together?

So relaxed were we arriving back at the guest house late last night, I didn't notice that the traveling alarm clock was set on European time rather than BST, following our trip to Venice. Consequently, it was a bit of a shock this morning to be woken up by Steve saying it's nearly half past eight, when it wasn't quite 7.30 am according to the alarm clock. I think that must have been the quickest breakfast and pack up in history! But we weren't the last to arrive at the RPS HQ, a short walk down the road.

It was a tense morning, watching as panels of photos were displayed and assessed by the judges, not knowing whether one of ours would be up next. We were still on tenterhooks at lunchtime. By then, 13 panels had been assessed and only four recommended for ARPS. The first two panels after lunch failed. Mine was the 16th. The wait seemed like an eternity, but the first judge to speak after looking at the pictures thought it was a lovely set that ticked all the boxes, and everyone else thought likewise. So that was me - done! Then we had to wait for Steve's to be brought into the gallery and put on display. Set 17 failed. Set 18 was recommended for ARPS, set 19 failed as did set 20. Set 21 was a pass, on balance. The set after that was Steve's.

If you have seen Steve's recent artworks, you won't be surprised to know that he has created a very individual style - the end result is a cross between photography and silkscreen. What would the panel make of it?

The first judge to speak started by saying he didn't know whether he liked the images or not, the treatment was so different to anything else he had seen. However, the more he looked at them, the more he appreciated them, and if he were locked in a room with them for any length of time, he thought he would end up liking them.

The second judge who spoke was very positive - he liked Steve's images very much, thought they were a great set and wanted to know how Steve had achieved his effects. Then, to our dismay, judge No 3 said the panel didn't work for him - not keen on the technique used to create the images. He was swiftly counteracted by judge No 4, who said in no uncertain terms that the panel DID work - the processing technique added a certain something and was very original. She thought the body of work showed skilled image design and that they should focus on the end result, not the technique of how it was achieved. Judge No 5 was equally supportive - he thought the technique used added to rather than detracted from the images.

After the discussion, each judge had to decide whether or not to support the submission by showing a red or green card to the chairman. We couldn't see what was going on, so again, it seemed like an eternity as the chair of the panel looked along then line of assessors......And then our hearts lifted as his face broke into a smile to announce that Steve would also be recommended for RPS Associateship!

By the end of the day, 23 panels of images had been assessed, but only 8 were recommended for the ARPS distinction, including both of ours!

Even the rush hour traffic in Bath couldn't wipe the smiles off our faces on the way home. We bought a bottle of Prosecco and a fish and chip supper on the way home and we are still grinning like the cats who got the proverbial cream.

Let's hope this is a good omen for the hospital assessment tomorrow - exactly two years after Steve was diagnosed with mesothelioma.

photography and more photography to distract us

2011-06-09T19:01:00.000+01:00

It's less than a week until we have our photographs assessed at the Royal Photographic Society (RPS) HQ in Bath to find whether the Visual Art Panel thinks we're good enough to be made up to Associates. Easier said than done, as we know from experience. As with all things where subjectivity plays a large part in the outcome, it's a bit of a lottery.

We've been selecting, printing, in some cases re-printing, and mounting photographs for the last few days, but will probably be tinkering about with the panels right up to the last minute. It's feels just like being a student again, getting ready for a project "crit" - quite nerve racking trying to second guess how someone else will react to the fruits of our labours.

However, the photography spirit has been lifted by two bits of good news. We've both had work accepted for a exhibition in a local gallery on the theme Coast which opens on 1 July and runs right through until the middle of August.

One of the images which will be shown in the Coast exhibition is currently on tour in the RPS Members Exhibition and was used the local press under to promote the exhibition opening in Watford under the banner headline Prestigious_exhibition_comes_to_Watford (click to read the article) What a nice surprise - especially as the Kite Fliers forms part of my RPS panel which is going to be assessed in Bath next week!

