Thursday 30 September 2010

close encounters

We had a close encounter yesterday with a famous artist. Well, the famous artist's self-portraits to be precise.  Paul Gauguin.  It's an eye opening exhibition at Tate Modern...not just the famous pictures Gauguin painted in Polynesia and Brittany, but drawings, prints, ceramics and woodwork, as well as some fascinating background information about his life and times.  Exhausting, but well worth a visit.

More close encounters coming up shortly at the Mesothelioma Patient and Carers Conference in London. There will be talks on a wide range of subjects by representatives of the medical profession, both national and international; Asbestos Support Groups; those working on different approaches to help mesothelioma patients, and patients themselves, including Debbie Brewer and Mavis Nye who both share their experiences on blogs (links top right) and play an active role in the Facebook Meso Group, plus Graham Sherlock-Brown, whose PETAL philosophy was so comforting and inspirational to us in those early days following Steve's diagnosis. It will be great to see and hear them in the flesh!

Not only that, but Prof Vogl from Frankfurt will be talking about chemoperfusion - the technique he uses to deliver chemo to the diseased area, allowing higher doses whilst minimizing the impact on healthy body tissue.  Although it doesn't work for everyone, some - like Debbie - have had truly amazing results in terms of tumour shrinkage.  There's a session on mistletoe - nothing to do with Christmas decorations - about its role in boosting the immune system, and another on the role of immunotherapy, an area of research that's showing promise in the treatment of mesothelioma.  

With us in the audience will be many other people whose names I know well from the online meso community. However, this will be our first opportunity to meet them face-to-face.  Really looking forward to it!  It will be a special day, I'm sure.  And for us, the special day will finish somewhere completely different.  But you'll have to wait and see where :-)  Come back next week to find out more.......

Tuesday 28 September 2010


It must be a sign of the times that for his birthday, Jack requested our help with decorating/DIY on his house.  So that's how we spent our time on last weekend. As is often the case with such projects, things look worse before they look better.  However, I'm pleased to say that there was a noticeable improvement by the time we left - it's good to make a positive difference!

His request brought home to me what a precious commodity time is - costs us nothing to give, but is priceless in terms of what it can achieve. Not that we need much reminding, living with the mesothelioma time bomb. When time is not on your side, there is a tendency (for me, at least) to look for ways to squeeze the most out of every single minute. This has resulted in a remarkable year since Steve was diagnosed, when making the most of life and our time together have been top of the agenda.  

However, embracing life full throttle can be tiring and occasionally rather overwhelming. I must remember that we need time to relax and keep on top of everyday things like housework and building maintenance.  There are also negative moments, when it feels like we're in a race against time, hurtling towards the moment when the news will not be good.  At such times, I desperately want to stop the clock and keep things just as they are now.

So where does that leave us?  Well, there's another very busy period ahead of us in October, but we need to balance this out with some chill out time in between. We've started the ball rolling on the maintenance front this morning, with a visit from the builder to look at things which need sorting out before winter sets in.  It's time to take the garden in hand and cut back the clematis and climbing hydrangea which have climbed up to and over the roof, using gutters and the down pipe for support, which is not good.  The birds will just have to find a new nesting place next spring.

In the meantime, there are more enjoyable things to occupy our time.  More of those shortly!

Thursday 23 September 2010

sharing the good news

It's three weeks since we were given the wonderful news at Steve's last assessment that his cancer is still stable.  Don't worry - nothing's changed, except that we now have it writing, and the letter goes into more detail than we were told at the time (or perhaps we just heard the word "stable" and were so relieved that nothing else sank in....)    

In his letter to our GP, Dr Talbot (Steve's oncologist) writes   

"Status:  On examination he appears very well indeed, with no palpable lymph nodes; expansion of the chest is equal; percussion note resonant; breath sounds normal. No sign of metastatic disease.  No cardiac signs.  

Test results:  Today's chest X-ray is stable, with no evidence of disease progression.  

Assessment: Stable disease"

With so much bad news about, I thought it worth sharing the good news again, now that we have more detail.  It's also a positive introduction to the blog for any new readers visiting us via the Mesothelioma and Asbestos Awareness Centre (MAACentre) website, which now features Steve in its "Survivor Stories", hard on the heels of Debbie in Plymouth, who has been such an inspiration to us and other meso warriors and their families.  I've added a link to the MAACentre website on the can never have too much good information.

