Tuesday 23 March 2010

Action on the legal front

Wearing my work hat, I am used to being addressed by members of the legal profession as they present the case for their client.  Talking to a solicitor who is acting on your own behalf is a different cup of tea altogether!  

We went into yesterday's meeting with the solicitor feeling that it was probably a waste of time, but came out feeling rather more positive. However, we aren't counting the proverbial chickens yet.  There are four hurdles to clear for a successful claim for damages:

There has to be medical proof that Steve is suffering from an asbestos-related condition.  Although we have a written diagnosis of mesothelioma from the hospital, this will be verified by a disinterested third party who is an expert in the field. Steve will get an appointment to see Professor Robin Rudd at the Royal Brompton Hospital in London, who will have all the tests results at his disposal. It will also be an opportunity to find out more about other treatment options available in the UK and abroad, something we had wanted to discuss in detail at Steve's last assessment but didn't really get very far with. Sadly, there should be no problem clearing this hurdle.

We have to show that Steve's condition was caused by exposure to asbestos fibres.  There being no other known cause for mesothelioma, this should not be an insurmountable barrier.

We have to show that one of Steve's previous employers was negligent in exposing him to asbestos; in other words, they failed in their duty of care. This is the biggest hurdle. We spent a long time going back through Steve's employment history and, to cut a long story short, the solicitor takes the view that the most likely exposure to asbestos was in December 1971, when Steve was one of a number of architectural students involved in the demolition of partitions at what was then Oxford Polytechnic - now Oxford Brookes Uni - to create one large open plan studio on the top floor of the building housing the Schools of Architecture and Town Planning.  

My research had shown that the building in question has been designed and built in the mid-1950s, a time when asbestos was widely used in the construction of educational buildings because of its fire-retardant benefits. Frustratingly, although the materials used in the partitions between studios are specified on the Building Regs drawing, there is no such specification for the partitions separating the studios from the central spine corridor, which were also demolished to open up the space. I thought that would be the end of the story.  

However, the solicitor has engaged a specialist consultant on the use of asbestos.  He advises that as the central corridor would have been the protected escape route in the event of fire, it's highly likely that the partitions would have contained asbestos.  This view is reinforced by the Building Regs file note attached to the drawings which highlights issues about unsatisfactory means of escape, and unsatisfactory fire resistance generally, suggesting that more fire retarding measures would have been incorporated into the finished structure than shown on the drawing.  This evidence, together with an extract from the floor plan which makes it possible to calculate the length of partitions demolished will be sent to the consultant to confirm his view about the use of asbestos.  

The test in a civil case like this is the "balance of probability," rather than "beyond reasonable doubt" as in a criminal case. Unless the expert witness changes his mind when he sees the copy of the file note and plan extract, the solicitor feels confident that we can show that some of the partitions which Steve removed contained asbestos which was released into the air when demolished.  

The expert's evidence, plan extract and copy of the file note is supported by prints from a couple of old slides which shows Steve actually doing the work, lump hammer in hand, and another student standing by a heap of timber, which would have been from breaking up the partition frames. A friend who was part of the demolition gang will confirm that Steve was there. He also recalls pulling down panels (which may well have contained asbestos) from the suspended ceiling in the old corridor.  Another friend recalls that it was a paid job, probably cash in hand, although he didn't take up the offer.  I bet he's glad he didn't!

Witness statements and the photos will confirm that there was no protection of any sort to prevent asbestos fibres being breathed in, or toes being crushed, or things falling on heads - it's a wonder they emerged (mainly) unscathed, thinking about it, and indeed that the whole building didn't collapse given the rather haphazard way the work was carried out, from the accounts I've heard!

So we have the likely cause of exposure to asbestos over the week the demolition work was carried out, and the lack of protection to prevent asbestos particles being breathed in.  Unless the expert witness changes his mind, it looks like there is a very good chance of clearing the negligence hurdle.

At the time the partitions were demolished in late 1971, the harmful effects of exposure to asbestos leading to asbestosis were well documented, even if awareness of mesothelioma was less well known.  Councils were regularly sent health and safety advice which would have alerted them to the risk. The "employer" should have therefore foreseen the dangers of working with asbestos and prevented Steve, and the others involved, being exposed. The last hurdle of foreseeability should not be difficult to clear.

So what happens next?  

