an Easter garden party

No, we haven’t been to Buckingham Palace - this garden party took place in Bristol at Steve’s mum’s house.  Over the course of two days, members of the family got together to tame the jungle that has taken over the back garden, cutting back brambles, overgrown shrubs and self-sown ash trees, shredding and bagging the debris.  By the time we had finished, it was possible to see out of the window where Steve’s mum spends most of her time, right down to the end of the garden.  We also managed to do a bit of spring cleaning in the house, socialise with the family, be entertained by Esme, chat to Steve’s mum and to visit Beckford’s Tower outside Bath - so a good job done and a successful weekend all round.

As well as fighting weeds, Steve has been fighting off a cold and seems to be winning, although he is still not fully recovered - he starts and finish the day with bouts of coughing, with the occasional sneeze in between which may be caused by hay fever or dust from the spring cleaning. Although his energy levels are understandably a bit low, he hasn’t lost his appetite or developed flu-like symptoms (which is what happened almost two years ago in Florence, shortly before he was diagnosed with mesothelioma on his return home).  


Although Royal Wedding fever seems to be gripping the country, we will shortly be celebrating something much more important for us - our 39th wedding anniversary on Mayday.  We have something special planned, but if you want to know what it is you will have to come back and read the next blog!

Hot and cold

Steve’s throat infection has turned into a common cold - how frustrating is that when the weather is so warm?  The cold itself is not a big issue - we all get them. But when you have mesothelioma and have undergone pleurodesis (the “talc” op which sticks the pleura back together after fluid has been drained from the space in between) there is always a nagging worry that a big cough will undo the glue, open up the gap and allow fluid to build up again…..And the thought is always there in the back of your mind - what if this cough isn’t a result of a common cold virus, but the meso flaring up again?


We try to put such thoughts to the back of our minds and concentrate on Easter joys - hot cross buns for breakfast this morning, choosing easter eggs for Esme and Zac our great neice and great nephew, looking forward to meeting up with the wider family in Bristol over the weekend and enjoying the wonderful weather. 


We have more things to look forward to next week. Between then and now, I hope to tick off a few more jobs on the to do list, if I can resist the temptation to sit in the garden with a good book - one of the things I was looking forward to doing after finishing work, but have yet to have the time to indulge!

a day of frustrations

Bar the occasional sniffle which hasn’t developed into anything, Steve has been very fortunate not to have come down with coughs, colds or flu since he was diagnosed with mesothelioma in June 2009.  Until yesterday, that is.  


He noticed his throat was feeling prickly as we walked into town in the morning, but thought it might have been caused by a bit of breakfast cereal.  However, by the end of the day, his voice was deep and croaky; he most definitely has a throat infection. Whether it develops into anything else, or whether all the things he has been taking to help boost his immune system will knock the infection back before it develops into anything more serious - in particular a bad cough - remains to be seen. We are still hoping to meet up with the wider family in Bristol over the Easter weekend, especially as the weather looks good, but will see how he feels over the next few days before making a decision.  


Yesterday was also frustrating for more mundane reasons. We went into town on a mission to sort out some financial matters, but didn’t have all the documents needed to complete the first objective at Building Society No 1. An online systems failure at Building Society No 2 prevented us from achieving our second objective.  The bank where we had hoped to sort out our third objective was closed for refurbishment and the nearest branch a good hike away in the wrong direction. So the main mission was a complete failure. 


However, we did return with a new cafetiere to replace the broken filter machine and fresh coffee, so enjoyed a good cup of coffee with lunch, which cheered us up - helped along by sunshine and blue skies!  Listening to the news on the radio this morning and reading about the hardships and suffering of others puts our day of frustration into perspective.  A mere blip in otherwise very enjoyable lives, in spite of the ever present spectre of mesothelioma.

DIY SOS

Well, perhaps SOS is a bit OTT - it wasn’t an emergency, but we have been fully occupied with DIY for the last few days….Not at home, but in Bristol where we have been helping son Jack with painting and decorating, flat pack furniture assembly and fixing, decisions about flooring and providing a sherpa service to transport heavy items.  Fit and strong as Jack is, there are still some things that need more that one pair of hands to construct and fix, or more than two wheels to transport.  We were happy to provide support in both respects.  In return, Jack will help with DIY at our house sometime later this year.


We’ll be back in Bristol again very soon for a Wride family get together to spring clean Steve’s mum’s house and cut back/tidy up the garden…..I wonder whether we can persuade everyone to come back here and do the same at our house.  We’ve been out and about and staying away from home so much these last few weeks, that only basic jobs have been done in addition to packing, unpacking and repacking.  


A friend asked whether I was enjoying putting my feet up now I’m “retired” which made me laugh - our feet have hardly touched the ground since the end of March and it looks like life will carry on at a similar pace for the rest of April, most of May and up to mid-June when Steve has his next assessment. However, although I finished work nearly three weeks ago, there is still paperwork to deal with. Amongst the letters waiting for us at home last night was one from my occupational pension scheme confirming that my pension and voluntary early leaving compensation benefits have been authorised - which is great, except that they have made a mistake about the date of my last day of service. Ho hum - another thing to sort out…..


With no word from Steve’s legal team, the jury’s still out on whether the damages case will go forward as planned in early September or will be withdrawn.  Not much point in getting stressed about it in either event.  I know we have done everything we can in terms of going through the evidence with a fine tooth comb to highlight all the records of asbestos in the building where we believe Steve was exposed whilst doing some demolition work as a student.  