More good news - tomorrow Friday 24 September - is the World's Biggest Coffee Morning - a fundraising event organized by MacMillan Cancer Support. If you stumble upon such an event, you can eat the delicious home-made cakes without feeling guilty, knowing your contribution is helping support people with cancer.  Follow the link on the right to see what's on offer near you. 

Our plans for the next few months are coming together - family visits this weekend; a trip to Gauguin exhibition at Tate Modern next week; meeting up with the meso warriors and their supporters next weekend - it will be great to see some of our virtual friends face to face, at last!  Straight after that, we'll be using one of my special birthday presents - more of that in a future blog :-)  

There are more get-togethers with friends in the pipeline - some here, some a bit further away in the UK and abroad - as well as a couple of exhibitions to prepare for in October. In fact, lots to look forward to.  Housework will just have to take second place to enjoying life, which takes priority!

Sunday 19 September 2010


If you read the blog regularly, you will know that my day usually starts by checking the Google alerts for mesothelioma in order to keep up-to-date with news that might bring us more hope. I don't usually open articles about people dying as a result of the disease - it's too depressing.  However, today I followed up a headline "Doctor dies of mesothelioma contracted at UK hospital", fearful that it might be Dr Andrew Lawson, whom we met online back in the spring and whose articles have been so positive (check out the link top right).  

It wasn't a report about Andrew, but another doctor, Prof Kieran Sweeney from Exeter, who had died recently as a result of the disease.  The article finishes with a quote from Dr Robin Rudd, the consultant who examined Steve in relation to his damages case.  Small world!  

The report said that Prof Sweeney had been diagnosed with mesothelioma in 1979.  You don't need a degree in maths to calculate that he had survived more than 30 years post diagnosis, if that was true. I had already called out excitedly to Steve to say that I had found a really long term meso survivor, before thinking to myself - can this really be true?  

Further research online indicated that some idiot had got his or her facts wrong.  Poor Prof Sweeney had survived 14-15 months post-diagnosis, meaning that he had had less time to enjoy life than Steve has already enjoyed since he found out his fate. Our raised hopes were dashed......

However, the research that yielded this sad information also led me to a recent article about the same man by none other than Dr Andrew Lawson, written in June this year. Another rapid exchange of e-mails revealed that Andrew is still in there fighting, some three and a half years post-diagnosis and that he lives not far from us!  We are thinking of you tomorrow Andrew.  Hope all goes well with the op and that you have a speedy recovery.  Look forward to meeting you face-to-face when you are feeling up to it!

The research also led me to another site with which we now have a connection.  I have now added Jan Egerton's blog (Jan's Journey) to the list of meso warriors whose story you can follow through the link top right.  It also led me to the Bob Tolley Fund site and blog, which raises funds and awareness of mesothelioma and asbestos-related diseases, set up in memory of Bob who died as a result of mesothelioma in September 2006.  

It saddens me so much to read of other meso warriors who have recently lost their fight against this awful disease and to those they leave behind.  There have been too many on the Facebook group recently.  It tears your heart out.  But we keep fighting.

There have been other connections in recent days - most notably a wonderful reunion with Hillary, an old friend from student days, who managed to fit in a trip to Oxford (with daughter Ruth) on a visit from Australia.  It was great to see you Hil!  I'll post the photo soon. Talkng to Hil brought home to us the international nature of the problem we all face with the mesothelioma time bomb, not just in the UK but world-wide.  If you want to know what's happening in Oz, just Google on "James Hardie mesothelioma" and prepare to be shocked.

I think I need a long walk to clear my head........that's what I'll be doing tomorrow, before going back to work for the rest of the week - always assuming I can remember how to log into the work's been so long!

Thursday 16 September 2010

16 months since diagnosis......

It's 16 months today since Steve was diagnosed with mesothelioma and we are still thanking our lucky stars after hearing last Thursday that the cancer continues to remain stable. Even yesterday's meeting with the legal team hasn't taken the smiles off our faces, although it was a long and quite exhausting day..

