Doing Something Positive is the story of Steve’s journey through mesothelioma from 2009 until his death in 2016.
I now find myself going through a cancer journey, and hope that doing something positive again will help me now as it did then. If nothing else, it will be a way to let family and friends know what's happening. I hope that sharing this experience will help others on their cancer journeys, be it mesothelioma or colorectal
The phone call came through yesterday...all Steve's test results are good; he's clear to start the new early phase trial. Early start this morning...no breakfast for Steve as he has to take the capsules on an empty stomach. No breakfast for me either...not enough time before leaving the house at 7.45am to get to the hospital in time for the appointment. We have been installed in Room 16, the one which has one of my photos on the wall - a good omen we hope? First off, more tests - blood pressure; ECG; urine samples and bloods...the usual problem finding a vein...one of the experienced nurses had to come and do it after the regular nurse gave up for fear of damaging the best looking vein. Then the doctor's examination and questions - no changes since we saw him last Thursday. The trial drug arrived at 11 am - three 50 mg capsules of AZD0424. No food for an hour after taking the dose. I had sneaked out for a coffee and toasted teacake, but poor Steve was starving by noon when he was finally allowed something to eat! At least he has a good appetite at the moment. We have spent the rest of the day in hospital. Eight blood samples are taken every few hours to see how the drug is absorbed into the blood stream. The last sample will be taken around 8 pm, so a VERY long day by the time we get home. I was lucky enough to go walkabout in the early afternoon for a change of scene. Steve stayed on the ward, reading, doing crosswords, surfing the net.... We are back again tomorrow for the 24 hour blood sample, and then another visit to take a research blood sample on Thursday. After that, it's weekly visits for tests, until the start of cycle 2 in 29 days time when we have another set of hospital visits three days in a row, including one very long day. And so that's the pattern of life for the next couple of months.... Only another hour, and we can go home!
As a child, I was given a musical box. When the lid opened, a little ballerina figure inside twirled to the music of "Ich hab mein hertz in Heidelberg verloren" (I lost my heart in Heidelberg). Little did I know back then that I would visit the city one day... We have just returned from a long weekend in Heidelberg, and I think we have left a little bit of our hearts behind...it's a wonderful city that knows how to celebrate!
The reason for our trip was to meet up with some of our photography friends, people we had not seen since Budapest last year. It was lovely greeting our "old" friends, and making some new ones! We all met up on Friday evening for a meal together, then joined in the fun on Saturday when the city was celebrating "Heidelberger Herbst" - a street festival to celebrate autumn. Stalls sell food and drink of every description and there is a flea market in many streets. Everyone is out enjoying themselves and having a great time, and so did we!
Stages are set up in the squares of the old town and you can enjoy every sort of music, from folk to rock, electronic to traditional, all day and into the night.
We enjoyed another meal together on Saturday night, before making our way back to the hotel via several live music stages and a drink or two.
We would have loved to have stayed longer, but a hospital appointments on Thursday for Steve's pre-trial tests and having to be home on Monday to wait for the call to say whether Steve could take part in the trial restricted the length of our visit. Sadly we had to say our goodbyes to everyone on Sunday, with big hugs and a few tears....All being well, we will see you all again next year if not before! The call came today. All Steve's test results were fine. He's on the trial, starting tomorrow. Hospital at 8.30 am. It's good to be doing something, although we are naturally apprehensive about side effects and whether the trial drug will have any positive effects on the meso. But if you don't try, you don't know....so here we go....again. Ta dah!