In fact, the last systematic review of all the disclosed documents revealed that asbestos insulation board (AIB) was used under all the windows in the building in question. Although now sealed/encapsulated to minimize the risk of fibres being released through accidental damage, this safety measure was not put in place until 2002, long after Steve’s six years as a student in these rooms with exposed AIB panels. School children, teachers and support staff have developed mesothelioma through exposure in similar circumstances.  Perhaps we should consider making a damages claim on that basis, if the current case is withdrawn….


No matter, the sun is shining and it’s a special weekend for two dear friends - Happy birthday Sally for today and Ian for Monday - enjoy your celebrations!

hot hot hot

Paint the sky blue, switch on the sun and turn up the thermostat - what a wonderful weekend!  


The world came out to play in the brilliant weather and what nicer way to spend it than with friends - a late and very long lunch and leisurely with Jon, Sally and Gina in their garden on Saturday afternoon, great food and wine and company as ever - thank you!  This afternoon we treated ourselves to a National Trust tea with Ian and Ruth at Greys Court.  They earned their chocolate cake by cycling over the Chilterns from Goring station to get there.  I’m afraid we took the easy route by car….Well done you two!  


As the evening wore on, the sun was still shining in the New Theatre where we thoroughly enjoyed the warmth, excitement and energy of a Buena Vista Social Club live performance.  One of those rare occasions when the audience was on its feet, singing, clapping and dancing - what a good job we’d had that chocolate cake earlier on to keep us going….  


One weekend doesn’t make a summer, but that was a great beginning!  

packing up and packing it all in

Last Thursday was a day of packing up.  We took down and packed up the exhibition from the Gallery at Chipping Norton Theatre, took it home, then packed our bags and headed north to Huddersfield where we spent the evening with Katie, catching up on news and talking about the future over a good meal in one of the town’s friendly Italian restaurants. On Friday we packed up again and moved on to Richmond further north in Yorkshire via the splendid cathedral at Ripon, the awesome ruins of Fountains Abbey and the amazing Studley Royal Water Gardens World Heritage Site.


Helen and Rob’s house in Richmond was our base for the next few days, a great chance to relax with our hosts and friends Anne and Colin.  We caught up on everyone’s news over a meal out on Friday night.  Saturday was a day to see the sights of Richmond on foot, from the walls of the Castle high up on the hill overlooking the town, down into the Swale valley, up to Culloden Tower on the hill opposite, back down the hill then up to the main quare where the market was in full swing.  Three of us did the tour of Richmond’s Georgian Theatre Royal before heading back to the house for lunch.  In the afternoon it was back down the steps to enjoy the white water of the River Swale, over the bridge to the former railway station, now an arts centre, cinema, cafe and specialist shops, followed by a walk along the line of the former railway track and round the river to Easby Abbey before heading back into town.  More food and drink to keep us going in the evening an a hilarious board game which tested our powers of communication to the limit!


On Sunday we set off in heavy showers to Reeth, deeper into Swaledale for a walk in the Yorkshire Dales National Park.  My purchase of waterproof trousers from a local shop did the trick.  No sooner had I put them on than the sun came out and stayed out for the rest of the walk.  We walked along the river, crossed the water and climbed up to Maiden Castle, an iron age fort on the opposite bank, then made our way back to Reeth for a well earned cup of tea and a snack before heading back to Richmond.  

Steve did splendidly well in spite of his creaky knees and compromised lung - not to mention the lack of strenuous exercise over the winter hibernation.  However, the fresh and walking had taken its toll by the evening and we were ready for bed when the time came.


The party broke up after breakfast on Monday, Helen heading off to work in Penryn.  Rob took Colin and Anne back to Leeds to catch the train south and we headed off home via Saltaire where we wandered around the famous Salt Mills and enjoyed looking at the collection of David Hockney paintings, drawings and photos over lunch in Salts Diner.  Thank you so much Helen and Rob, Anne and Colin for such a wonderful long weekend! 


The last few days have passed quickly.  We’ve just about finished unpacking but still have to find a home for the exhibition artwork, bits and bobs.  I’ve been to to the GP surgery to give blood samples - my last blood donation was in a batch which caused one patient to have a severe reaction so it needs to be tested in case there is a problem.  


It’s also been a slog writing a note for the Counsel in Steve’s damages case setting out our views on whether the case should go to trial in the light of the recent sample test results and our expert witness getting cold feet because they didn’t show what he had expected.  The legal team may pull the plug without an expert witness to support the case. We hope they will get a second opinion given all the information in the disclosed documents which identifies over 60 positive samples of four different types of asbestos in the building where we believe Steve was exposed in 1971 when carrying out some demolition work as a student.  However, we shall just have to wait an see what the barrister says.


The good news is that the sun is shining, the weather is warm and we have a good idea of how we would like to celebrate our 39th wedding anniversary on Mayday.  That’s much more important than worrying about a court case that may or may not happen in September.  Carpe Diem as they say!

ups and downs

After a start to the first day of the rest of our lives that lifted the spirits, we were brought back down to earth with a jolt yesterday by the arrival of a letter from the solicitor acting for Steve in his damages claim.  


We weren’t surprised to hear that only one of the six samples tested recently contained asbestos - after all, there has been a comprehensive programme of stripping out the stuff from 1974 onwards.  However, we were surprised that Counsel’s opinion is now being sought on whether to proceed with the case in the light of these samples.  