Getting the papers ready for yesterday's meeting reminded me that it's been a long time since I first sought legal advice through my union about the likelihood of a claim for damages succeeding. Occasionally on the blog I have reported progress on this front. Perhaps now is a good time to recap on what's happened, update you on where we are (as of yesterday) and where we go from here. If nothing else, it will give those of you who find yourselves in similar circumstances an idea of what to expect, should you decide to go down this route....

Our first contact with the solicitor was in July 2009.  By the end of that month we had been visited at home by one of his colleagues who interviewed Steve about possible sources of exposure to asbestos.  Steve signed forms instructing the practice to represent him and to allow the release of medical records from the GP and hospital about his condition, and his employment history from the Inland Revenue.  

That was followed up in August by a request to sign a written statement prepared by the solicitor based on the interview and an explanation of the four "hurdles" we would need to clear to pursue a claim for damages (i.e. proof of Steve's mesothelioma condition; showing how that condition arose from exposure to asbestos; proof that whoever exposed Steve to asbestos had been negligent - failed in their duty of care - and that the risk of exposure ought to have been foreseen and measures taken).

Over the subsequent months, we did our best to recall detailed information about possible sources of exposure in response to the solicitor's questions and look for any material that could be used in evidence.  By October, we had tracked down a couple of dated slides of Steve demolishing partitions at Oxford Poly when he was a student, and obtained copies of the Building Regs plans for the building where the work was carried out. Asbestos products were commonly used in educational buildings of that era (mid-50s). The Building Control file notes stating that fire resistance and means of escape were not satisfactory increases the likelihood that asbestos products would have been used in construction of walls and ceilings of the corridor fire escape route, which Steve had subsequently helped demolish in the early 70s.

As a result of this preliminary assessment, the legal practice accepted the case in February 2010, with a formal letter of engagement for Steve to sign and all the associated paperwork provided. A consulting engineer was asked to assess the likelihood that asbestos would have been a constituent of the walls/ceilings knocked down at the Poly, and further questions were asked about other possible sources of exposure. 

We eventually met the solicitor face-to-face when he visited us at home in March to go through progress to date and explain what would happen next. Two "Letters of Claim" dated 26 March 21010 were served on Oxford Brookes University (the former Polytechnic) and Oxford City Council, the education authority at the time Steve's likely exposure to asbestos occurred. The solicitor subsequently entered into correspondence with the County Council, the current education authority.

In April, Steve signed a "Statement of Truth" which would be lodged with the Court and served on the Defendants.  He was examined by an independent medical consultant to confirm his mesothelioma diagnosis, and Dr Rudd's report was received shortly after. In his opinion, assuming the demolition work at the Poly involved asbestos, it is likely that this exposure would have materially increased the risk of Steve contracting mesothelioma. 

The consulting engineer's report was received in May.  Mr Glendennning concluded that the defendants should have been aware of the dangers of asbestos at the time Steve demolished the partitions; it is likely that the partitions contained asbestos; the defendants did not ensure that exposure to asbestos fibres was reduced as far as reasonably practical.  The report was disclosed to the defendants, who were given 14 days to admit liability, otherwise proceedings would be issued in Court.  

The Claim Form and Particulars of Claim were sent to Court in June 2010 to be issued in Sheffield under the mesothelioma claims process and will be dealt with by Judge Oldham, who is very experienced in dealing with such claims.  On 30 June 2010, proceedings were served directly on Oxford Brookes University (formerly Oxford Polytechnic) and Oxfordshire County Council (education authority).  

In early August, the solicitor advised that he had received the two defences, both seeking to shift responsibility on to the other for the responsibilities of the old Polytechnic. From the meeting yesterday, it is this complication which may delay the progress of the case, as legal arguments are made about who is responsible for Steve's "injury". 

The courts have held that the act of inhaling asbestos fibres is not the point at which the injury occurs, it is the point when the fibres trigger the abnormal growth of cells associated with malignant cancer. It seems that this is universally "agreed" as being at least 10 years before any symptoms occur. In Steve's case, the County Council is saying that his "injury" occurred in 1995, by which time the old Polytechnic had become an independent University and was no longer the responsibility of the education authority. We can only assume that Brookes is arguing that responsibility should rest with the education authority whose failure to exercise its duty of care in 1971 ultimately lead to Steve's condition.  

