The 200th

This is the 200th post, so it’s me, Steve, dropping in to say hello.

I’m still here, not that I thought I wouldn’t be, still feeling absolutely fine, which will be a surprise for the surgeon who gave me the diagnosis, but less of one for my oncologist, a much more positive sort of guy. Who knows why? Perhaps the chemo, perhaps my crazy immune system, but for now, I still feel as good as ever, notwithstanding the slightly numb fingers and slightly more numb toes.

As you will be aware, I’m terrible at keeping in touch, but it was good to see so many friends at the significant birthday party this summer. It was also good to meet so many people: sufferers, carers, charity workers and health professionals at the Mesothelioma Day. I might not contact you as much as I should, but I think of you all a lot. Thanks for being there, and love to you all.

Finally, today would have been Dad’s 86th birthday. He died from mesothelioma in 1992: I hope you will all raise a glass of your favourite tipple in his memory.

Bye, and see you for the 300th post!

Jabs

Because he was undergoing chemotherapy this time last year, Steve was unable to have seasonal/swine flu jabs in the autumn.  As a result, and given his compromised immune system, we had to spend several months being ultra careful to avoid contact with people known to have infections.


It’s all different this year, thank goodness. As mesothelioma is a health condition associated with a higher risk of medical complications from influenza, Steve comes into one of the priority groups for the seasonal flu jab. As his carer (well, more of a minder at present!) I fall into the same group. So that’s where we’ve been this morning. Having jabs. More of a scratch, actually.  All highly efficient.  In and out very quickly.  So unlike our experience on this date last year, when it took three nurses several attempts to find a vein in Steve’s arm for chemo, and we spent the best part of the day at the hospital……


Although duly jabbed, we won’t go courting danger if there’s a flu epidemic.  However, at least we feel we’ve done something to reduce the risk of getting a nasty infection that might harm Steve’s lung function.  


Whilst at the surgery, I remembered to ask for my NHS number - my old health card has letters and numbers, which have long since replaced by all number IDs.  Armed with this information, I’ve been able to apply for a European Health Passport, which should be with us in time for our next trip abroad - something else to look forward to!


If my maths are correct, the next blog will be the 200th! Steve’s turn to make a guest appearance on doing something positive, if I can persuade him……

We are not alone......

At the top right of the blog, under the title We are not alone, there is a list of links to other meso people’s blogs. Today, I added another link to Anita’s blog. Anita lives in Melbourne, Australia. Now in her late forties, she was diagnosed with mesothelioma in 2007. Her case against James Hardie was settled out of court, on the day it was due to be tried. Anita started her blog back then to let family and friends keep up-to-date with her progress - and its been one amazing journey….Following surgery, she went into remission, fell pregnant and now has a beautiful baby daughter, Emma.


Today Anita received biopsy results which confirmed her suspicions - the mesothelioma has returned.  However, although she has several tumours, they are all small and confined to her right chest area. Even so, she is looking on the bright side, enjoying the spring sunshine down under and the warmth of the sun on her skin.  After reading her blog today, I was so impressed by her positive attitude and determination to fight the disease that I have copied a paragraph below to share with you. Quite an inspiration!  

…..There are new clinical trials for Mesothelioma starting up all the time and sooner or later a cure will be found. All I have to do is to hang in there. Simple really.

For anyone in this predicament it is important to keep things in perspective and stay focussed on the positive. Medical science is moving exponentially toward cures for all cancers. The future really is looking bright we just have to stay focussed, do our best to keep our immune systems strong and try to remain positive. As I’ve said before, while there is life there is hope.

reunion, celebration, exhibition

In recent times, I’ve enjoyed a girl’s weekend get together around this time of year; Prue, Chris, Jenny and I go somewhere like Bath, Glasgow or St Ives for a bit of culture, exploring, lots of talking, eating and drinking and the occasional bout of retail therapy.  


However, this time last year Steve was in his 5th cycle of chemotherapy, so leaving him for a weekend wasn’t an option as far as I was concerned.  Rather than abandon our get together, my wonderful friends came here to Oxford, bunked up (literally!) in the YHA down the road from us and made Steve an honourable girl for the weekend, so that he could join us for meals and walks, between naps and taking the anti-nausea tablets.


We’ve had to modify our plans again this year, for health reasons - this time it’s Jenny’s husband who’s being treated. As a result, this year’s get together has been postponed until the spring, when it looks like we will be heading north to Edinburgh, within striking distance of Jenny’s home. However, three of us did meet up in Oxford again last week, at the Historic Towns Forum Annual Dinner - which was also a celebration to mark Chris’s retirement as the HTF’s Director.


Steve was delighted to have the opportunity to take part in this momentous occasion, and honoured to find himself sitting next to Chris at the “top” table, as were Prue and I. We raised a glass to absent friends, and your were foremost in our thoughts Jenny. Hardly a dry eye in the house by the end of the evening, but tears of laughter and joy as Chris unwrapped her surprise thank you presents!  