If all goes well, Steve will start his new drug trial next week and life will settle down in a gentle pattern based around hospital visits....I doubt whether there will be much excitement, just the anxious wait for side effects to show themselves...or not as the case maybe...and for the results of the scan after six weeks to see if the trial drug has had any effect. Before this lull in our daily lives, we have been fought up in a storm of activity over the last week, packing in as much as we can, while we still can... Two day trips to London over the "Open House" weekend, combining tours of interesting buildings not normally open to the public with social get togethers - our friend Sarah on Saturday and daughter Katie on Sunday. Two day trips to Bristol - one planned, to visit Steve's mum and do some shopping, the other unscheduled to do a bit of emergency maintenance on our son's house while he is in London. Two hospital visits, one to sign the drug trial consent form and have a baseline scan, the other for the rest of the pre-trial tests to make sure Steve is fit enough to take part. In between all these day trips, we've done a bit more work on the garden - some more plants in the ground and two garden storage boxes assembled and filled up with stuff. It's all coming together nicely! Tomorrow we are off on another adventure to a place we have never visited before to meet some "old" friends and make some new ones I hope. Last chance to get away before life revolves hospital visits. Have a good weekend, everyone, wherever you are ...especially the brave meso warriors x
As people in Scotland voted yesterday to decide whether to go it alone or stay in the UK, Steve also made a big decision. He will take part in the Phase 1 clinical trial currently on offer in Oxford. It's not specifically for mesothelioma but all solid tumours (i.e. any type of cancer except those involving the blood or lymphatic system). The trial drug is a biological therapy called AZD0424, made by Astra Zeneca. The trial is a joint venture between Cancer Research UK and Cancer Research Technology (CRT) and is being carried out in Oxford, Belfast and Edinburgh. AZD0424 is a tyrosine kinase inhibitor. It works by slowing down or stopping two proteins called Src and ABL1 which are naturally produced in the body. These proteins are involved in various parts of cell growth, cell invasion, metastasis (the spread of cancer) and the development of blood cells. Cancer cells have higher levels of these proteins than normal cells. It has been shown in the laboratory and in animal studies that AZD0424 blocks these proteins, preventing the delivery of nutrients to cancer cells via blood vessels, and thus helping to halt the growth of cancer cells and tumours. In other words, I don't think we can expect it to shrink the mesothelioma. However, we can allow ourselves to hope that it will slow the rate of disease progression or, better still, stop it growing altogether. The trial which Steve will be taking part in is the first time where the drug will be given to patients, alone and in combination with other drugs. It started in October 2012. The first patent was given a low dose, then the dose is gradually increased (dose escalation) until the researchers find the optimum dose in terms of effectiveness with tolerable side effects. The trial is due to finish in September 2016, so Steve is entering about three quarters of the way through - a good balance between potential effectiveness and side effects. If you want to find out more about the trial click here. There is more about the drug here, here, and here. Next week it's all the preliminary stuff; one hospital appointment at the start of the week to sign the consent form and have a baseline scan, followed by another later in the week for all the pre-trial tests. The trial itself will start the week after next. Wish us luck!
Since I last posted, some things have come to an end; other things are beginning and, as usual, ongoing stuff keeps rolling along... Work on the garden makeover had ground to a halt due to the non-delivery of some railway sleepers needed for the raised beds. However, it sprang back into action on Tuesday after the missing parts of the order were eventually found and delivered. Our contractor worked hard for the rest of last week to make up for lost time. To our delight, their part of the job was completed on Saturday! We now have a natural stone paved area where we can sit out, entertain and enjoy the fresh air, bordered by raised beds which will help maintenance and give us better views of smaller plants, while the railway sleeper edges will provide somewhere to put down cups of tea/coffee and glasses of wine while relaxing, as well as extra perching space for guests if needed. It's looking a bit bare at the moment, but is a perfect blank canvas on which to "paint" with plant colours, textures and shapes...the fun bit! It feels like we have now said goodbye to the old garden and are ready to make a fresh start on the new one, re-stocking with plants which will give us year round colour, interest and hopefully attract wildlife. Last Friday was my appointment for a nerve root block injection in the spine, carried out under a local anaesthetic with the help of X-rays to guide the needle. The procedure didn't hurt as much as we were warned it might (indeed, I wondered whether the radiologist had hit the target....) However, the difference since then is noticeable, so it must have worked! It's been so long since I was able to stand still for any length of time, or carry even a small weight any distance without having spasms of pain in my rear end and down my leg. The nerve root block has meant I can now do simple things like stand in a queue or spend an afternoon walking around with a camera without constantly being on the lookout for somewhere to sit down and stretch out for a bit of pain relief. Feeling like a new woman enjoying a fresh start! Friday's hospital appointment meant that we were unable to attend the funeral of our friend and fellow mesothelioma blogger Tess. As you would expect, it was