Wednesday 30 March 2011

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!

Monday 28 March 2011

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!

Thursday 24 March 2011

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.


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!) 

Monday 21 March 2011


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!

Sunday 20 March 2011

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!

Saturday 19 March 2011

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!

Friday 18 March 2011

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.

Thursday 17 March 2011

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!

Wednesday 16 March 2011

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...

Monday 14 March 2011

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....

Wednesday 9 March 2011

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....

Tuesday 8 March 2011

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!

Monday 7 March 2011

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!

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?

Wednesday 2 March 2011

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!