There are pages and pages of evidence in the disclosed documents identifying all types of asbestos (amosite, crocidolite and chrysotile) which has been found in the building over the years, from insulation board under windows, to asbestos paper lining around pipes and under lagging, to asbestos in the floor tiles and bitumen adhesive..) on the floor where Steve knocked down walls to create an open plan studio, and on lower floors which are identical in construction. 


I spent much of yesterday afternoon going through the disclosed documents again, collating evidence into a readily digestible schedule (the paper work as submitted is a complete shambles). I’ve already itemized over 20 positive samples and there’s loads more worksheets to go through. Why should five negative samples taken in February 2011 weigh more than all the positive samples from the same building taken at the same time and over the intervening years?  


We would like the disclosed documents to be reviewed by a different expert witness who can cast a fresh eye over the evidence.  That said, we are not sure whether we can instruct the solicitor to do this, or whether the legal team can decline such a request.  We’ll just have to wait and see.


However, it wasn’t all negative yesterday. The five large boxes of kit taking up most of the hall were collected in the afternoon, and we spent a wonderful evening with friends which lasted well into the early hours of this morning. Many thanks Ian and Ruth for a great meal and lively conversation!


Today my P45 arrived in the post, along with the last pay slip and other “retirement” card.  Steve said to me, from now on when a stranger asks “what do you do?” how will you reply?  I’ll have to think about that!

another cork for the collection

If you have visited our house you will be familiar with the sight of corks from bottles of fizz in big glass jars which act as bookends on the shelves in the back room. In recent years, the corks have spilt out on to the shelves themselves.  Every cork celebrates a special occasion - birthdays, anniversaries, Christmas, New Years, new jobs, exams passed and so on are recorded for posterity before each new cork joins the others that have been piling up for more than 30 years.  No wonder we are running out of space!


Today, another cork is ready for inscription before going on the shelves.  It’s from the bottle of champagne we drank tonight to mark my “retirement”….or to be more accurate, the start of the next phase of our lives together, unhindered by work programmes and availability commitments. 


No gentle wind down - instead a big effort right to the end. Despite working flat out on Friday, the last report wasn’t finished by the time we left for a get together in the Cotswolds with the people I trained with back in January 2002, plus partners and one small child who delighted everyone! It was a great short break - good food, excellent company, fine weather and a good walk on Saturday to burn off the excesses of the night before. As usual, people were surprised and delighted to see Steve looking so well!  It was quite emotional saying goodbye to everyone at the end of it, but I’m sure we’ll keep in contact after everything we’ve been through together.


Back to reality when we returned home on Sunday, but the report was finally finished on Sunday evening, checked, proof read and submitted this morning leaving the rest of the day to complete the last bits of paperwork, disconnect and pack up the IT equipment, and put documents into boxes ready to be collected tomorrow and returned to the office.  We can hardly get to the front door now for the mass of boxes in the hall.


We had planned to go out for a celebratory meal this evening, but fortunately decided to put it on hold - by the time the packing was finished it was too late and we were too tired to hit the town.  But that’s OK, because we can turn this into an extended celebration instead!  


No alarm tomorrow.  City Link won’t come until 2 pm at the earliest, so we can enjoy a lie in on the first day (if we want to) of the the rest of our lives.  Oh yes!

Steve's "to do" list

We have a rather unusual method of jotting down things to do/buy/remember in our house.  It involves a stick of chalk and writing on the quarry tiles on the kitchen work top.  


I have been too busy working to finish a report to compose a list of what to do AIR (After I Retire).  However, I couldn’t help but notice Steve’s “to do” list on the kitchen work top this evening.  It runs thus:

• Shop (food)
• Wrap (great nephew’s belated birthday present)
• Post (great nephew’s belated birthday present)
• Iran

I did a double take.

Iran?  

Does Steve think he is going to sort out the problems of Iran any time soon?

Have too many crosswords addled his brain and given him delusions of grandeur?

Casually, so as not to raise his suspicions, I asked Steve to explain.  

  

It wasn’t Iran. It was Iron.  

Phew! Back to life, back to reality.  I think I need a break and Steve needs to work harder at his handwriting……..  

AIR is fast approaching, but we’re not quite there yet.  Big effort tomorrow to finish off the last report, and another on Monday (and probably Sunday) to sort out, pack and wrap everything that needs to be returned to the office in Bristol. But in between, we have something to look forward to!  If you want to know what we’ve been getting up to over the weekend, come back next week - AIR!

Post script:  Message for Princess Zac from Dr Who - Sorry, I’ve been caught up in a time warp, but I will be with you shortly to wish you a happy birthday.  

(Don’t worry - that won’t mean anything to you unless you are our niece Heather, or her son Zac!) 

Equinox

We’ve reached the spring equinox…  


…The blossom is coming out on next door’s flowering cherry, there are green shoots all over the garden and spring has most definitely sprung!  


Along with the hours of daylight increasing at the expense of darkness, our life-work balance will be changing very soon now.  


What better way to kick-start spring than beginning the evening with friends at a “Christmas” meal postponed because of the snow in 2010 and finishing with the meal turning into a pre-retirement celebration to mark the next phase of life in 2011?  Thank you Edith, Karen and Ticia for a lovely evening and surprise treat!