Steve will be sent a revised witness statement to sign.  The solicitor will contact our friend to ask him to confirm in writing what he has discussed with Steve over the phone. All the information will be sent to the expert witness for his formal evaluation and statment.  Steve will get an appointment at the Royal Brompton to see Prof Rudd.  All the documentation will be sent to the "employer" with a deadline to respond and, assuming there is no response or the claim is denied (which appears to be par for the course), papers will be lodged at the Royal Courts of Justice where the sitting judge is very experienced in dealing with mesothelioma claims.  If we get to that stage, the chances are that there will be an out of court settlement at the last minute.  

Damages are assessed on the basis of pain, suffering and loss of amenity (at least I think that was the phrase) and loss of potential income.  Given Steve's current condition and the fact that I am the major breadwinner in the household, we would not expect to receive a huge amount in damages if the claim is successful, but probably more than Steve received under the Government scheme (which would be paid back - you don't get both).

No amount of money could ever compensate for cutting short a life, what lies ahead for Steve, and the impact this disease has had on us, the wider family and close friends. However, it could be used to fund treatment outside the NHS and adapt the house to meet Steve's changing needs, so we will press on with the claim if the legal advice is to do so.  

Today's lesson in legalese is now over - time for food, I think!

Sunday 21 March 2010

What a relief!

Inspired by the brave souls who crossed the channel on water skis, cycled the length of the UK and visited all the Six Nations rugby tour stadia by bike - not to mention Eddie Izzard's marathon of marathons - we decided to do something ourselves for Sport Relief today.  

Rather than run one mile, we walked about five and a half miles to the Trout PH and back, stopping in the middle for a spot of lunch at the pub.  Our journey out took us along the west bank of the Thames where we were delighted to see a red kite flying low over the local allotments.  Perhaps it will visit our garden soon, like the jay that appeared in next door's tree yesterday, the wood pigeon who seems to be making up a nest in the clematis outside Steve's workroom window, and the coal tits and goldfinches who have been passing through recently. We came back via Port Meadow to enjoy close encounters with flocks of geese, and the horses and ponies grazing on the meadow.  

This was the route of our Boxing Day walk, when Steve had been aware of tingling and numbness in his fingers and toes, but it had not become the problem it was to develop into later, in January and February.  As well as doing our bit for Comic Relief, today's trip was a test to see whether he could manage walking further than into town and back, in readiness to undertake an 8 mile walk in the Peak District next weekend to celebrate friend Andy's 60th birthday.  We think the answer is yes, provided we can plan in an escape route for emergencies somewhere along the line! However, it will be a bit of a challenge for the knees as much as the feet and toes.  The body has seized up a bit after spending so much time sitting around in hospital having, and recovering from, chemotherapy. You'll have to watch this space to see if Steve makes it!

Some other bits of news - Steve's now edited his last issue of the West Oxford Newsletter for the local community association.  It's not that he's too unwell to continue to do it, just doesn't want to be tied down to deadlines in the future - it stops us being more spontaneous, which is what we're aiming for now.... He said his good bye on the back page, alongside a little bit about my photo of the local allotments winning the RHS Photography Competition.  The RHS result is also featured in this week's edition of Amateur Photographer magazine and the current issue of Gardening Which?  Fame at last (!) Plus, I've had two images selected for Fotoblur Issue 5 Spring 2010, which has just been published http://www.fotoblur.com/magazine

Tomorrow we have a visit from the solicitor who is dealing with Steve's claim for compensation.  Not sure why he is coming, other than that he wants to see the client face-to-face...up until now, it's all by done in writing, by phone and via a third party (the chap who does all the legwork for the solicitor).  I think he will have a surprise when he sees how well Steve is looking for someone classed as 100% disabled.  

However, whilst remaining positive, we cannot overlook the fact that at some point in the future, life will get tougher. That was brought home to me when I read an article in the Guardian on Saturday by Lionel Shriver, the novelist who won the 2005 Orange Prize for Fiction. Her latest novel, So Much For That released on 2 March, Steve's birthday, was inspired by her friend Terri, who died of mesothelioma. The article is about her relationship with Terri and how it changed after she was diagnosed with a terminal illness. Please read it, if you can spare a few moments, but take a deep breath first:


Tuesday 16 March 2010

Nine months on and still going strong

When I started writing this blog in June 2009, I had no idea of how long it would go on.  In the darkest hours, when the anxiety levels had gone off the top of the scale and it was difficult to see much hope in the black gloom which opened up in front of us on 16 June, I wondered whether I would still be writing it in 2010. 

