Friday, 30 March 2012

Friends reunited

This week has been dominated by blue skies and reunions with old friends - who could ask for anything more?

Tuesday saw us in Bristol, where we spent an afternoon enjoying the exhibitions at the Royal West of England Academy and having a mini-picnic beside the River Avon before meeting up with friends for a drink and meal in the evening.  It's now ten years since our intake joined the Planning Inspectorate, and one year since two of our group left, so about time for a get together to catch up on each others news.  Several people remarked on how well Steve is looking, which was very reassuring.  Thanks everyone for a lovely evening!  

Wednesday saw us back at Bristol harbour, this time visiting the M-shed to see an exhibition of Norman Parkinson's fashion photography from the sixties - as well as some examples of Bristol fashions from that era - fascinating stuff!  We took the opportunity to admire the stunning views from the roof terrace and have lunch in the cafe before heading back to the car and home to Oxford.

Another reunion on Thursday and another roof terrace under blue skies - this time meeting up with our friends Ian and Ruth for lunch outside at the Ashmolean Dining Room. Very delicious; very filling. No room for an evening meal!  

As well as being reunited with friends in the real world this week, a lot has happened to our virtual friends in the mesothelioma community, with both good news and not-so good news...

In a landmark ruling, the Supreme Court has ruled that insurance liability for negligence resulting in exposure to asbestos and subsequent diagnosis of mesothelioma is "triggered" when the victim was exposed to asbestos dust, rather than when symptoms develop, which is usually decades later.  This means that thousands of mesothelioma sufferers will now be able to claim compensation from those responsible for exposing them to asbestos fibres without adequate protection and safeguards, where the insurance policy wording required injury to be "sustained" or "contracted" during the period of insurance.  

A victory for common sense.  Thank you, Supreme Court judges.  Your decision won't help us as we have been unable to prove, on the balance of probabilities, where Steve was exposed to the asbestos dust which caused his disease. However, it will help many others.  Compensation doesn't cure mesothelioma, but at least it will help address the financial concerns arising from such a diagnosis.

Also on the good news front, meso warrior Debbie Brewer has landed safely in America, where she will be presented with an award for her work raising awareness of the disease and her support for others.  Well done Debbie and well deserved! 

We were delighted to hear that Tess's disease is still stable after another regime of chemo as part of the NGR-hTNF drug trial - excellent news Tess and long may it last!  

Amanda and her partner Ray are enjoying spring, without the need to resort to pain killers, which is great :-)

On the down side, Mavis in Kent has been taken off chemo as her body can no longer handle the side effects.  She has been told to think in terms of quality rather than quantity of life.  I know that she will make the most of every minute with husband Ray and Louis the dog.  Thinking of you Mavis and sending lots of hugs and positive energy.  

Our other meso friend Jan is having a very hard time dealing with pain and the frustration of not being able to convince her specialists that cryo-ablation - using very cold temperatures to injure cancer cells - which has worked for her in the past after treatment in the USA is worth trying in the UK.  I wish I had a magic wand to take away the pain and could send that knight in shining armour with a cure. Sending our love to help you keep fighting Jan.

Monday, 26 March 2012

Spring forward, with the odd stumble....

Do you ever have those times when inanimate objects start causing problems?  We've just had one of those weeks - window blinds fall down; camera lens stops working; boiler won't switch off, then won't switch on; unable to transfer applications, mail and documents between computers - all rather annoying.  However, inanimate objects can be repaired and replaced and most of last weeks little stumbling blocks have now been removed, or in the process of being sorted out.  Wouldn't it be wonderful if we could fix people in the same way, especially those with an incurable disease.  One day, I hope......

Spring has well and truly arrived (summer almost!) in Oxford. Our poor neglected garden is blooming; birds are nesting and so are people in the street - seven builders vans in the street last week as Henry Road residents feather their own nests.

After the exertions of our trip to London the previous weekend, we having been taking it easy over the last week, especially as Steve has had a bit of a cough (or perhaps it's the hay fever starting early, with the warm weather?) However, he felt well enough to socialise by Saturday, so we enjoyed a meal out that evening (quite literally, outside) with our friends Ian and Ruth, eating our tapas while watching the Compagnie Retouramont perform Danse des Cariatides on the walls of Malmaison Hotel, Oxford Castle and above our heads in the square. If they perform near you, catch them if you can!

More social get-togethers planned for this week, which will help balance out the time I've put into preparing for my first Tribunal hearings in Guernsey next week and work on the photography front which we must progress, with a deadline looming in early April.  We'll be busy bees - but that's how it should be now that spring has well and truly sprung!

