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 :-))

Thursday 3 November 2011

For Ronny

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: 

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