With a "median" survival rate of 8 months, based on statistics for the meso population as a whole, you can appreciate one of the things feeding those fears.  Being assessed as 100% disabled fueled our concerns about the aggressive nature of mesothelioma and how quickly Steve's health might decline. 

But here we are, nine months since diagnosis, and Steve is still going strong. The numbness in his fingers and toes (a side effect of chemotherapy) continues, but doesn't seem to be getting any worse.  We only fully appreciated just how badly some people can be affected, when the doctor asked last week whether he was able to do up a small button without a problem (which he can).  She also warned him about wearing sandals in the summer, incase a bit of grit became trapped under the sole of his foot causing a sore to develop, unnoticed, because of the lack of feeling. Thank goodness Steve's numbness isn't that bad.  

The cancer itself is stable - still just in one lung and no noticeable change in Leo's size in the last nine months.  We had initially hoped for some tumour shrinkage when Steve joined the Velcade drug trial, and had felt somewhat let down when that didn't happen. However, as his day-to-day life is not affected by pain or breathlessness, stabilizing the cancer at a level which he can live with "normally" has to be welcome news. Whether this stability can be attributed to the chemo and/or the supplements he is taking to help boost his immunity, we don't honestly know. The good thing is that it IS stable, and there are treatment options available which ought to help slow down progression in future.  

Which brings me back to statistics. Andrew Lawson, a doctor with mesothelioma, that we've been in contact with recently, pointed us to an article entitled "The median isn't the message" - a personal story of statistics by an American Scientist called Stephen Jay Gould, who was diagnosed with mesothelioma at the age of 41. I'm not going to give you a blow by blow account here, but will happily pass on details to anyone who would like to read it. 

The bottom line is when it comes to statistics, means and medians are abstracts.  The curve of variation on either side of the median is not symmetrical.  To the left is the "short tail" - those poor souls who die within eight months of diagnosis, including some who are not diagnosed until close to, even after, death.  However, the right hand side of the curve - those who live longer than eight months - is much more stretched out.  Indeed the right side "tail" can, and does, extend for years. Steve is now firmly on the right hand side of the curve and has a lot going for him:

  • epithelial mesothelioma (the type Steve has) is associated with increased survival rates and a better response to treatment efforts than the other major sub-types, sarcomatoid and biphastic 
  • he was diagnosed early 
  • he has access to good treatment, including drug trials 
  • he's in his early sixties, rather than 70s or 80s; in good general health otherwise, has lots to live for and a passion for life   
.....Not forgetting a wonderful support network which helps both of us.  Please be there for us over the next nine months, and beyond!

Thursday 11 March 2010


The happy face says it all!  

This morning's X-ray at the hospital did not show any discernible change in Steve's mesothelioma. The cancer continues to be stable (no change in almost nine months, now) and we don't have to go back for another three months, unless Steve develops a problem in the meantime.    

The other good news is that Jack's Half Marathon run in Bath on Sunday raised £569.30 (via his just giving page, cheques and cash).  When Gift Aid is added on, that will be worth around £700.  And we have yet to donate :-)  A big thank you to Jack for your efforts, and to all who sponsored him - we really do appreciate your support

So....plenty to celebrate tonight!

The only fly in the ointment was not being able to have a good long discussion about treatment options.  The consultant wasn't there today. The registrar is new, so not familiar with Steve's case. She couldn't tell us what drug trials were in the pipeline, in Oxford or elsewhere. She wasn't able to give a detailed explanation as to why he wasn't considered suitable for surgery, only that the surgeons were present at the multi-disciplinary case conference and would have suggested that option if they thought it would help. 

However, she thought that as the one affected lung would have been "soaked" in the cancer cells which were present in the pleural cavity fluid last year, this would have made it difficult to remove all cancerous material. Indeed, an operation might have stirred things up, making it worse rather than better. That seems to make sense, although as diffuse mesothelioma is just that - diffuse -  I still find it difficult to understand why patients with the same disease are routinely operated on elsewhere in this country, and abroad.  

Had we been keen to follow up this option, I think we would need to talk to someone else to get a better understanding of the pros and cons of surgery.  However, neither of us find the idea of Steve's lung (and other bits) being removed very appealing.  I think we'll let sleeping dogs (or Leo in the case) lie, for the time being at least.  

One other interesting thing came out of this morning...Nicky (Steve's MacMillan nurse) mentioned the name of a doctor in Reading who had been diagnosed with mesothelioma a few years back and had written some interesting articles about his experiences on the Times online.  I have added a link top right....