It’s three whole months to Steve’s next assessment, and we’re feeling good.  So much to look forward to - I can hardly wait!

suspicious minds and a happy ending under a super moon

For a change, this isn’t about Steve and mesothelioma, me and my soon-to-be-finished job, or photography for that matter.  It’s about Mandy, a lady with special needs and mobility issues, who lives in sheltered housing about half a mile from us. We had not met Mandy until last night, when our evening was interrupted by an unexpected knock on the front door.  


When I opened the door, after apologizing for any inconvenience, a complete stranger explained that a lady was having problems after taking her dog for a walk in the park at the end of our street. He said he had taken the dog home for her, but was having difficulties helping the lady because she couldn’t walk very well and he wasn’t strong enough to support her weight. 


When questioned how we could help, he asked whether I could spare £3.50 for a taxi to take her home.  I admit it, I thought it was a scam - just a way of extracting cash from a gullible stranger.  Although tempted to shut the door on him, instead I called his bluff and offered to give her a lift home. He seemed genuinely relieved, so I followed him to the end of the street where a figure was huddled up against the park gates, clearly in distress. 


The lady, Mandy, had taken her small dog for a walk in the sunshine that afternoon. The effort had tired her out and she had fallen asleep in the park and woken up in the dark.  The man, a neighbour, had gone looking for her when she failed to return home and found her very cold and disorientated in the park, having lost her shoes.  


Back at the house, Steve’s initial reaction on hearing this story was like mine - it was a confidence trick.  But when he heard the full details, he put on his coat, got into the car and managed to reverse to the end of the street between closely parked vehicles so that she didn’t have to walk any distance.  Even with two of us supporting her, it wasn’t an easy job to get her into the car.  A few minutes later, she was delivered safely home where her neighbour Nick would look after her.


I sat in the passenger seat when we drove home.  I could still feel the cold from Mandy’s body, even through a warm coat.  I shudder to think what would have happened to her, had her neighbour Nick not bothered to go out looking for his missing friend.  I don’t know how many doors he had knocked on asking for help before ours. What would have happened to her, had our suspicious minds prompted us to shut the door on Nick rather than believing his story?  


It struck me that one day, we could easily be put in this position - needing help from a stranger if Steve suddenly found himself having serious breathing difficulties some distance from home or transport. If that time ever comes, I hope the person we approach will be a good Samaritan.  


Heading home, we couldn’t fail to miss the huge super moon shining brightly low in the sky over Oxford. What a wonderful sight!  We would have missed it, had we not been prized out of the comfort zone of home in response to Mandy’s predicament.  Good to have a happy ending!

being positive

You probably haven’t heard of Stephen J Gould.  He was a paleontologist, evolutionary biologist and an influential and popular American science writer.  Why am I writing about him in today’s blog?


Gould died in 2002 - exactly 20 productive years after being diagnosed with mesothelioma.  How was he able not only to survive mesothelioma for so long, but continue to thrive when the median mortality rate for the disease is less than a year?  


In his book The Median Isn’t the Message, Gould writes:

Match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer.

Well - the sun is shining and after a few days of emotional turmoil we are both feeling positive :-)  

And long may it last!

tears before bedtime

It’s been another emotional day, one way or another.


I thought the pent-up stress of waiting for Steve’s assessment yesterday was all under control, especially given the wonderful news that his condition is still stable. However, these days the emotions are never far below the surface…..


….They bubbled up again this afternoon as I tried to say a last farewell to my work sub-group at a meeting in London, when presented a goodbye gift and card. The two others members of the group who are also leaving gave eloquent speeches which they had obviously thought about carefully beforehand. However, I hadn’t prepared anything - there have been other things on my mind in the recent weeks culminating in yesterday’s hospital assessment. All I could manage was a tearful thank you.  What a big softie I am…..


I couldn’t face opening the card and present at the time, but have done so now, back at home, where only Steve can see the tears welling up again. Hopefully, by the end of next week (by which time the last report will be finished and I’ll be ready to start packing up the home office) I’ll be able to say thank you in writing a bit more coherently than I did today.  At least no one will see if the chin wobbles when I hit the send button!


While I’ve been in London, Steve has been busy printing and packing the images that we are submitting for the RPS International Print Exhibition.  These have now been collected by courier and are safely on their way to Bath in time for Monday’s deadline. Neither of us feel very confident, but hey ho….nothing ventured, nothing gained!


Time to put on our red noses, open a bottle and turn on the TV for a bit of Comic Relief!  No doubt there will be more tears before bedtime as we are laughing uncontrollably one minute then watching in horror the lives of those less fortunate than ourselves the next.  Well done Kieran (meso warrior Debbie’s son in Plymouth) for raising money by dyeing his hair red for red nose day!  As I haven’t done anything funny for money this year, I will donate my leaving collection to Comic Relief and Mesothelioma UK in the hope that it will help bring smiles instead of tears.

…………………………………….

sweet dreams are made of this

We saw a new doctor at the hospital today as well as Nickie, Steve’s cancer nurse.  Before examining him, the doctor asked Steve a lot of questions about how he was feeling, the drug trial he had taken part in during 2009, his exposure to asbestos in the past, how his physical capacity was affected by the mesothelioma and whether he was able to take exercise. From where I was sitting, it felt like she might be preparing us for bad news……


…..So it was a HUGE relief when she finally said that having looked carefully at Steve’s X-ray she could find no change since last December - no sign of disease progression, everything still stable!


Leo is still sleeping peacefully.  Sweet dreams are made of this…….