From our point of view, it makes no difference; both are "live' bodies with insurance to cover such eventualities. Our barrister thinks that the Judge may direct that the issue of liability be tried at an early stage. If it goes to trial, this will be at considerable expense to both defendants. The chances are they will reach an agreement out of court as to which will take responsibility, in the event that negligence is found.  

Which brings us to the other big issue - whether or not the walls and ceilings which Steve helped demolished contained asbestos. Although the materials themselves are long gone, there are a number of documents on the defendants' disclosure list which might shed some light on this matter, including an asbestos survey carried out in 2005 and various internal memos relating to asbestos in the Abercrombie Building, which is where the studios were located. If these indicate that asbestos was present in similar areas elsewhere in the building, it will obviously help our case. If not, well...a lot can happen in a building between 1971 and 2005, so it doesn't prove that asbestos wasn't present at the time Steve was involved in the demolition work.  

The relevant documents have been requested, so we won't have to wait long to find out. The fact that each party is trying to shift responsibility onto the other suggests that they are worried about something....

On all other fronts, the case seems to be open and shut - there is no doubt that Steve has mesothelioma and that this is caused by exposure to asbestos particles.  If the exposure is more than "de minimis", the full cost of damages can be recovered from one defendant, even if there was more than one source of exposure over a period of time, which is a possibility, albeit remote, in Steve's case. 

Since 1965, there has been a legal duty to reduce exposure to asbestos as far as reasonably practical. No measures of any sort were in place to reduce exposure when Steve was involved in this demolition job.  Consequently, whoever was responsible, be it the County Council or Brookes, they failed in their duty of care to Steve whether as an employee, a visitor to the building or a student in the building at the time asbestos dust was in the air. If an "injury" has resulted as a result of that duty of care being breached, then damages should be awarded.  

The barrister anticipates that if all goes to plan, this process is likely to culminate in a date for a trial being fixed for early in the New Year. However, the majority of cases which reach this stage end up being settled out-of-court to avoid the enormous costs of the trial itself. 

The next hurdle is looking at the documents disclosed by the defendants, in particular the 2005 asbestos survey.  Will that help Steve's case, or not?  We'll just have to wait and see.....

Tuesday 14 September 2010

managing expectations

It's not easy, but I think we are getting a little better at managing our expectations when it comes to Steve's mesothelioma. However, sometimes we forget that other things we were looking forward to, or had assumed were on track, don't always go as planned or anticipated, leaving us feeling deflated or a bit apprehensive. Which is how we are feeling at the moment, for reasons unrelated to Steve's condition. It maybe that the normal highs and lows of life are magnified when time is precious. Will just have to learn how to manage these expectations more realistically.....  

On the other hand, concerns about the case conference later this week may be affecting our outlook at present. Steve is not looking forward to raking over his past with a fine tooth comb or having his reactions as a witness assessed, which is what our barrister is likely to do in order to prepare for, and pre-empt, arguments from the other side. For my part, I think the session could refuel those negative, angry feelings about what happened to Steve all those years ago, and how easily it could have been prevented. It will be interesting to see whether our fears are well founded, or whether we've been blowing it up out of all proportion. After all, the legal team is on our side!

Time to stop worrying and get on with the "to do" list.......

Monday 13 September 2010

Looking back and looking forward

I bet you can't remember what you were doing on this day in 1981.  We can.  First baby decided to put in an appearance three weeks early.  Happy birthday Jack!  Hope you will be able put in an appearance in Oxford today - the cake is ready, the fizz is chilled......

Looking forward to more mundane matters, we now have a timetable for progressing Steve's damages claim towards trial :

10 September:  complete disclosure of documentation
15 September:  exchange of witness statements
17 September:  deadline for any questions the defendant wants to ask of Dr Rudd, Steve's respiratory consultant witness
08 October:  deadline for Dr Rudd's replies
22 October:  disclosure of defendant's engineering and respiratory evidence, if experts instructed
12 November:  joint statement to be produced on issues of common ground and matters in dispute between expert witnesses
Next available date after 12 November:  pre-trial review

We're off to Birmingham later this week for the case conference with our solicitor from Russell Jones and Walker, counsel Ivan Bowley, and the engineering specialist, Ian Glendenning.  It won't take all day, so we'll have our cameras with us and will make the most of the opportunity to do something enjoyable......