So, here we are again - the anxiety levels that had built up as this morning approached are now going down, and we can begin to look ahead again just a little.  We have even bought some Sports Relief socks in anticipation of just possibly taking part in the Sports Relief mile on 21 March (always assuming the weather is set fair and we can squeeze into our running kit that was abandoned last spring!)

Wednesday 10 March 2010

where do we go from here? Part 3 chemotherapy and other therapies

I've talked about surgery and radiotherapy in the last two blogs, so today I'm looking at the third arm of the tri-modal approach to mesothelioma treatment - chemotherapy: the use of anti-cancer or "cytotoxic" drugs to destroy cancer cells.  I'm also going to run through some of the other therapies that are in development, as well as complementary and alternative therapies (CAT). 

Take a deep breath if you intend to go through this lot - it's a lengthy read with lots of weird words that you won't recognise.  However, writing it has helped me sort out a few things in my own mind....

How it works
Cytotoxic drugs circulate in the blood throughout the body, damaging dividing cells, including cancer cells which divide much more often than normal cells.  However, they also affect those healthy body tissues where cells are constantly growing and dividing at a fast rate, such as skin, hair follicles, bone marrow and the lining of the digestive system, which explains the side effects of chemo.

The standard treatment
The most commonly used combination of chemo drugs for pleural mesothelioma are pemetrexed (brand name Alimta) and cisplatin.  This is the combination that Steve would have received, had he not taken part in the Velcade drug trial. It is still there "on offer" as a first-line treatment on the NHS, should action be needed to keep Leo under control. However, these two drugs are particularly toxic to the body and Steve has already experienced the side effects of cisplatin.  So, are there alternatives?

Other chemo drugs and drug trials
The scientific journal Lung Cancer recently reported (February 2010) the results of an investigation into the possible benefits of a different combination of chemo drugs for mesothelioma patients, pairing pemetrexed with a different drug, carboplatin.  Based on a study of 49 patients, the majority reported a benefit after two cycles of treatment and also reported that toxicity was relatively low.  The median survival rate in that study was 14 months, slightly greater than the comparator group who took pemetrexed and cisplatin, which had a median survival rate of 12.1 month. Whilst not a huge difference in outcome, it seems that this combination may prove to be less toxic and more effective than the usual regime - something worth discussing tomorrow?  

That said, the results of a German study (December 2009) based on a much larger sample found the median survival rate of patients receiving the standard pemetrexed/cisplatin combination to be better than those being treated with carboplatin/pemetrexed (11.3 months as opposed to 9.7 months).  Not so good news.  However, the ray of hope here is that pemetrexed is effective in those who have already had chemotherapy, albeit to a lesser extent than on patients who had not been pre-treated. It can therefore be used for "maintenance" as well as a "first line" therapy, with potential benefits for someone like Steve.

Another ray of hope for second-line treatment is a drug called Oxaliplatin (AKA Eloxatin).  In 2008, the Journal of Occupational Medicine and Toxicology published research on a clinical trial of 29 patients who had been previously treated with Cisplatin and Pemetrexed.  These patients receiving three cycles of second-line treatment with Oxaliplatin and another drug, Gemcitabine reported partial remission in 6.9% of cases and a stable disease in 37.9% of cases, a control rate of 44%.  Just as important, the patients tolerated the treatment well, with no significant toxicities or side effects.  

Worldwide clinical trails (VANTAGE 14) are now taking place of a drug called Vorinostat (aka Zolinza) as a second line treatment for mesothelioma for patients who have already received pemetrexed combined with cisplatin or carboplatin - one to keep an eye on in the future.

Back in the UK, a Derbyshire man was recently the first person in the world to be given a new drug LDE 225, in a trial being carried out in Leicester, at the Royal Infirmary. The drug targets only cancer cells by cutting off the protein which such cells need to grow and divide.  Although too early to speculate on the effect of the drug, early signs are encouraging. However, to take part in the trial not only must patients be very fit, there must be no other treatment option available - which sounds like it's very much a last resort....so not one for Steve, for the time being at least.  

Chemoembolization and hot chemotherapy
I can't ramble on about chemotherapy without referring to chemoebolization, as pioneered for mesothelioma patients by Professor Vogl in the J W Goethe University Hospital, Frankfurt.  Put very simply, this a technique for introducing chemo drugs into the patient's system via a sheath inserted into the femoral vein, which is then pushed forward into the vessels which supply blood to the cancer. This approach concentrates the drugs in the area of the cancer for a couple of weeks, rather than allowing them to roam all over the body via the blood system.  Using this technique, doctors are able to use a concentration of cytotoxic drugs up to 20 times higher than normal, with reduced side effects.  
Debbie Brewer from Plymouth is the living proof that this technique can be very effective (link to Debbie's blog, mesothelioma and me, on the right).  

