Saturday 16 October 2010

16 months and still going strong

It's 16 October 2010, which means it's 16 months since Steve was diagnosed with mesothelioma and he's still going strong, extending the right hand side of the median survival graph for yet another month....Now how good is that?

So much has happened since the last blog, it's hard to know where to begin, so I'll do it chronologically:

Mesothelioma UK 5th Patient and Carer Day
On 2 October, we went to the Patient and Carer Day in London, where we listened to a range of speakers from the UK and abroad.  For me, the stars of the show were the patients themselves, Debbie and Mavis (whose blogs you can access from the links top right) as well as Graham whose PETAL philosophy stood us in good stead last year.  

It was wonderful to meet face-to-face so many people who had been in touch with us electronically......not just those named above, but also Heather, who was one of the first people to contact me through the Macmillan website and some of the meso warriors from the Facebook group. Although he couldn't be there in person, being in recovery from an operation, even Dr Andrew Lawson (link top right) sent a positive message and amazed everyone with his plans for long distance cycling in the Far East next year.  For a conference where a high number of those attending were suffering from a terminal illness, it was a pretty vibrant event!

We also learnt some surprising (and not so surprising) facts

  • the majority of mesothelioma patients are not offered ANY active treatment
  • 80% of meso patients don't have access to specialist surgery
  • if just 1% of the money spent on litigation, meso healthcare and benefits was diverted into research, it would be a huge step forward - lung cancers are amongst the most poorly funded of all cancers, even though they affect a large proportion of the population
  • it's better to have chemo early
  • those who have a response to first line treatment are more likely to respond to second line treatment
  • UK patients can enroll in clinical trials in USA for free, but have to self-fund travel and accommodation
  • there is no one data base of all mesothelioma clinical trials ongoing in the UK (no wonder no one really knows what's going on....)
  • Cardiff University is at the forefront of research into immunotherapy, but its clinical trial of vaccine 5T4 TroVax is already oversubscribed before it's even opened
What do you do after attending a conference in St Pancras? Why, you jump on the train and hop off to Paris, especially if you are lucky enough to have been given some Eurostar vouchers for your birthday, like me!  By 10 p.m. on Saturday, we had arrived at the flat where we were staying for our short break, and at midnight, we were standing under the Eifel Tower watching it glisten in the darkness.  

Over the course of the following days we had some culture, good food and wine, re-visited some favourite haunts, explored places that were new to us, walked our socks off and generally enjoyed ourselves immensely!

As I see it
Two hours after returning home, we went to the opening of the Oxford Photographic Society's exhibition As I see it, which includes one of my pictures.  It's at the Jam Factory and is open until 30 October, 10 am - 11 p.m. Monday-Sunday. If you're in Oxford, try to see it!  Details

London Loop
I left Steve to recover the following day when I set off back to London to walk part of the London Loop, with friend Sarah, who does a great B & B too!

Over the last few days, we have been working hard in the garden, cutting back the clematis who has grown up the drain pipe and along the gutter, threatening to pull the whole lot down.  The garden has been sadly neglected over the last two years; it took us three days of climbing, cutting and collecting up greenery to get access to the roof for the builders who are due to do some maintenance, whenever.......

And also.....

Elizabeth and Roger joined us for a meal to say thank you for letting us stay in their Paris flat - we look forward to going back in the spring, all being well..

The law is an ass - a judgement in the Court of Appeal has opened up the door for insurance companies to avoid paying compensation to victims of mesothelioma arising from employer all now turns on the precise wording of the insurance policy - whether it covers injury "sustained" whilst employed or whether the policy covers events whilst employed, leading to injury in the future. Mesothelioma can take many years after exposure to asbestos to manifest itself.  The courts have held that the "injury" does not happen until the disease is diagnosed, which is long after the exposure event, and therefore policies which are worded to cover injuries sustained in employment do not cover diseases like mesothelioma which have a long gestation period.  It looks likely that this will go to the supreme court given the implications of the judgement - and seems likely to run and run....whether this will affect Steve's claim, we wait to see...

My next exhibition opens in Woodstock in a week's time, so we'll be busy printing and framing for a few days....

We have a visitor, Prue, staying over on Wednesday night, and we're all off to a meal at the Historic Towns Forum Annual Meeting, where our mutual friend Chris will be saying her farewells to the organization she has directed for so long.....

And last but not least....

A close friend very recently found our that he has a cancer of the lymphatic system, and is about to start chemo.  At least we can give him some idea of what to expect.  I hope that Steve's experience of mesothelioma will give him some assurance that a diagnosis of cancer is not the can still enjoy life, as we do - even though cramming it all in can be exhausting....Richard and Mary, stay positive!

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