Tuesday, 20 March 2012

A weekend of secrets revealed

As it's only an hour or so by train from Oxford, our visits to London are usually day trips.  Trying to cram a lot in to one day means that we get home late and tired.  For Steve's birthday treat, I thought it would be a good idea to stay over and do things at a more relaxed pace.  So that's what we did last weekend. 

Our Last Minute "Top Secret" hotel deal was revealed as The Cumberland Hotel, Marble Arch.

Steve photographing the artwork, Cumberland Hotel lobby
Perfectly placed for the express bus stop from Oxford and within walking distance of the theatre where we had tickets for the matinee performance of Agatha Christie's The Mouse Trap, the world's longest running play.  

We treated ourselves to lunch on Saturday at Rhodes W1 brasserie in the hotel, and walked from there to the theatre. It was a bit further than we had anticipated and, with hindsight, we should have allowed more time.  As a result, we were both puffing by the time we arrived, but were in our seats before the curtain went up.  We enjoyed the murder mystery, a play very much of its time and acted accordingly.  Steve had worked out the identity of murderer by the third act - I waited to the reveal at the end! However, although we now know who did it, we're sworn to secrecy, so that one thing I won't reveal.  

We spent the evening at Tate Modern, with drinks and nibbles in the Members Room followed by a visit to the Alighiero Boetti exhibition.  I confess, he's not someone we had heard of before, but the more we saw, the more we were drawn in by his work and approach to art. Back at the hotel, Steve was delighted to see the final score in the England-Ireland Six Nations rugby match.  I think he has forgiven me for organizing a weekend away at such a critical time in the rugby calender.  At least he knew he would enjoy watching the recording of the match back at home!

After a good night's sleep (ah, the joy of not having to travel back to Oxford late at night!) we set off on Sunday morning for a quick photo session at the new concourse, King Cross (below), before heading off east to Stratford for another exhibition.  

Kings Cross new concourse roof

This time it was "Golden Greats" a collection of photographs by Drew Gardner and Lucinda Marland which captured all the British sportsmen and women over 60 years old who had won Olympic gold medals.  Fascinating images and stories.  

The exhibition venue in the John Lewis store at Westfield overlooked the Olympic site and that's where we headed off to after lunch, walking around the perimeter with good views of the main stadium, the aquatics centre, the water polo arena and Anish Kapoor's Orbit, a 115m high observation tower at the heart of the park.  Can't wait to go up it, when it's finished and open to the public!  

Aquatics Centre

Main Olympic Stadium

Orbit observation tower

The walk took us round the southern perimeter of the site, ending up at the "View Tube" on the Green Way, part of the Capitol Ring long distance footpath.  From there, it was a short walk to the Pudding Mill Lane DLR stop and back to Marble Arch to collect our case from the hotel and hop on the bus home.  

So that marks the end of Steve's 65th birthday celebrations. Life will resume a more normal pace for the next few weeks, while we sort out arrangements for special things to do in April, May and June before Steve's next hospital assessment.  However, today the sky is blue, the clematis is flowering in the garden, and there are two large vases of Mother's Day flowers brightening up the front room - lots of small things to take pleasure in on a day-to-day basis.  

Sometimes, I feel guilty writing about the good times we are having, when so many others are less fortunate. However, I'm told that it helps others to know there is hope (and a life after chemo) even when you've had a mesothelioma diagnosis, so I guess I'll just carry on writing and send our love to all to meso warriors, their families and friends who are having tough times at present.  

Thursday, 15 March 2012

the long wait....

After yesterday's afternoon sunshine, today dawned grey and misty. Steve was wide awake by 6.30 am, up and sorting out some money matters before my eyes were properly open. Even so, we left the house later than planned and crawled most of the way to the hospital in the morning traffic jams. Not the best start to Steve's assessment day.  

However, there were spaces in the hospital car park; the X-ray was taken quickly; we arrived at the day clinic well before for his 9:40 appointment and were called in to see the doctor bang on time.  Our spirits lifted a little as we were told we would be seeing Dr Church the registrar, rather than the consultant.  If it was bad news, surely Dr Talbot would be the one to break it to us himself....

However, as time passed we became increasingly anxious, sitting alone in the consultation room - five minutes, no doctor....ten minutes no doctor...fifteen minutes later, still no doctor....oh dear, I thought, the registrar has spotted something ominous on the X-ray and is waiting for advice from the consultant about how to break it to us and what to do next.... 

And then.  At last.  Dr Church appeared smiling, accompanied by a student doctor, and asked whether Steve minded her observing.  My mind flew back to the first appointment I had attended with Steve post-diagnosis in 2009, where the consultant was being shadowed by a teenager on work experience and how I had fought hard to hold back the tears as we broached the subject of prognosis.