We talked about this technique with the Oxford doctors not long after Steve was first diagnosed, but from a position of relative ignorance. The doctor we spoke to did not appear to be aware of it, and dismissed it out of hand when he heard that patients had to pay the costs, saying that proper clinical trials are free.  I think we need to go back tomorrow armed with more information to discuss this approach in greater detail, now we know rather more about that is involved, have the reassurance that it is a bone fide, ongoing clinical trial and in the knowledge that some PCTs have funded at least one cycle of treatment.  

Thermal therapy/chemo-hypothermia
Administering chemo drugs diluted through a drip, directly by injection or indirectly by chemobolization are not the only methods of delivery. Apparently, heating increases the metabolic rate of cancer cells and they are very active sucking up the poisonous chemo drugs.  Based on this, following surgery, doctors sometimes fill the chest cavity with hot chemotherapy to give the lungs a good soak. A similar approach can be taken by heating chemotherapy drugs prior to injection.  If it increases effectiveness of the drugs, I'm not sure why this isn't done as a matter of course.  A question for tomorrow, perhaps?

A recent announcement online that has got the meso world buzzing is a "vaccine" against mesothelioma, which has shown early promise in its first clinical trial. The vaccine is an example of dendritic cell (DC)-based immunotherapy, in which the bodies own immune system is harnessed to target and destroy cancer cells.  It works by taking samples of the patient's own dendritic immune cells, mixing them with proteins from the meso tumour and implanting them back into the body.  There, the mixture activates other elements of the immune system (known as T-cells) and encourages them to attack and destroy the tumour.  

Researchers in the Netherlands used this approach on ten mesothelioma patients and found an immune response in all. After three further injections over a two week period, tests on four of the patients showed that tumours had shrunk. Other than flu-like symptoms which disappeared in 24 hours, there were no serious side effects.  Given the small size of the sample, clearly more testing and research is required before its effectiveness and viability as a treatment has been proven.  But it looks promising....

Other therapies
There seems to be evidence that some families are more likely to develop mesothelioma than others, suggesting that genetic make up could affect your risk of getting mesothelioma.  Gene therapy is one area of research where work is ongoing, but it's in its early days.

Other biological therapies - using substances made naturally by the body to fight cancer - is another area of research actively being pursued.  Some of these therapies work by stopping tumours being able to grow blood vessels, some by blocking the chemical signals that tell cancer cells to grow; other therapies damage the cancer cells direct.  Early trials of a drug called Arenegyer (NGR-h-TNF) suggested that this drug seems to control mesothelioma for a few months and improves survival rates.  It's now moving into phase III trails to see how well it works on a larger sample. The Velcade drug trial which Steve took part in is another biological therapy.  Not long to wait now to see whether that continues to help keep the cancer stable.

Photodynamic therapy (PDT) is a relatively new treatment for some types of cancers. A photosensitizing agent is injected into the blood stream and absorbed by the body's cells, making them sensitive to light.  When the area to be treated is exposed to lazar light, the cells are killed.  This approach has to be combined with an operation to treat mesothelioma. Although PDT has been shown to be safe with other types of cancers, its use in phase I and II trials for mesothelioma has resulted in major complications in a few cases.  Consequently, doctors haven't widely accepted its use for mesothelioma and it's not available in the UK.

Although not part of mainstream medical practice, some meso patients have found complementary and alternative therapies (CAT) useful.  