As Steve’s next assessment is not until June, we can start looking ahead and thinking about what we would like to do during the next three months.  The taste of freedom is so tantalizingly close now - just 11 days before I finish work (and even fewer days to finish my report…)  But we won’t wait until then to celebrate - there’s a bottle of fizz being chilled for tonight!


Whether the good news is down to early diagnosis, the trial drug Velcade, the supplements Steve takes every day to boost his immunity, a positive mental attitude, fighting spirit and dogged determination - or a combination of any or all of these - we really don’t have any idea. But something is clearly working for Steve at present and long may it continue.  Here’s to the next three months and many more after that - cheers!

another step in the long goodbye

I start today’s blog with an apology. It’s a bit of a self-centred whinge, probably a symptom of feeling stressed about going to the hospital tomorrow. When I next write it will be all about Steve - the results of his assessment and whether Leo is still sleeping 21 months and 1 day after diagnosis. 


However, as anyone diagnosed with mesothelioma will tell you, the web of cancer cells makes its presence felt way beyond the body it is attacking. So to take my mind off Steve, today's blog is dedicated to those whose lives are affected by mesothelioma even though they are not the victim of the disease.  We are the “collateral damage” to the asbestos exposure which happened many years ago and will eventually take our loved ones from us.


I’ve said it before, but it’s worth repeating.  Living with the mesothelioma time bomb means that every minute of every hour is precious, whether it’s your life that’s endangered or that of your loved one. You tend to live each day at a time and usually resist making plans and commitments too far ahead into the future. That sort of lifestyle is incompatible with a job where work is programmed well in advance and, in some instances, over a prolonged period. That’s why I took a big decision last year to apply for “early release” from employment and in doing so, set in motion the long goodbye that will culminate in 12 days time. Today was a significant step forward in that long goodbye.


I’ve come back from Bristol with a folder of information about retirement, pensions, benefits, self-employment and such like. I’ve left behind my official name badge, the security pass to the building, a thank you present for the team that’s supported me these last few years and many work colleagues that I will probably never see again. It feels very strange - especially as I’m still working very hard to complete the last report before the computer is returned and the phone line which linked me to the office is disconnected, and with it one of the support systems that has helped me get through the last 21 months.  


I had intended to reduce my working hours gradually over the next five years or so in any event - a gentle slide into the next phase of life. However, Steve’s diagnosis has prompted this more drastic action. I hope that very, very soon we’ll be able to enjoy doing things spontaneously as and when the fancy takes us, effectively for the first time. Up until now our lives have revolved around school as children, academic terms as students, work schedules as adults and term times when we were parents of school age children - so it will be a real novelty to have such freedom!  


However, it’s difficult to get my head around that today, not knowing what will happen tomorrow at Steve’s assessment and whether once more life will be timetabled according to chemo appointments. I don’t want to sound negative, but I am acutely aware from following the lives of other meso warriors that the news is not always what you want to hear. That said, I take comfort from knowing that the fighting spirit is strong and the support from our family, friends and the meso community will be there, if we need it.  We’ll know soon enough…

another tick in the box

Although it was hard work last Thursday, hanging the exhibition in the Gallery at Chipping Norton Theatre went smoothly and we were pleased with the end result. We were joined on Saturday by Sarah, who helped us to prepare and calmed the nerves on Sunday as we waited for guests to arrive at the private view.  I’m relieved and delighted to say that the show was well received by everyone who made it to the launch.  Thank you all for making the effort to come, whether it was just a short walk from home, a longer drive from further afield or a train journey followed by an energetic cycle ride over the Cotswolds.  Thanks also for all the wonderful comments in the visitors book - I hope there will be many more over the next three weeks while the exhibition is running!


That’s one of the big events of March ticked off successfully. There are more to follow this week.  I’m off to Bristol on Wednesday and London on Friday for two last work-related meetings before my final day of service at the end of the month.  However, the BIG event of the week is Steve’s next assessment on Thursday when we will find out what’s been happening inside over the last three months. 


If you want to know whether Leo is still sleeping peacefully or getting up to mischief, you will need to check back later this week.  As anyone with mesothelioma will tell you, the build up to an assessment and the wait to hear the results of scans is a nerve wracking time. Trying to stay positive….

a legal landmark!

A decision in the Supreme Court today brings good news for mesothelioma victims who developed the disease as a result of relatively low levels of exposure to asbestos.


The decision relates to damages claims by two victims of the disease, one exposed to asbestos dust whilst at school, the other whilst working as a secretary in a packaging factory.  Although the defendants in both cases did not deny that asbestos exposure had occurred, they appealed against compensation awarded by the Court of Appeal on the grounds that they should only be liable if responsible for causing exposure at a level which “at least doubled the risk” of developing mesothelioma in later years. 


Today the seven Supreme Court justices unanimously dismissed the defendants appeals, rejecting the argument that claimants should show that their asbestos exposure doubled the risk of mesothelioma.  The Court ruled that whether exposure was too insignificant to be taken into account was a matter for the trial judge based on the facts of each particular case.  


Commenting on the decision, once legal expert in the field said  


“This ruling is a positive step towards proper acknowledgement of the risks that asbestos can pose in schools and other public buildings, even if the amount of fibres which pupils, teachers and others come into contact with is relatively small.

The risks posed by the toxic fibres have been shown to be far greater in children’s lungs rather than those which are fully-developed, meaning school pupils are more susceptible to the dangers of asbestos.

We hope that this ruling - and its implications over what ‘low-level’ exposure can lead to - will lead to a step change in how the hazardous material’s presence in schools is viewed and hopefully lead to its eventual removal from all sites.”