a very emotional occasion by all accounts, not just for Tess's family but also for another meso blogger friend of ours, Mavis, who together with her husband Ray, represented the meso warriors and carers. Everyday since then has brought news of yet another warrior loosing their life to this awful disease. Too many life endings, which could have been avoided...But the fight goes on, as does the search for a cure. Being at home on Friday afternoon also meant that Steve was around to take an unexpected phone call from Dr Nick at the Clinical Trials Units with news that a slot has become available on an early phase trial. It's another dose escalation study (like the VanSel trial Steve took part in at the start of 2014) which has now reached the stage where patients are noticing side effects - usually a sign that the drug is working. We have been to the hospital today to find out more about the trial on offer, and took the opportunity to ask about an immunotherapy drug MK3475 which is currently showing promise for mesothelioma in a trial at the Royal Marsden. It was interesting - but frustrating - to learn that the same drug is being trialled here in Oxford, but only for people with myeloma. If he wanted to follow it up, Steve would have to be referred to the Marsden to see if he would meet the criteria for MK3475 (he may not be eligible due to a history of autoimmune disease) and, if so, whether a slot is likely to become available in the near future. We've come home with the paperwork for the trial on offer in Oxford and Steve is thinking currently considering whether he wants to take part. As Dr Nick says, the Oxford trial may buy him some more time...by then, immunotherapy drugs may become more readily and widely available. Other benefits of taking part in the Oxford trial is our proximity and ease of access to the Churchill Cancer Centre (the thought of traveling around the M25 to reach the Royal Marsden does not fill us with joy) and the fact that after treatment on and off over the last five years, we know the local team well and they know us. In addition, the scan to assess whether there has been a response to treatment happens after the first four week cycle of treatment, so not as long to wait to find out the results as on the VanSel trial when it was 10 weeks before we found out that it hadn't worked. If Steve decides to go ahead, I will post details of the trial on the blog at some point in the future. However, we may find ourselves starting a new treatment at the start of October. Another new beginning in the pipeline... In the meantime, life goes on and with it annual events to enjoy. Last Sunday, we hand a wonderful day out at the Prescott Speed Hill Climb set in glorious Costwolds countryside near Cheltenham. We are not petrol heads, but there is something very exciting about watching classic cars like Bugattis and other fast sports/racing cars, roaring up a short course which rises 200ft in just 1127 yards via a series of hairpin bends. Lots of good viewpoints along the course and the opportunity to see the cars up close and personal in the paddock. And enjoy an ice cream under cloudless blue skies in bright sunshine. A great day out!
On Monday and Tuesday last week, the annual St Giles fair came to Oxford. For just two days St Giles, one of the city's dignified historic streets, is closed to traffic becomes a chaos of loud noise, brash colours, bright lights, the smell of street food cooking and a heaving mass of people. The contrast with a "normal" weekday couldn't be more marked!
If you are ever in Oxford on the first Monday and Tuesday after the first Sunday in September, you must visit. On Friday evening, we went to a party in the Divinity Schools, at the Bodleian Library to celebrate the launch of the Oxford Photography Festival
We're looking forward to seeing some of the exhibitions over the next couple of weeks. This is the first such festival. Here's hoping it will be the beginning of another Oxford tradition! Saturday and Sunday saw yet another annual event in the city - Oxford Open Doors, when buildings not normally open to the public welcome visitors free of charge. Open Doors also coincides with our son's birthday, so after traveling from London where he is currently based to Bristol where his flat is, he came to join us in Oxford to finish off his birthday celebration. We spend yesterday morning visiting places of interest. Steve joined us for lunch in one of Oxford's oldest pubs, the Turf Tavern a 13th century ale house tucked away in the historic heart of the city, followed by a slow walk home to a birthday tea. So...all in all, a packed week, with endings, beginnings and lots of ongoings.... If Steve decides to take part in the Oxford drug trial, the next two weeks will be just as busy, if not busier as we try to fit in all those things which need starting or finishing in the foreseeable future. Once the trial begins, life would once again revolve around hospital visits and watching, waiting and dealing with side effects and everything else is likely to go on the back burner. We shall see...
Over the last 10 days or so, it feels like we have been through the whole gamut of emotions... Last weekend was a high, visiting our daughter and her partner in London. We met them for lunch at Tate Modern, went on to see the Matisse Cut Outs exhibition,
then walked along the Thames, over Tower Bridge and around the Tower of London to see the ceramic poppies spilling out of the building and around the moat to commemorate those who lost their lives in World War 1.
Rather than returning to Oxford as we would normally do after a day out in London, we had booked into a B and B near Katie and Ed's flat which meant we could enjoy an evening meal out together at Mosaica, part of a converted chocolate factory in the middle of an industrial estate, followed by a glass or two of wine back at their place before going back to our overnight accommodation, a short walk away. After a leisurely breakfast on Sunday morning, all four of us took the bus up to Alexandra Palace (or Ally Pally as it is affectionately known!)