All this photography stuff is a distraction from the BIG event of next week - Steve's hospital assessment on 16 June, exactly two years after he was diagnosed with mesothelioma. As always, it's a worrying time not knowing what they will find when they look inside his body. He's still feeling good. We're hoping that the coughing episodes he's had on and off since the last assessment in March have been related to hay fever, rather than a sign of Leo the meso stirring. Keep your fingers crossed.

and another first for us

2011-06-05T18:36:00.003+01:00

One of the joys of not having work commitments is that we can take decisions about what to do on the spur of the moment (the downside being that any preparation necessary has to be fitted in at the last minute!) And so it was that last Thursday morning, we decided to go out for a day at the races - a new experience for us. And not just any old horse race, but to see the Derby at Epsom Downs on Saturday! We were literally just in time to book grandstand tickets online before the noon deadline.

In between doing the weekly food shop, collecting prints from the Artspool exhibition on Friday morning and going to the private view of the horti-CULTURE exhibition Friday evening, we managed to get ourselves scrubbed up and sorted out our glad rags, ready for the big day.

Although our arrival at the racecourse was delayed by traffic congestion, once we parked up and got out of the car, the excitement in the air was palpable. People all dressed up and lots of laughter lifted the spirits as we made our way into the grandstand enclosure from where we could look out over the downs, the lines of open-topped busses and fun fair on the hill, and crowds and crowds of people enjoying themselves in the sunshine.

The grandstand overlooks the last half furlong of the racetrack, rising up to the finishing post with good views of the big screens to see the distant action on the far side of the course.

We'd had our lunch and had moved on to a Pimms by the time the Royal party arrived and disgorged into the Queens Stand next door and the races were ready to begin.

The roar of the crowd was almost deafening as the riders approached the finishing line, culminating in the cheers and squeals from those whose horses had won or been placed.

We left the vantage point of the grandstand and went off the explore, looking in at the parade ring and ending up right next to the rails to watch the next race. Steve fancied one of the horses, placed a bet at the last minute and to our delight the chosen horse came up trumps. Time for another Pimms to celebrate!

No such such luck on the Derby itself, or the other race we had a bet on, but we still ended up taking a whole £10 from the bookies overall.

We finished off the afternoon with tea and strawberry tarts before heading back to the car, tired but happy! Our fears of getting caught in horrendous traffic jams proved unfounded, and we had a good journey home arriving back just in time for a rendezvous with Dr Who. What a good day!

"What remains of us is love"

2011-06-02T23:59:00.001+01:00

The title of today's blog is taken from the Order of Service at Andrew's funeral yesterday. And there was much love shared as we remembered and celebrated Andrew's life, and shed tears for our lost friend. He will be sorely missed but I think he would have been touched to see so many family and friends present - standing room only inside the cemetery building and the overflow spilling outside, peering in through the porch to listen to the tributes and take part in the moments of contemplation.

The mood lightened a little as we gathered in a nearby pub after the interment to swap stories and reminisce, catch up with each other's news and admire the amazing cake made by Andrew's daughter Susie - a model of a skip, adorned with Andrew's name and overflowing with bits and pieces that would have brought out the magpie instinct in Andrew, had he been there in person to see it. But the brilliantly apt work of art was not to last long - it was carved up and served alongside other cakes and tea (and prosecco for those not driving) back at the house, where close friends lingered till late, still numbed by the unexpected loss of our contemporary.

For Andrew

I said in an earlier blog that given Steve's diagnosis, I thought I would be the first to be widowed in our circle of friends and that Andrew would be there at Steve's funeral. We are still finding it difficult to come to terms with the events of the last fortnight. Our hearts go out to Jan his wife, Susie and Charlie his children, Katie his sister and Edna, his amazing 92 year old mum. You were all so brave and so dignified. I only hope that I can follow your example when I stand in your shoes.

Andrew's unexpected and untimely death reinforces the unpredictability and fragility of life. All we can hope to do is leave the world a better place when we're gone and make the most of life while we can. The first bit is not easy, but we do our best to make our small contribution. We are getting better at the second bit - living life to the full. We've just arranged another first time experience for us this weekend. Drop back next week if you want to find out what we've been up to!

In the meantime, if you are in or close to Oxford tomorrow evening, please join us at the private view of the horti-CULTURE exhibition at the 03 Gallery, Oxford Castle!