  • acupuncture, massage and TENS therapy can help relieve pain  
  • meditation can help reduce pain and stress
  • ginger treats nausea and vomiting cause by chemotherapy
  • mistletoe extract (Iscador) is supposed to stimulate to the immune system; it has been used with some success in the treatment of malignant melanoma and breast cancer, and there is a small but growing number of meso patients giving it a go, including Debbie Brewer and Ronny Hill (whose blogs you can access from the links at the top of the page)
  • vitamin C to boost the immune system is controversial - it has been used with good results on cancer patients in some studies, but researchers have been unable to replicate the results in other studies
  • other dietary approaches, including consuming fruit and vegetables daily, eating lean rather than fatty meat, and ensuring antioxidants in the diet are known to reduce stress and improve the body's overall health 
  • herbal remedies such as astragalus and echinacea are also favoured by some - the former is the dried root of a plant native to northern China, used mainly in China to supplement chemotherapy to inhibit the growth of the tumor and decrease the toxic adverse effects of chemotherapy.  The latter you will probably be more familiar with - it's an immune boosting herb which triggers the production of inerferon and, some believe, aids the body to combat diseases such as cancer
  • an extract from the edible mushroom Agarious blazie Murill Kyowa (ABMK) helps to regulate the immune system; it is used widely in Japan for medicinal purposes.  An article in the Journal of Medical Case Reports highlights the case of a 73 year old meso sufferer, whose tumour regressed then completely disappeared following self-administration of ABMK
  • cat's claw (uncaria tomentosa) is a tropical vine native to South America; various studies have yielded inconsistent results, the positive result being for breast cancer
  • ozone therapy - ozone is an activated form of oxygen; there is scientific data that cancer does not flourish in a richly oxygenated environment. However, there is little published literature on the safety and efficacy of ozone therapy in cancer treatment.  A 1991 study found that in combination with a carcinogen, ozone can favour the development of tumours, but ozone exposure following exposure to a carcinogen inhibits tumour development
So there you have it - if you have managed to plough your way through the blog for today and the last two days, you'll know as much about the options as we do.  

Whether we have the opportunity to go through all this at the hospital appointment tomorrow, or whether we will have to ask for a longer time slot remains to be seen....

I can't finish today's blog without sending our love to Felix, Janine and Sam - we are thinking of you all, and keeping our fingers crossed that Felix will make a speedy and full recovery

Tuesday 9 March 2010

Where do we go from here? Part 2

Yesterday, I tried to pull together some thoughts about surgery as a treatment option.  Today it's the turn of radiotherapy.  

As far as I can make out, there are two types of radiotherapy : external beam radiotherapy (EBRT) or intensity modulated radiotherapy (IMRT) where computers control the radiotherapy machine to give a very specific dose to a cancer or specific areas of a tumour. Research in the USA indicates that patients who receive IMRT appear to have a lower risk of cancer recurrence (14.3%) compared to EBRT (41.7%).  If Steve has a choice between the two, then clearly it's a no-brainer.  IMRT has the advantage that it can better target the cancer whilst sparing nearby organs from radiation exposure.  

Those of you who have followed the blog from early days will know that Steve has already had radiotherapy on the "ports" where the chest drain was inserted and the biopsy taken back in June, 2009.  This procedure reduces the risk of the cancer seeding into the scar tissue, which is a vulnerable area.  You can still see two circles where the exposed skin is a different colour from the surroundings, although the bright red sun burn colour has long since faded.  

In November 2009, researchers from Melbourne, Australia, reported that new radiation techniques may improve the life expectancy of mesothelioma patients.  This technique involves using higher-than-normal doses of radiotherapy, made possible by advances in technology and better equipment.  In the pilot study, on average the treatment has given patients an additional two years life expectancy, with no major side effects.  Where the cancer has retuned, it has appeared in a different place, enabling the same technique to be used again. Something to explore further with the consultant on Thursday, possibly...

Tomorrow, it's time to look at chemotherapy....

Monday 8 March 2010

back to reality and where do we go from here?

After all the excitement of the extended birthday weekend, it's back to reality with a bump today.  

Poor Jack is suffering badly with the after effects of yesterday's half marathon run to raise money for Cancer Research. However, in spite of the very limited amount of training he managed to fit in in the lead up to the race, he still managed to finish in 1 hour 41 minutes (not far off a personal best) and well within the top 20% of runners, according to the unofficial timings posted today.  Still waiting for news of how much money he raised....

We are both getting  somewhat anxious about this week's hospital appointment, when we will find out what Leo, the cancer, has been up to these last three months.  Although we promised ourselves that we would go armed with a list of questions about treatment options, we still haven't sat down together to prepare.  I think we've been putting it off because it means facing up to the reality of Steve's situation, which is a very sobering thought after such an enjoyable weekend. Perhaps the best way for me to organize my thoughts on each of the options we need to discuss is to think aloud in the blog.  If you want to know more about my understanding of the treatment options, read on. If not, come back on Thursday for news of what happens at the hospital.

The bottom line is that, at present, there is no known cure for mesothelioma;  treatments are aimed at extending and improving quality of life.  All the research we have come across so far seems to indicate that the most effective way of improving survival rates is tri-modal therapy - a combination of surgery, radiation and chemotherapy. Today, I'm going through the surgery option....