to browse the farmers market, walk around the People's Palace and enjoy the expansive views over London, before going back to their flat for lunch then on to Paddington and home on the train. The high turned into a low when we read about the death of Tess, one of our meso blogger friends. Another reality check... The big garden makeover started on Monday morning, with contractors coming in to do the heavy work; taking up the remaining old paving slabs, digging out the base for the new paved area; filling it up with hardcore and a layer of sand then setting out the new paving. Most of the time we kept out of the way, working upstairs and letting them get on with it - just popping down when called if there was a decision to be made, or something to sort out. Progress was looking good when I left on Thursday for a work-related trip to Guernsey, but there was bad news on my arrival home on Friday. We had ordered and paid for railway sleepers a couple of weeks ago. These are going to be used to make raised beds around the paved area. When the contractors went to collect them on Friday, only 10 out of the 15 sleepers we had paid for were available. The rest had been sold on to someone else! Can you believe that? I was spitting feathers, especially when we were told that they had no more in stock and didn't know when the next delivery would arrive. AWBS - you have been named and shamed. This is not the way to conduct business or win customers. Without all the sleepers, we can't finish the raised beds, do the planting, finish the job and clean up the house (everything comes in and out through the house, so it gets mucky even with the greatest of care...) We went to AWBS yesterday morning to ask what they were going to do to sort out the mess they had got us into. The chap in charge on Saturday said he couldn't help, but he would ask the manager to contact us on Monday. I spent yesterday afternoon looking for a new supplier. We shall see what happens next week. These circumstances would be annoying at the best of times, but with a trip away planned later in September and the likelihood that Steve will be having treatment or one sort or another not so long after that, we can't let the job drag on. Once life is dominated by hospital appointments, everything else is likely to go on hold. We simply don't have the time to waste. SO frustrating... However, it wasn't all bad news this weekend. If you are a regular reader of the blog, you will know that from time to time I submit a photo to the Guardian Weekend Magazine in response to the weekly theme. If I'm lucky, its published in the paper or online. The grand total of my selected images was 11 up until yesterday morning, when number 12 appeared in the magazine, taking pride of place in the final "Your Pictures" feature. That put a smile on our faces - and a good note on which to finish the series.
Other highs included a meet up with old friends at on Friday night, and receiving a copy of the 1X yearbook Mono, which includes one of my images - a great honour.
Missing the launch of a friend's book on Wednesday was frustrating. However, an artwork project we have been working on with a mutual friend has turned out to be a success. Discovering we had left the freezer door slightly ajar and everything had melted was a bit of a downer earlier in the week, but its re-stocked now, so all's well that ends well. Setting aside the loss of yet another brave meso warrior, on balance, I think the highs and progress made over the last 10 days more than make up for the lows and the frustrations in this period. That's got to be worth celebrating. Today has been another high, but more about that - and some pictures - later in the week. Hospital appointments have been coming through thick and fast. Steve had his scan last Friday. I have a spinal nerve block injection next Friday. Two appointments have come through in early October for Steve to see the Clinical Trials Team and the consultant oncologist, then we have flu jabs in mid-October and a follow-up appointment with a consultant for me in December to see if the spinal nerve block helps relieve my back pain. For people who don't plan ahead very far, the diary is looking remarkably busy...
It's very rare for me to lift an entire article from somewhere else, but this article by Harry de Quetteville, published today in the Telegraph (not my usual read...) is worth quoting in full. It starts with a reference to Andrew Lawson, one of our meso friends, who was a wonderful source of information and support when Steve was first diagnosed with mesothelioma. If you want to see the original click here to access all the graphics and view video full screen. Thank you for taking the time to read.
ASBESTOS: THE KILLER THAT STILL SURROUNDS US
It’s been illegal for decades, but asbestos is everywhere, embedded in our homes, schools, offices and shops. It’s now killing more people in Britain than anywhere else in the world.
Andrew Lawson was the kind of man whose force of personality could shake things up, even in a gargantuan organisation like the NHS. A consultant anaesthetist, he devoted his career to sparing the sick both the agonies of illness and the torments of treatment. Among those who sought him out, his wife remembers, was an MI6 officer who had to live with the crippling after-effects of torture.
Lawson understood that while doctors are captivated by diagnoses and diseases, those being treated are overwhelmingly concerned with something else entirely: pain.
One day in 2007, however, he was the one who began to suffer. “I have not felt myself,” he wrote in May that year. “I’ve had difficulty in energising myself.” Struggling with flu-like symptoms, he found himself impatiently berating his wife, Juliet. “I want everything to happen sooner rather than later,” he noted. When Juliet went away on business for a week, Lawson found himself unusually, and unaccountably, upset. Something was up.
He got a colleague to perform a chest X-ray. Just two weeks earlier he had been skiing in the French Alps. The results of the X-ray came back. He had mesothelioma, an incurable cancer that affects the pleura, or lining of the lung.
With most cancers, it is hard to know the exact cause. Though some smokers get lung cancer, for example, not all lung cancer sufferers have smoked. But mesothelioma is different. In almost every case, the cause is exposure to asbestos – a fibrous building material once dubbed “miraculous”, but now known to be mortally dangerous.
