Saturday 31 December 2011

Looking back on 2011

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 :-)

Wednesday 28 December 2011

Flames of Hope and Courage

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

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 :-)

Tuesday 20 December 2011

The Christmas get together

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.  

Friday 16 December 2011

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

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 :-)

Thursday 15 December 2011

Christmas comes early!

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!

Wednesday 14 December 2011

Countdown: 1

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.

Tuesday 13 December 2011

Countdown: 2

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! 

Monday 12 December 2011

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

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?

Saturday 10 December 2011

Countdown: 5

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!

Friday 9 December 2011

Countdown: 6

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?

Thursday 8 December 2011

Countdown 7

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...

Wednesday 7 December 2011

Countdown 8

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?  

Tuesday 6 December 2011

Countdown 9

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....

Monday 5 December 2011

Countdown - 10

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?  

Sunday 4 December 2011

Recipes for an unsilent night and a chatty day

Recipe for an Unsilent Night

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

  • Four generations of one family
  • Christmas shoppers at Ikea
  • 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

  • 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
  • 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

Friday 2 December 2011

Progress and a retrospective

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!

Thursday 1 December 2011

And so it begins.....

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! 

Wednesday 30 November 2011

a day London and our first Christmas card

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!

Monday 28 November 2011

and a step forward!

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!

Saturday 26 November 2011

One step forwards and two steps back

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.....

Monday 21 November 2011

Torn to pieces

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?

Sunday 20 November 2011

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

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.

Wednesday 16 November 2011

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

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!

Tuesday 15 November 2011

Bonjour - we are back from Paris!

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

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.

Saturday 5 November 2011

Life goes on, with barely a pause for breath

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 :-))