Given that there is no known safe level of exposure to asbestos, I think this decision is a great victory for common sense.  It may also help Steve’s case, given our belief that he was exposed to asbestos dust whilst a student in an educational building, demolishing walls to create open plan studios to earn a bit of cash over the Christmas vacation. We wait to see what Steve’s legal team thinks….

tossing and turning

It’s Shrove Tuesday and Steve’s been tossing pancakes, without mishap!  Jolly tasty they were too.  


After signing and sending back yet another copy of his statement last week, today Steve had a letter from the solicitor to say that the date has been fixed for the trial in his damages case.  We are going to court 5, 6 and 7 September.  We wouldn’t normally make arrangements so far ahead, but those dates are firmly on the calender.  After goodness knows how long (I shall have to look back at the blog and see) the tide has finally turned on the court case and it’s slow steam ahead……but at least we have a date now!

In Focus and a look at the bigger picture

Yesterday we took a break from working on the website (Steve) and preparing for the exhibition (me) to go to Focus on Imaging, a huge photographic trade show at the NEC Birmingham.  In previous years we have spent the whole day there walking round and round and round, and come away absolutely exhausted.  We have finally learnt the lesson the hard way (and about time too!)  


This time we paced ourselves - arriving after an early lunch, using the disabled parking area to avoid a long haul from a remote car park and having a cup of tea to rehydrate as soon as we felt tired.  Steve had been specially invited to the RPS stand to meet the society’s president who wanted to say a personal thank you for the work he does as a moderator on the RPS forum.  We also met one of the trustees who not only remembered Steve as a moderator, but also my image of the Allotment in June which was the RHS Photograph of the Year last year - so we were both chuffed!


We picked up some cord, D-rings and screws ready for hanging the exhibition on Thursday. Handled a few cameras, but found nothing that was quite right for our purposes - a camera small and light enough to go in a pocket, but with a viewfinder, ability to take RAW images and, if possible, a zoom lens.  Both of us had a go at shooting professional models.  It was a real eye-opener to take pictures of someone who comes to life in front of a lens and can deal with being stared at by dozens of strangers clutching cameras without “freezing”.


Our last foray was into the Caravan Gallery, where we chatted to the photographers (difficult not to in such a confined space!) and saw pictures that brought tears of laughter to our eyes. If it comes to a town near you, please go visit - it’s great!  http://www.thecaravangallery.co.uk


Back to reality today, catching up with our friends in the online meso community.  Debbie in Plymouth is looking forward to going back to work after a long break.  She’s had a positive response to her last treatment in Germany and there is the possibility of PCT funding if this continues. Ronny in Maidstone is out of hospital where she has been treated for serious problems with her kidneys - probably a side effect of chemo. While waiting for the results of her latest scan, Mavis - also in Kent - has been doing great work raising awareness with her book and letters to MPs.  Karen here in Oxford has secured major improvements to the care of patients on clinical trials, after her husband died whilst on a drug trial for meso treatment - there will be an article in the Daily Mail tomorrow.  Jan is returning to the USA for cryo-ablation treatment after discovering some disease progression in February.


Further afield, Anita in Australia has given an interview about living with mesothelioma to the Herald Sun - all good stuff to raise awareness.  I have added a new link to a blog by Julie, also in Australia, who was diagnosed with mesothelioma in July 2008 and is currently slogging it out on the front line of the battle after an increase in tumour growth.  She is such a brave lady, as are all the meso warriors.  Plans for Global Asbestos Awareness Week 1-8 April are progressing well co-ordinated by my namesake in the ADAO.  I’ve been in touch with the local press about doing a feature and am told someone will probably be in contact about a feature.  We shall see!


Our solicitor has been in touch briefly to say that the team is waiting for the report from the asbestos sampling company on further samples taken from the building where Steve believes he was exposed back in the early 70s.  I’d be surprised if they find anything given the passage of time and the clean up that’s taken place since, but you never know…..


Looking forward to seeing some of you at the private view next Sunday.  If there are any meso warriors out there within striking distance of Chipping Norton, Oxfordshire, with no plans for next Sunday afternoon, why not join us?

One in a million

When I started writing this blog, I found it difficult to look very far ahead.  Life was lived one day at a time. It still is to an extent.  However, we are slowly but surely reaching some of the big milestones which I hoped, but didn’t dare count on, Steve reaching - let along reaching AND enjoying! So far, we have celebrated two Christmases and New Years, our daughter’s 21st birthday, my 60th birthday and a wedding anniversary since his mesothelioma diagnosis.  


One of the items on my 2009 birthday wish list was to send Steve a birthday card to mark his One Millionth birthday in 2011. And that’s just what I did today.  Not just one card, but a “million” little cards for each year of his life so far. In case you think I’ve gone mad, one million in binary numbers = 64.  There are cards all over the place!


We spent Steve’s 64th birthday in London, strolling in the sunshine from Westminster along the riverside to Tate Britain, where we enjoyed a quick flirt with The Romantics and a longer liaison with Water Colour after lunch.  Far too much to see in one go!  Must go back and look at one room at a time, rather than floating aimlessly (which is what I did today - I think Steve was a bit more organised!)


Home for a birthday tea of chocolate cake (one candle for his first million years) and opening cards and presents.  The champagne is cooling and there are some delicious nibbles to go with it, just as soon as the birthday cake has gone down.