For most of us, mesothelioma has been an easy disease to ignore. Asbestos, after all, is a product of the past. The most dangerous type of asbestos has not been used in Britain since the 1960s, when a voluntary industry ban came into effect. Even when it was used, only people in specific industries worked closely with it – pipe laggers, builders, carpenters and shipyard workers, for example. An industrial toxin from another era, it hardly seems cause for concern today.
But such complacency is misplaced. Britain, it turns out, is today at the peak of a mesothelioma epidemic. There are more mesothelioma deaths here than in any other country on the planet. With an annual toll of about 2,500, more than twice as many people die of the disease as die in accidents in motor vehicles.
BRITAIN'S MESOTHELOMIA EPIDEMIC
Mesothelioma annual deaths since 1980 and projected future deaths in Great Britain
The reason that we are feeling its deadly effects now is that, though asbestos use has been illegal for years (all types of asbestos were eventually banned by law in 1999), it usually takes decades for mesothelioma to develop. And the mesothelioma scourge is not confined to veterans of industrial building jobs. Asbestos has been, and in many cases still is, embedded in the homes we live in, the offices we work in, the schools we are educated in, and the stores we shop in. As a result, mesothelioma is no respecter of class, wealth, occupation, or age. The bastions of privilege, from smart London department stores to public schools, have proved no refuge. The Houses of Parliament are riddled with asbestos. Even the hospitals that are meant to make us better have been reservoirs of this deadly carcinogen.
Andrew Lawson was not old. Nor was he a pipe lagger. In fact, he struggled to think where he might have come into contact with asbestos. Then he put his finger on it. “It seems that there may have been a lot of asbestos in the tunnels at Guy's Hospital where I spent six years training,” he wrote. “Everybody - students, nurses, doctors and porters - used the tunnels. One wonders how many of my contemporaries will get the same disease?”
It was a question to which, sadly, he was able to provide a partial answer. “Of four doctors who trained at Guy’s Hospital and who subsequently developed mesothelioma in the past five years,” he noted in a letter in 2010, “I am the only one left alive.”
How many of us will get this disease?
Andrew Lawson was diagnosed with mesothelioma when he was 48. When he died, on February 17 this year, he was 55. To survive so long is unusual. Fifty per cent of mesothelioma sufferers are dead 8 months after diagnosis. It is always fatal.
So now we can only echo Lawson’s question: “How many of us will get the same disease?”
According to Britain’s leading expert on mesothelioma, Professor Julian Peto, our best guess is that between 1970 and 2050, when the asbestos epidemic in Britain should have played itself out, some 90,000 people will have died. Most currently have no idea that they will die this way.
An asbestos mine in Quebec, Canada Alamy
A quick glance at the reports from the courts, where those affected often turn for compensation, shows how far the scourge of mesothelioma has spread. This June, for example, Marks & Spencer admitted negligently exposing Janice Allen to asbestos. She worked for the chain for nine years, from 1978 to 1987, supervising clothes sections at two sites – one of which was the flagship store on Oxford Street. Mrs Allen was only 18 when she started working at M&S. Now she has two children in their 20s.
"Before this happened," she says, "I had never heard of mesothelioma, I barely knew about asbestos. I never would have dreamed that I would be affected by it."
Few people do know much about asbestos. In fact, asbestos describes not one substance but a group of six minerals. They get their name from the word “asbestiform” – which describes the fibrous structure which endows them with strength and flexibility. Of the six, three have commonly been used in the building trade.
Chrysotile, commonly known as White Asbestos, is by far the most frequently found in buildings today. It was used in roofing panels, floor tiles, pipe insulation, boiler seals, even brake linings in cars. It is less lethal than other forms of asbestos, but it’s still considered a “major health hazard” that can kill by the EU and WHO.
More dangerous, however, are Brown Asbestos (amosite) and Blue Asbestos (crocidolite). Britain was once the world’s largest importer of Brown Asbestos, and experts suggest that “there is strong but indirect evidence that this was a major cause of the uniquely high mesothelioma rate [in the UK]”.
A Marks & Spencer employee was exposed to asbestos at its flagship store in Oxford Street, London Alamy
Janice Allen may not have thought of herself as a typical victim of mesothelioma, but Julian Peto’s work suggests that her story is far from uncommon. He has produced a study of sufferers which suggests that “a substantial proportion of mesotheliomas with no known occupational or domestic exposure were probably caused by environmental asbestos exposure.”
Much of that exposure, he says, is due to “normal occupation and weathering” of our buildings. No one, it seems, can be sure that they are safe.