After seeing Prue off to the station the next morning, Steve helped me print the last of my pictures for the Art in Woodstock exhibition, ready for hanging on Friday and the opening of the event on Saturday. If you are anywhere near here this week, I hope you can find time to drop into The Place Cafe Bar, 59 Oxford Street, Woodstock.  Make your way through to the back and enjoy looking at the pictures over a cup of tea or coffee. The exhibition closes at 5 p.m. Sunday 31 October.  


Which means that Hallowe'en is fast approaching, likewise the birthday of Steve’s dad.  He died of mesothelioma in 1992 as a result of exposure to asbestos when working in the Bristol shipyards in the run up World War II, years before Steve was born.  The horrible co-incidence of father and son contracting the same disease but from completely different sources has not escaped us. I’m pleased to say that treatment, attitudes and survival rates have improved immensely since then.  But there is still a long way to go, as we know…..


Last but not least, happy birthday for yesterday Sarah! 

Trigger litigation

On 16 October, I mentioned the Court of Appeal judgement that has set the cat amongst the pigeons in terms of mesothelioma damages claims.  An article written by Sarah Hunt of Shoomiths, a national UK law firm, summaries the position clearly and succinctly, so I have reproduced it below.  


One step forward, two steps back as they say.  Let’s hope the Supreme Court can sort this out quickly and rationally……..

Mesothelioma victims face delay and uncertainty following ‘trigger litigation’

Following the Court of Appeal’s long-awaited decision on interpretation of insurance policies in mesothelioma claims - known as the 'trigger litigation’ - the judgment has only increased asbestos victims’ uncertainty.

A person may be exposed to asbestos negligently as long as 50 years before they actually develop mesothelioma, an asbestos related cancer. 

Three insurance companies asked the courts to consider the wording of their policies to determine when they would have to pay out – either when the exposure to the asbestos occurred or when someone develops symptoms.

In 2008, the High Court determined that it was the insurers providing cover when the asbestos was inhaled that would have to pay.

The decision meant greater access to justice for victims of asbestos, because if the court had found that the trigger was when symptoms developed, people would be prevented from bringing a claim if the insurance company was no longer in existence and therefore unable to pay out.

Of course, insurers providing companies with cover against asbestos exposure – and who were 'on cover’ at the time the symptoms developed - were for years receiving insurance premiums, but have now avoided having to pay out on claims.

However, the Court of Appeal examined individual insurance policies, finding that in some cases it would be the insurers who were on cover at the time of the exposure that would pay out; while in others, it was the insurers who were on cover when the symptoms started.

The decision was further complicated by the three Court of Appeal judges taking three different approaches in reaching their decision.

This has created uncertainty for both insurers, who don’t have clear guidance from the court about how the wording of their policies will be interpreted; and for people diagnosed with mesothelioma who are left uncertain whether they will be able to claim for the debilitating and ultimately fatal illness they’re suffering from.

The insurers involved have been given permission to appeal the decision, which means there will be no certainty until the Supreme Court rules.

Many mesothelioma victims are unlikely to survive to hear the outcome of the appeal.

New regime

For some time now, Steve has been taking supplements to help boost his immune system - vitamins and omega 3 (fish oil).  He has has also been taking a medicinal mushroom extract Agaricus Blazei. This contains a substance called beta glucans, known to stimulate the natural killer cells which are an important part of the body’s immune system. Whether some or all of these have played an active role in keeping Leo at bay, or whether that’s due to last year’s chemo (even though it did not produce a noticeable response in terms of tumour size reduction) we honestly don’t know. But something seems to be helping him stay stable, so he continues taking the tablets!


Yesterday he added another weapon to the defense arsenal - celecoxib. This is non-steroidal anti-inflammatory drug (NSAID) which is used to treat arthritis, amongst other things. It’s a selective COX-2 inhibitor which (in plain English) reduces inflammation and pain, without the known gastrointestinal side effects of non-selective NSAIDs. So it will help him with the problems caused by arthritis more effectively than the ibuprofen he has been using recently. 


However, there is another potential bonus of taking celecoxib.  As noted on the US National Cancer Centre’s website states “COX-2 inhibition may result in apoptosis (cell death) and a reduction in tumour angiogenesis and metastasis (growth and spread). So it just possible that whilst helping Steve with his arthritis pain, the drug may play an active role in keeping Leo under control or helping him loose weight. The fact that Andrew Lawson (the doctor with mesothelioma - link top right) also takes celecoxib for pain relief is also reassuring…..


It may be psychological, but Steve says he felt able to move his neck more freely last night - and it certainly looked like that from where I was sitting. Let’s hope that soon he’ll be able to look straight up without having to lean backwards if he wants to see something up high! We’ll have to wait until early December to see if this new regime has any noticeable effect on mesothelioma after taking it for six weeks or so. But you never know………

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

Paris

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 http://www.thejamfactoryoxford.com/artcentre.html

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!

Gardening

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 negligence…it 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 end….you can still enjoy life, as we do - even though cramming it all in can be exhausting….Richard and Mary, stay positive!