When you are our age, you can’t write a blog about a 64th birthday without quoting the Beatles - so here we go!

When I get older losing my hair

Many years from now

Will you still be sending me a valentine

Birthday greetings, bottle of wine?

If I’d been out till quarter to three

Would you lock the door?

Will you still need me

Will you still feed me

When I’m sixty-four?

As you can see, in spite of chemo Steve hasn’t lost his hair! And yes, I do give him Valentines and birthday cards, and bottles of wine. Occasions when we stay out until quarter to three are few and far between these days - and I rely on Steve to remember his key.  And yes - I still need him and feed him.  Which reminds me - it’s time to break open that bottle of bubbly!

Happy millionth birthday Steve!

the power of positive; a thank you and a dedication

I recently read an article on how overwhelming it can be for people diagnosed with mesothelioma to deal with a poor prognosis when, on the one hand, you are fighting to improve your survival and, on the other hand, being forced to face your mortality. 


The article goes on to refer to various studies which have demonstrated the power of the mind-body connection where positive thinking results in an improvement to a patient’s health.  According to a landmark study in 2007 by the Institute of Medicine, social and emotional support are just as important as medical care in the face of a cancer diagnosis.


I’m not surprised by the findings of these studies, just surprised that it takes a “landmark study” to discover what any one diagnosed with mesothelioma will tell you from experience - whether it’s Graham Sherlock-Brown’s PETAL philosophy, the Meso Warriors support group on Facebook, people like me who write blogs to raise awareness or major organisations like Mesothelioma UK, Macmillan or the ADAO whose approach is to look at whole person, not just the disease.


So today’s blog is an opportunity to say thank you to all those who help us and each other by trying to stay positive and providing social and emotional support whenever and wherever they can.  It is also dedicated to all those who are in special need of such support at this time, in particular Jan and Ronny who are both going through personal battles at present in their long term wars on mesothelioma.

committed

The deed is done.  


At a time when so many are facing redundancy or desperately job-hunting, I have volunteered to leave a well-paid, professionally satisfying job that has taken me to places I’ve never heard of, let alone visited, before.  I have signed on the dotted line and am now committed.  Or perhaps I should be committed…am I mad?


The answer is a resounding “NO”  


Since Steve was diagnosed with mesothelioma, life’s priorities have changed.  When you are live with a time bomb that could explode at any moment, time itself is more precious than anything else. I still feel gutted that I wasn’t there when Steve heard the devastating news back in June 2009 that he had an incurable cancer.  Why wasn’t I there? I had to be in London for work reasons.  


In my job, it’s not possible to delegate once past the point of no return.  If you are committed to being at a certain place at a certain time, then you turn up unless too ill to get out of bed, or travel is disrupted by something completely outside your control.  Details of your availability are requested six months in advance; work programmes are fixed at least six weeks in advance; the main area of work that I specialize in requires a commitment on and off over a period of 20 weeks or so.  That sort of working pattern is simply not compatible when you want to be with a loved one who has mesothelioma.  


So I have accepted an “early exit” offer and 28 March will be the end of that particular working era for me. I can look forward to spending more time with Steve.  I won’t have to abandon him at critical moments.  We can make last minute, spur-of-the-moment decisions to do things, go places, or simply relax.  We can take off with our cameras when the light is good.  We can go on life’s unpredictable journey together, without me having to worry about how to be in two places at once, or letting someone down.  


All sorts of exciting possibilities open up from the end of next month.  We may even have time to do some spring cleaning in between all the other things on offer!  


Between now and then, there’s a mountain to climb work-wise; an exhibition to prepare ready for hanging.  Steve’s birthday is next week; Katie is coming home for the weekend tomorrow to kick start the celebrations - Steve’s special day and the start of her new job next week.  There are various social events to look forward to, one of which is tonight…so time to finish today’s blog and get ready!

the significance of dates

Time seems to pass more quickly as you get older. However, since Steve was diagnosed with mesothelioma in June 2009, we have become even more aware of the passage of time and the significance of dates.


Today is 18 February, which means it is 20 months and 2 days since diagnosis.  Steve has been able to celebrate yet another Valentine’s Day.  This year, we marked the date with a meal out in Wimbledon, where I have been based for much of the time over the last two weeks.  As far as we can tell, Steve’s physical condition has not changed in the four weeks since the last blog review. People often remark how well he is looking, which is true. They almost seem to forget that he is living with a time bomb inside him.  He still wakes up in the night from time to time, aware of how vulnerable he is and that his health could deteriorate at any time without warning.  Every little twinge is like an alarm bell ringing…….


Today is 18 February, which means it is now one month minus one day before Steve’s next scheduled hospital assessment.  An X-ray will reveal any indication of disease progression, in which case he will have the full scan treatment to establish exactly what’s happening inside.  In either event, the X-ray/scan will be followed by the nerve wracking time waiting to talk to the oncologist and find out the news.  Some meso warriors have to wait a whole month for the results of a scan.  How do they do it? The next four weeks or so will become increasing stressful as the date of the assessment approaches.  The thought of having to wait yet another month after that for the results is horrifying… 


Today is 18 February, which means its less than two weeks to Steve’s next birthday when he will be 1 million years old in binary numbers!  I wish I could give him a cure for mesothelioma as a birthday present.  In reality, I have no idea what to give him to mark this auspicious occasion - we still have gifts to each other stacked up from previous special occasions waiting to be taken - hot air balloon rides for both of us, a special driving experience for Steve, a special boat trip for me.  I hope that soon we’ll be able to make the time to enjoy them.  The phrase “when I retire” is cropping up in our conversations with increasing regularity…..