A report from Goddard Consulting, which looked at the Palace of Westminster, shows how people, even in the heart of government, might have been exposed unawares. In 2009 Goddard reported that service shafts and piping ducts behind Parliamentary committee rooms were contaminated with asbestos, whose lethal fibres could be disturbed by something as innocuous as “strong currents of air”.
MPs are frequently accused of looking after their own interests, but in this case it seems the opposite may have been true. While the Parliamentary Works Services Directorate insisted that the Palace of Westminster had been given “a clean bill of health”, it is now accepted £1bn of work lasting several years is required to overhaul Parliament, upgrading electrics and removing asbestos, and that after the 2015 general election MPs may sit in the nearby QE2 Conference Centre rather than on the Green Benches at Westminster.
The Goddard report noted that “the presence of asbestos has not been managed in accordance with the various regulations”. It is impossible to know if this mismanagement will cost lives. All anyone can do now is wait.
***
One person who has never been able to pinpoint his exposure to asbestos is Graham Abbott, a GP. Like Andrew Lawson, Abbott, 50, suspects that he was exposed to asbestos while working in hospitals. “I have worked at a hospital where positive asbestos claims have been made,” he says, “But I can’t prove it in my case. It’s so hard to remember all the places one has worked in, and the dates.”
What he remembers clearly is the day early in December in 2009 when he was overcome with what felt like a fever. He was 45, and in the middle of a late evening surgery. “Suddenly I started feeling shivery. It came on very quickly. I felt dreadful. I didn’t think I was going to be able to drive all the way home.”
Being a doctor, Abbott knew that the pain was coming from the pleura, the lining around his lungs. But like Janice Allen, he simply had no reason to suspect mesothelioma. He ended up spending a month off work. Puzzled doctors gave him chest X-rays, and administered pleural catheters to draw off fluid from the lungs and send it for assessment. Yet the condition went undiagnosed.
Slowly his health improved and he went back to work. But from time to time the same symptoms returned, often after he took exercise and was breathing hard. In 2011, one of Abbott’s patients arrived at his GP’s surgery with similar symptoms to him, and was subsequently diagnosed with mesothelioma. But even then Abbott didn’t make the connection with his own case. After all, his patient was decades older, and had worked directly asbestos. The link in that case was clear.
In September 2011, Abbott’s condition worsened again, and his consultant took his CT scans and X-rays to a panel of experts. In December 2011, exactly two years after Abbott started feeling unwell, a probe, equipped with a camera, was fed into the cavity between the lining of his chest and the lining of his lung.
“I’m an optimist. I tend just to plod along,” he says. “I hadn’t worried about it too much to be honest. But Rachel, my wife, was worrying.” The result of the biopsy came in the week between Christmas and New Year: “I was told it was mesothelioma.”
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GRAHAM ABBOTT: DIAGNOSED WITH MESOTHELIOMA
Suddenly Abbott was plunged into meetings with Macmillan nurses, one of whom suggested that he should get in touch with a lawyer. That was when he realised the scale of the epidemic.
“It turns out that asbestos was widely used, particularly in big public buildings which quite often had asbestos lagging on the pipes,” he says. “People who were exposed to asbestos in those buildings are now coming down with the disease. So mesothelioma is now affecting younger people not in the typical professions.”
The most dangerous asbestos-lagged pipes in hospitals were below ground level, so patients are unlikely to have been affected. But many staff, walking in pedestrian tunnels to get from one building to another (like Andrew Lawson), or eating in basement canteens (as Graham Abbott frequently did) almost certainly did come into contact with the toxic substance. For several decades after the war, it turns out, hospitals were potentially life-saving places for patients, but life-threatening places for the doctors who treated them. It is still being removed today.
Pupils perched their Bunsen burners on asbestos mats
And it is not just hospitals. Asbestos was frequently used in offices, shops, libraries and town halls for its marvellous insulating and flame-retarding properties. Schools too. In fact many people will have been first exposed to asbestos in the classroom. Up and down the country, in myriad chemistry lessons, pupils have perched their Bunsen burners on asbestos mats. Websites have sprung up to address the issue of asbestos in schools.Meanwhile, in our homes, items as innocuous as floor tiles or shed roofs have routinely contained asbestos.
“It’s an industrial poison built into large amounts of our housing stock,” notes Andrew Morgan, the lawyer who represented Andrew Lawson in his case against Guy’s Hospital. “In one case the only contact the woman sufferer could think of was pulling down a garden shed in the 1970s. So be careful how you pull down the garden shed.”