There are two surgical approaches: extrapleural pneumonectomy (EPP), which is the complete removal of the affected lung, the pleura, diaphragm and covering of the heart (pericardium).  It goes without saying that this is a major operation: two weeks in hospital then 6-8 weeks to recover. Steve recalls his Oxford doctor saying that some people never really get over the operation.  Indeed, 5-10% patients die during or just after the operation.  It seems that's one of the major reasons the Oxford team don't favour this option. 

In any event, the operation isn't suitable for everyone. The patient must be fit enough to walk up two flights of stairs without getting breathless (no problem there for Steve) and the meso must be at an early stage - not have spread into the lymph node or any other areas outside the affected lung. When last assessed, Leo was in one lung.  However, the only way to tell if the lymph node is affected (as far as I know) is by an invasive procedure that itself carries risks. The Oxford team don't think these risks are worth it.

After all that, there is no guarantee that the operation will remove all the cancer cells for the simple reason that the tumour is diffuse rather than a self-contained lump.  And microscopic asbestos fibres can still be left behind in the body to start the process all over again.  More reasons why the Oxford team don't favour this approach.  However, studies in USA and Australia have found that this type surgery can improve survival rates and it is used more widely in other parts of the UK, including St Barts and by the University Hospitals Leicester, which is a centre of excellence for mesothelioma.  The reasons for this may be something we ought to probe in more detail at the appointment.   

The other surgical option is a pleurectomy/decortation (PD), which can help control symptoms caused by the build up of fluid in the lung and can help relieve chest pain. Although a major operation, it can be done by keyhole surgery leaving three small wounds each about a 2 cm long. These provide the surgeon access to take away as much of the meso as possible by removing the the outside covering of the affected lung (the pleura) on one side of the chest only. It means a hospital stay of a week or so, then another 4-6 weeks to recover. 

When last assessed, Steve did not have any fluid on his lung and he is not suffering with chest pain at present.  Unless or until that changes, there doesn't seem to be much point pursuing this option at present. 

However, an article published in the journal of the European Association for Cardio-Thorasic Surgery reports on a study which reviewed three decades worth of surgical experience. This study found that the longest survival rates (a median of 26 months) were observed in patients who underwent PD, followed by both chemotherapy and radiotherapy, regardless of whether the disease was advanced or patients surgically less fit.  Given a choice between EPP and DP, the latter is would therefore appear to the preferred option.  

According to another study published in the medical journal Lung Cancer (December 2009) the overall median survival rate for patients who under went DP, followed by chemo and radiotherapy, was 30 months compared to 18 months in the general meso population. Which appears to confirm the benefits of the tri-modal approach.

The statistics make horrible reading for someone who is fast approaching nine months since diagnosis, so you can understand why we are getting a bit twitchy. However, we remind ourselves that the median survival rate statistics take no account of age, fitness and general state of health, type of mesothelioma (there's more than one!) or stage reached when diagnosed. Can't be ignored, but ought not to be be applied crudely to an individual.  

Tomorrow's blog will be about radiotherapy and much shorter - I can almost hear you heave a sigh of relief!

Sunday 7 March 2010

packing it all in

What a weekend!  It started with an unexpected phone call from the Royal Photographic  Society (RPS) on Friday to say that a visitor to the RPS International Print Exhibition currently on show in Bath, wanted to buy a print of Steve's Tulip Sky image (see blog 25 September 2009).  How nice! As it happened, the would-be purcasers lived in Bristol, so we could deliver the picture this weekend....

But before then, we had a second birthday meal at home for Steve on Friday night, this time with our daughter Katie and her partner George, back in Oxford for the weekend (and an early Mother's Day celebration for me). 

Saturday saw us in Bristol, starting with a visit to Steve's mum to wish her a happy Mother's Day for next Sunday, then on to deliver Steve's print to Redland, where it will be living with some very fine artwork, from what we could see. A brief pit stop at our son Jack's house to drop off our overnight bag, before joining nephew Nick, his partner Kate and baby Esme for a third birthday meal for Steve - is this the longest birthday on record???

Sunday morning we were up relatively bright and early, to catch the train from Bristol to Bath, where Jack was one of 11,000 or so runners to brave the bright but very cold conditions to complete the Half-Marathon.  Although not a personal best, considering that he had only done five practice runs (none of which were to the full at the full 21 km length) Jack did very very well - and here he is to prove it!  