Today is 18 February, which (until this morning) meant it would be exactly one month until I am due to retire.  I’m now told that the date of my last day of service has been pushed back to 28 March to give me a bit more leeway to finish the report I’m due to start working on in ernest next week.  Very welcome news in some respects as the extra week takes a bit of pressure off a deadline which which would be very difficult to meet given other commitments. However, it’s also frustrating as it pushes back the end date I had firmly fixed in my mind. I saw the early release compensation offer for the first time this morning and it’s not what I was expecting - whether I get a satisfactory answer to my queries before the decision deadline early next week remains to be seen.  I do hope so.


Today is 18 February, which means it’s less than three weeks until we’re due to hang the exhibition.  There’s lots of printing, framing, mounting, stretching and varnishing to do before then, publicity to organize and private view invitations to be sent out at the start of next week…..


Today is 18 February, which means its ten weeks and two days to our 39th wedding anniversary…. Oh dear, I seem to be getting a bit ahead of myself. I don’t want to wish away our precious time together.  Need to get back to the here and now, take each day as it comes and make the most of it.  After all, a date is just a date, is just a date.  Life is for living not watching the clock or being enslaved by the calender.  Let’s enjoy every day, as much as we can….  

for my valentine

Who knows how long I’ve loved you?

You know I love you still

I will love you all your lifetime

If you want me to - I will

Love you forever and forever

Love you with all my heart

Love you whenever we’re together

Love you when we’re apart

I never want to loose you

Your love song fills my heart

Sing it loud so I can hear you

Make it easy to be near you

For the things you do endear you to me

Yes, you know I will….

I will




Inspired by and based on The Beatles “I will”

arrivals and departures

Our house been a bit like the arrivals and departures lounge at a transport interchange this last week. 


Katie arrived late last Sunday and left on Thursday, having benefitted from a few days of personal space and time. I left for London on Tuesday and returned Friday evening, having held two hearing sessions and pounded the streets of south west London looking at sites in between. 


Steve has been providing a taxi service for the ladies in his life, collecting daughter and heavy suitcase from the station and taking her back again four days later, and driving wife (and a small forest-worth of documents) to the hotel in Wimbledon, on to the Civic Centre the next morning, and doing the return round trip two days later. No wonder we both feel a little disorientated…….


As we’ll be doing a repeat of the London round trip next week, we’re trying to cram a lot into this weekend - catching up on post, e-mails and other news; swapping out paperwork for next week’s hearings; re-packing the case with clean clothes and supplies.  There are several birthdays coming up - some cards are posted already, the rest will be sent tomorrow.  We are amazed to think that our great niece Esme is almost a year old - the last twelve months have flown by!


It’s almost 20 months since Steve was diagnosed with mesothelioma, but we’ll put together our thoughts on that subject next weekend, by which time (we hope) the pace of life will be slightly less hectic.  However, I can share some other good news which is now in the public domain - a selection of my images will be featured in Issue 9 of Fotoblur Magazine, which is due to be published late February/early March. If you are curious, you can find out a little more by going to http://www.fotoblur.com/blog/42


Now it’s time to tick off some more things on the “to do” list before we’re off on our travels again……Last but not least, happy birthdays to Peter and Paula, Kate and Esme.  Hope to see you all soon!

when will they ever learn?

Steve is a happy bunny because England won the first of the Six Nations rugby matches last night.


I am a happy bunny because I have just finished the words for a photography magazine feature and have been told that it will include eight of my images.


We are both very angry bunnies about a request for a loan guarantee for 58 million dollars from the province of Quebec, to revitalize the Jeffrey asbestos mine in the town of Asbestos, Canada, and to sell asbestos to countries like India, Pakistan and Vietnam where the approach to workplace safety is less than ideal.  


In a civilized world where an increasing number of countries are banning the use of asbestos, how on earth can anyone in their right mind want to pursue this course of action?  If the Canadian Government has that sort of money going spare it ought to be be plowed into removing asbestos from the country’s buildings, supporting those struck down with asbestos-related diseases through no fault of their own and invested into research to find a cure for mesothelioma, which has yet to peak in terms of the numbers of people diagnosed.  


Arguments about the type of asbestos mined simply don’t hold water.  There is no known safe dose when it comes to inhaling or ingesting asbestos, regardless of whether its blue (crocidolite), brown (armosite) or white (chrysotile).  


When will they ever learn?


To find out more follow the link on the right to Asbestos Jeffrey Mine, Canada under Raising Awareness

rabbits and bees

Happy New Year!  I started today’s post very late on the first day of the Chinese Year of the Rabbit and I hope it’s a good one for you all.


We are more like busy bees than rabbits at the moment which is why tonight’s blog is concise to say the least!


Steve has been updating the Oxford Studio website, printing pictures and running the house - shopping, housework, sorting out the insurance.  He’s had yet another version of his witness statement for the damages court case to check and sign.  I’ve lost track of which version this is!


I’ve been working flat out preparing for next week’s hearings in London, and squeezing in a bit of preparation for the forthcoming exhibition, words for the photography magazine feature and trying to stay calm….


It’s gone midnight as I’ve been finishing today’s brief post - how quickly time flies.  This unusually intense pace of life is set to continue for the next few weeks, so don’t panic if there are long gaps in the blog - we are just busy, busy, busy….