The impact of diagnosis, knowing that the disease is incurable, is huge. “It takes a while to sink in,” says Graham Abbott. “I went back to work and tried to carry on but realised that I couldn’t concentrate on what I was doing. I was at the surgery for two weeks. Then I realised that I would have to leave and sort myself out.”
"Well, I won't see Christmas again"
One of the hardest things was moving from the position of doctor to that of patient. Like countless patients before him, he remembers feeling bewildered by the amount of information to get to grips with. “It was hard to take everything in,” he says. “I asked my consultant ‘How long do I have?’ I was quoted about 12 months. I remember thinking ‘Well, I won’t see Christmas again. That’s it.’"
Mesothelioma is particularly pernicious, because it is the mechanics of how we stay alive – the very act of breathing – that causes the cancer that kills.
HOW ASBESTOS CAUSES MESOTHELIOMA
'Most Mesothelioma cases are caused by exposure to asbestos. Asbestos is made up of tiny fibres.'
'When the asbestos is disturbed and the fibres are inhaled, they can become embedded in the pleura, the lining of the lungs. Asbestos fibres irritate the pleura and can cause cell mutations.'
'Over the course of years (usually decades) this can develop into the cancer, mesothelioma. Once at this stage, the progression of the disease can be very quick, with most people dying within a year of diagnosis.'
“The problem comes from inhaled needle-shaped fibres of asbestos,” Professor Tom Treasure, a cardio-thoracic surgeon who moved in 2001 to Guy’s Hospital. (The very hospital where Andrew Lawson suspected he was exposed to asbestos is now, ironically, a leading centre in treating mesothelioma). Treasure knew Lawson, and treated some others who are likely to have been exposed while training at the hospital.
Once the asbestos needles get into the lung tissue, says Treasure, “the act of breathing pushes them on the periphery, which is where the lining is. It is by its nature invasive from the very beginning.”
The normal options for treating other forms of cancer work less well with mesothelioma. The effectiveness of surgery, for example, is hotly debated. Some feel it is worth trying. Treasure disagrees. “You can’t excise the pleura,” he says. ”You can’t get your knife round it.” Meanwhile the cancer “is not very responsive to chemotherapy”, which “has an effect” but does not cure. “Every now and again you get long survivors,” says Treasure. “But in the end they all die.”
Happily, some patients do live far, far beyond expectations. The author Stephen Jay Gould died 20 years after diagnosis. Two-and-a-half years after his own diagnosis, Graham Abbott is still battling on.
After contacting mesothelioma Abbott was put in touch with Andrew Lawson, who, four years after his diagnosis, had become a one-man support and advice bureau for fellow sufferers. “Hello, Cancer Central,” he would announce cheerily when they called.
“He was very positive,” says Abbott. “He had been diagnosed 4 years before and was still very active.” Initially, Abbott had been offered six cycles of chemotherapy that would take four months, and likely prolong his life by just one month. “I felt desperate,” he says. “I felt like giving up.” Lawson, however, “managed to put a slightly better tint on things.”
After seeing several consultants, Abbott decided to pursue his treatment with Prof Loic Lang-Lazdunski, professor in thoracic surgery at Guy’s. “We had an advantage in that I didn’t have to be referred, I just rang them up and they saw me,“ Graham admits. “The average patient would have to get a referral and have funding approved.”
Money is crucial for those with mesothelioma to pursue the best available treatments. But when those treatments eventually, inevitably, fail, many sufferers are faced with another financial worry - about the future of the families they will leave behind. And so they turn to the courts in pursuit of compensation.
Andrew Lawson contacted Andrew Morgan, from Field Fisher Waterhouse LLP. “It has been known that asbestos is noxious to health since 1898,” says Morgan. “But what changed in the 1960s is that it was realised that even very low levels could be a risk to health. That is where company negligence came in.”
Andrew Lawson and Guy’s hospital eventually settled their case, but it was not what Morgan calls a “full-value settlement” since Lawson could not prove definitively that his mesothelioma was down to asbestos exposure at Guy’s. After the inquest into his death, a spokesman for Guy’s did confirm, however, that “the asbestos in the basement area concerned was removed in the 1990s”. That was too late for Andrew Lawson.
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HOW TO REMOVE ASBESTOS
In fact, pinning lethal asbestos exposure on one company or place of work – usually decades after the fact – has proved a huge problem for mesothelioma sufferers seeking compensation. Many of their former employers have changed hands or gone out of business. Insurance records may have been lost. And those defending themselves from claims know they have time on their side, which the claimants certainly do not.