But today the atmosphere was different, thank goodness. After first asking Steve how he felt, the doctor didn't keep us waiting on tenterhooks any longer.  There was no sign of any change on the X-ray, the mesothelioma still appeared to be stable.  The physical examination by both doctor and student revealed nothing untoward and as Steve still feels good, he's be signed off for another three months!  No need to go back to hospital until 14 June, unless he experiences any problems in the mean time.  

So here we are, with big smiles on our faces, thinking about what we would like to do in the next three months which will include another big milestone - our Ruby wedding anniversary on 1 May.  

Tomorrow it will be exactly two years and nine months since Steve was diagnosed with mesothelioma and he's still going strong.  Woohoo!

Wednesday, 14 March 2012

softly, softly....

The softly, softly approach of keeping ourselves fully occupied in the run up to Steve's next assessment seems to have worked.  Up until now, there has been no time to dwell on what may or may not happen tomorrow.  

A quick turnaround last Saturday after my short break in Liverpool and we were off again on Sunday, this time to Bristol.  We have been staying with our son Jack for the last few days to provide practical help and a bit of moral support while he recovers from dental surgery which was carried out on Monday morning.  For the first 24 hours or so after the operation, we had to be "responsible" adults to keep an eye on him while the side effects of sedation and the anesthetic wore off.  Being able to eat normally will take considerably longer; we would probably have stayed in Bristol for a few more days to provide support had it not been for Steve's hospital appointment tomorrow morning.    

We called into the Royal Photographic Society's HQ in Bath on the way home today to deliver the set of prints we are submitting to the 2012 International Print Exhibition (IPE) and to collect another set of prints from the RPS Members Exhibition and last year's IPE which recently finished touring the country. By the time we reached Swindon, the sun had broken through the heavy layer of low cloud and fog, lifting the spirits.  Let's hope its a good omen for tomorrow.

So here we are, the day before the next assessment, still feeling relatively calm at the moment.....By this time tomorrow, we will know what's been going on inside Steve's body and will have a clearer idea of how life will pan out over the next three months and beyond.  Between then and now, there's lots of e-mails to go through and news to catch up, plus a small celebration tonight to mark our daughter Katie's success at passing her driving theory test while we've been away.  

Well done Katie!  

Saturday, 10 March 2012

Keeping busy

It's that time of the year again, with Steve's next hospital assessment almost upon us. After getting very stressed in the run up to the last assessment, we have been keeping ourselves very busy to try and take our minds off what may or may not happen next week.  

After the last guest left on Monday morning following Steve's birthday celebration weekend, we took off to Focus on Imaging at the NEC Birmingham, to look at the latest cameras, stock up on paper for prints, watch an RPS distinction assessment and pick up a print box for a fellow member of the Oxford Photographic Society. All that would have been tiring enough for one day, but although Steve could relax when we got home, I went out again for the last session photographing a local dancer rehearsing for a performance later this week.  

I had previously tried - and failed - to interest Steve in taking another trip away from base in the run up to next week's hospital visit.  However, my friends Chris and Prue stepped into the breach and on Tuesday morning we went off together for short break in Liverpool; the best part of four days crammed full of sight-seeing, culture, catching up on news and enjoying meals out.  

Museums, galleries, cathedrals and walkabouts interspersed by pit stops to refuel.  What a wonderful way to stop dwelling on and getting wound up about next week's hospital visit!  

While I've been away with the girlfriends, back at home, Steve has been printing images for our submissions to the RPS International Print Exhibition which closes next week. Neither of us feels very confident about having work accepted, but if you don't make the effort you will never know....

Back from Liverpool last night, today is a catch up and turn around day for me. There are more things in the pipeline to distract us tomorrow and for the next few days before the crunch of Thursday's trip to the hospital when we'll find out what's been going on inside...

Last year, a conference about mesothelioma in the Midlands highlighted that carers experience more isolation, anger and anxiety than patients. You only have to look at the blogs written by others whose partners have been diagnosed with mesothelioma to appreciate how helpless we feel at times.  In some ways it's reassuring to know that other people in my position feel the same.  Let's hope the distraction of being with someone else next week is enough to keep my mind from dwelling too much on Thursday's assessment.  We shall see.....

Monday, 5 March 2012


When Steve was first diagnosed with mesothelioma back in June 2009, his 65th birthday seemed like a very long way off in the future.  But he's made it!  I imagine that for most people, the idea of being officially "old" is not something to shout about.  But if you have have been living on borrowed time, it's something to celebrate - so that's what we did this weekend.

A meal out with our children on Friday - Steve's birthday - followed by a big family lunch at our house on Saturday, and very enjoyable it was to!  

Well done Steve - 65 years young and another target hit!  

Here's looking forward to the next big target on 1 May when we celebrate our Ruby wedding anniversary :-)