Saturday 11 September 2010

the future legacy of 9/11

I can hardly believe it's nine years since the collapse of the twin towers in New York - the memory of seeing the tragedy unfold before our eyes on TV is still vivid.  We feel for the friends and families of victims who died on that day.  

However, there will be other victims who are blissfully unaware of what fate holds in store for them in the future. In particular, those brave souls in the rescue teams and the innocent bystanders caught up in the clouds of dust as the buildings collapsed.  

I dread to think how many asbestos fibres were swallowed or inhaled that day, and the future legacy of peritoneal and pleural mesothelioma directly attributable to 9/11, the scale of which will only become evident in the next few decades. I hope so much that a cure will have been found by then, and that significant progress will have been made in the treatment of mesothelioma in the meantime.  

Thursday 9 September 2010

Assessment day

I'm sitting here with tears streaming down my face.

Tears of joy and relief!

To our delight (and the delight of the doctor and the Macmillan nurse too) today's X-ray shows no sign of any change in Steve's mesothelioma and he passed the physical check up with flying colours.  Leo is still stable and sleeping happily, some 15 months after diagnosis, and Steve doesn't have to go back to hospital until December for his next assessment!  

Time now to make plans about how best to enjoy life over the next three months, and make the most of autumn.

We shall certainly be celebrating tonight!  Hope you will join us in spirit, if not the flesh :-))  And many thanks for all the messages of support and positive thoughts!

Tuesday 7 September 2010

stay calm

I know from past experience that the run-up to Steve's hospital assessments is an anxious, increasingly stressful time.  I tend to scan the daily Google alerts for mesothelioma more intensely, searching for news of the latest research and clinical trails, just in case...... Invariably, I seem to end up at the Macmillan online community website, reading heartbreaking postings from those who have just been told they have the disease, and by people who feel utterly helpless as their loved ones reach the late stages of mesothelioma.  It's difficult to stay positive when faced with so much pain and suffering.

This time round, I had planned a diversion to take our minds off it - a day out in London to see a new exhibition that opens today and a trip on the Thames RIB - a speed boat experience that I was given for my birthday.  Then it all went pear-shaped because of the underground strike - not much point spending the day getting tired and irritable, fighting for seats on buses along with all the other displace tube travelers.  On to Plan B - here we are at home instead.  

Steve is distracting himself with the flight sim on the computer, practicing landing at Santorini airport (combining his newly discovered love of piloting with a virtual return to the island where we enjoyed ourselves so much in July).  

I am also on the computer, trying to stay calm.  Although there's nothing new on the Google alerts for mesothelioma, it's good to see from the meso community on Facebook that five of my virtual friends have arrived safely in Frankfurt for treatment at Prof Vogl's clinic and all seem very positive!  

Just seen that today I've had my 20th image featured in the Community Gallery on Fotoblur. As well as being a milestone for me, the selected photo is dedicated to another photographer whose partner was recently diagnosed with cancer, so it has a special significance in that respect.

There's the prospect of a long walk with a friend tomorrow - always a good way to get a different perspective on well as some much needed exercise!  

The weather forecast for Thursday is sunshine.  Let's hope that it's a good omen for Steve's assessment that day.  

Thursday 2 September 2010

This time next week....

The last three months have been amazing...parties, trips away at home and abroad, new experiences, meeting up with old friends.  However, we are now living in the run up to Steve's next hospital visit and assessment.  

By this time next week, he will have had an X-ray and a scan if necessary, and we will know what's been going on inside.  Keep your fingers crossed that Leo is still sleeping soundly and hasn't been disturbed by all the dancing, flying upside down, good food and wine........

Even though I have to go to a work-related meeting in Bristol tomorrow, there's still time to make the most of the last of the summer sunshine promised for this weekend and may be fit in something extra special before the next hospital appointment.