In response, this year has seen major new legislation which makes it easier for those with mesothelioma to claim compensation even if their former employers can no longer be traced. The law has created a £350m pot of money, funded by the insurance industry, for those diagnosed after July 2012 who can prove exposure but have no one to sue. In these cases sufferers will be awarded 80 per cent of what a court might have awarded in a normal compensation case – about £120,000. About 300 successful claims to the scheme are expected each year.
Andrew Morgan, like many involved with mesothelioma sufferers, thinks that £350m represents “a very good job” for the insurance industry. “It’s a deal written by insurers for insurers” he says, suggesting that the sum is a quarter of what insurers would have had to pay if the passage of time had not intervened, and mesothelioma sufferers were able to track down companies and sue them in the normal way. Even Mike Penning, then Works and Pensions minister, admitted that the law was “not perfect”. But both Penning and Morgan admit that, with seven victims dying each day, quick action was needed. “People are suffering so much, and need help today,” said Penning during the Mesothelioma Bill’s second reading in December last year.
By then, Graham Abbott had been in the hands of Prof Loic Lang-Lazdunski for 19 months. After their initial consultations, Lang-Lazdunski advised surgery which, in contrast to Tom Treasure, he believes has a positive effect. This was followed by radiotherapy and chemotherapy - a tri-therapy for which Lang-Lazdunski can boast five year survival rates as high as 40 per cent. Abbott felt empowered. “That of course is one of the most important things,” says Abbott. “You see it in patients all the time. There is some drive that keeps you going. When you give up you can deteriorate very quickly.”
Graham Abbott went in for surgery in March 2012. By the end of August he had completed the last of his six cycles of chemotherapy. Follow-up scans revealed no sign of the disease.
“Then I had my scan in March [2014]. There was multiple spotting [of cancer] around my chest. I was just about to turn 50.”
"It's not life threatening. It's life ending."
Once again Abbott put himself through six cycles of chemotherapy. Now there is no sign of the tumours. But the process is both physically and emotionally gruelling.
“You have to think about practical things – about the finances when I’m gone for example, or showing my wife how the boiler timer works. When you get bad news you start getting negative. You have to look forward.” As the father of Ellie, 16, and Tamsin, 14, that is not always easy.
“It’s hard as a parent,” he says. “It is difficult to know what to say and how much to say. When I was first diagnosed I told the girls that I had a condition that meant I wasn’t going to become old. They reacted very differently. Tamsin is very sociable and boisterous. She told her friends and we got lots of calls very quickly. Ellie was more reserved. She didn’t say much.”
Such conversations are something that all cancer patients must face. But for mesothelioma sufferers such discussions are not leavened by hope, by even a glimmer of a possibility of survival. The disease carries with it (even as it did, eventually, for Stephen Jay Gould) a grim certainty. As Andrew Morgan says, “mesothelioma is not life threatening. It’s life ending.”
A BRIEF HISTORY OF ASBESTOS
2500BC
Bodies of embalmed Pharaohs wrapped in asbestos cloths. Asbestos fibres used to strengthen cooking pots and provide greater heat resistance.
1st century BC
Pliny the Elder describes asbestos. "a linen has now been invented that is incombustible. I have seen napkins made of it glowing on the hearths at banquets"
c1850
Modern commercial asbestos use begins in Italy, where it is used to make paper (even bank notes) and cloth.
1880s
Major asbestos mines open in Canada and South Africa, and soon after in America, Itlay and Russia. It is an ideal insulator for the steam engines and and turbines of the Industrial Revolution.
c1900
Global asbestos production rises to more than 30,000 tons annually.
1918
Statisticians with Prudential identify premature mortality among those working with asbestos, who are subsequently refused life insurance.
1924
Nellie Kershaw dies in Rochdale. Dr William Cooke testifies that asbestos particles in the lungs "were beyond reasonable doubt the primary cause of death". It is the first case of its kind. Kershaw's employers, Turner Bros Asbestos, do not admit liability. No compensation is paid.
1939-45
World War Two sees intensive shipbuilding, one of the deadliest occupations for asbestos exposure.
1967
Voluntary industry ban on the import of Blue asbestos
1971
Court of Appeal confirms the first successful personal injury claim in Britain as a result of asbestos exposure.
1975
Global asbestos production rises to more than 4,213,000 tons annually. UK imports 139,000 tons.
1983
Health and Safety Executive in Britain requires all contractors working with asbestos to be licensed.
1985
Import and use of Blue and Brown asbestos banned by law in Britain.
1999
All asbestos use banned in Britain.
2014
Mesothelioma Act passed in the UK. A £350m compensation scheme is announced.
Asbestos is banned in more than 50 countries, but white asbestos is still used as a cheap building material in many parts of the world. Global production hovers around 2m tons annually.
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