Before leaving Bath, there was just enough time for a very brief encounter with our niece Heather and her son Zac, to hand over Zac's present for his 2nd birthday.  Runners were still out on the course as we headed back to Bristol on the train....

Full details of the time and amount of money raised soon! Our grateful thanks for all of you who sponsored him to raise money for a very worthy cause, and to Jack for his energy, enthusiasm and commitment!

Back in Brsitol, it was time for a long well-deserved soak in a hot bath for Jack, a doze on the sofa for Steve, and a short break for me to catch my breath before we headed home again.  It's not that often we manage to pack so much into one weekend, but what fun!  Time for bed now, exhausted but happy :-)

Wednesday 3 March 2010

change of plan

After a relaxing day yesterday, we have been psyching ourselves up for Steve's CT scan and X-ray tomorrow.  He's not supposed to eat anything for at least two hours before the appointment at 9.00 am, so the big debate this morning was whether to get up and breakfast earlier than usual tomorrow, or have something to eat in hospital afterwards. 

Knowing how bad we are at getting up and what Steve is like when he's hungry, we compromised at setting the alarm for 6.45 am; enough time to eat a cereal bar with his morning coffee in bed, but postponing breakfast until later. 

Soon after sorting this out the phone rang and, as a result, we're now on to Plan B. The phone call was Steve's trial nurse, Martha, who wanted to know how Steve was feeling. It seems that the drug trial protocol does not require a CT scan to be carried out as a matter of course every three months. It's only necessary if a patient feels worse, or if an X-ray indicates that the disease has progressed.  As Steve is feeling OK (other than his tingling extremities which are a side effect of the chemo) she has cancelled tomorrow's hospital appointment. Steve will have now an X-ray before seeing the consultant at the chest clinic next week, and will only need a CT scan if the X-ray indicates any significant increase in Leo's size. So we could have gone away for a few days for Steve's birthday, after all - how frustrating! 

That said, we are both feeling just a little less anxious now, and a little more confident that Steve is holding his own in the battle. Of course, we won't know exactly what's going on until next week, but at least we can have a lie in tomorrow morning, if we feel inclined to do so!

The phone has been hot this morning for other reasons too. First it was the RHS media centre to ask if I am an amateur or a professional photographer. As I earn a living doing something completely different, I am classed as an "amateur" apparently. Hot on the the heels of that call was another from Amateur Photographer magazine, which is featuring the RHS Photography Competition result - it seems that my amateur status makes it more a more appealing story! I understand that the article will probably appear in the issue due to be published on 20 March, and may be on the website. Wish I could remember what I said now - oh dear, it will probably be very embarrassing...... 

Tuesday 2 March 2010

happy birthday Steve!

Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right
The Beatles 

Given the awful weather this winter, I imagine that in recent months very few people have woken up on their birthday morning to blue skies and bright sunshine.  Steve is one of the lucky ones - Happy Birthday, Steve!  Let's hope it's a good omen for the year ahead :-)

This time last year we were on a farm in Cornwall for the week and visited the Eden Project on Steve's birthday, in blissful ignorance of what lay ahead in the coming months. No galavanting about the country for a week this year due to the CT scan and X-ray appointment on Thursday. However, the birthday celebration will spread over a longer period to compensate.  

We started today with a meal out in the Ashmolean roof-level dining room, followed by celebratory fizz and chocolate birthday cake at home, with a walk in between to burn some calories and work up an appetite.

On Friday night we will be celebrating with daughter Katie and her partner George, back in Oxford for the weekend. On Saturday night, we'll be in Bristol where we will be continuing the celebration with a home-cooked birthday meal courtesy of our nephew Nick, his partner Kate with entertainment by their beautiful baby daughter, Esme.  Jack will be there stocking up on carbs to give him energy for his Half Marathon in Bath, the following morning.  Many thanks again to all those who have sponsored him to raise funds for Cancer Research UK.

And it goes on - there's a flying lesson to be arranged (thank you Jon and Sally!) and a session in a very fast car, off-road, to get the adrenalin pumping.  Steve's determined to carry on enjoying such experiences whether Leo likes it, or not.  

A note in a birthday card from a neighbour asked if this was a "big" birthday for Steve, then added that they are probably all big birthdays now.  So right Jean!  We're looking forward to Steve's millionth binary birthday in twelve months time, but will try to make the most of every day between then and now.....

.....which reminds me, having opened the blog with one Beatle's song, looking forward to this time next year it seems appropriate to close with another (and the answer to the question in the lyrics is YES, Steve!)

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?