Mesothelioma Action Day

Today is Mesothelioma Action Day.  The event started in 2006 and has been celebrated every year since then.  Throughout the UK events are organised by asbestos victims support groups to raise awareness, remember loved ones lost to the disease and publicise the Action Mesothelioma Charter.  

Action Mesothelioma Charter

Mesothelioma patients and their families have a right to:

• a speedy and accurate diagnosis, supported by a Multi Disciplinary Team discussion;
• good quality information from a variety of sources available in different media and languages;
• support of a suitably qualified nurse and other Multi Disciplinary Team members throughout their illness;
• be considered for the best possible treatments available with the support and input of a Multi Disciplinary Team;
• have up-to-date advice on benefits and help in applying for them, and receive prompt payment of benefits;
• have legal advice and guidance from a firm of solicitors experienced in mesothelioma claims;
• guidance on end of life decisions and care at home;
• provision of a consistent nationwide service from coroners using a clear and open process with a maximum case length of three months.

We call upon the Government to:

• have mesothelioma made a national priority by the Cancer Tsar;
• fund good quality research, alongside other national bodies, on mesothelioma with a view to improving diagnosis, treatment and outcomes for patients;
• support the production of clinical Guidelines on the best practice of diagnosis and management of mesothelioma;
• ensure the Health and Safety Executive vigorously enforce existing regulations on asbestos

And call upon all employers to:

• prevent future exposure to asbestos by providing a safe working environment with all necessary equipment to protect employees;
• work with unions and individuals to ensure enforcement of current regulations to safeguard all employees;
• identify all asbestos in their properties and organise its safe removal where practical or necessary when work is being carried out.

Mesothelioma is a malignant lung disease which results mainly from exposure to asbestos.  Someone dies every five hours from mesothelioma in the UK.  Not just statistics - real people, husbands, wives, sons, daughters, grandmothers and grandfathers, uncles and aunties, friends and lovers....

Back to life, back to reality....

So...after a short escape to Holland, it was back to real life and reality.  It's taken a while to catch up after our visit to Amsterdam, even though it was only a short trip.  

After just one day back at home, I was off again - this time on a work-related trip to Guernsey for a few days, then working hard at home for the rest of the week.  

We spent the last day of June in Bristol, visiting Steve's mum on her 88th birthday - the care home gave her a great chocolate cake with candles, which was shared with all the other residents once we had been served!

We've also been catching up with our cyber family the mesothelioma warriors on Facebook in general and the other meso bloggers in particular.  Sadly, for the most part, the news has not been good.  

More warriors have fought and lost their last battle - our hearts go out to their families and friends left behind.  

Fellow blogger Lou is having a tough time on chemo in Australia; Tess in Kent is still feeling poorly after her last chemo treatment, so probably a wise, if difficult, decision not to have any more; Amanda and Ray only recently back from a holiday Italy were dealt a blow when they found out that Ray's mesothelioma is back on the march again, so they, like us, are looking at options but not letting it stop them enjoy life in the meantime.  Jim has been through hell with his chemo, but was determined to get through the full course of treatment as it's knocking back the disease and gives him more treatment options.   

Mavis in Kent has just taken her second dose of an immunotherapy trial drug at the Royal Marsden.  It's having some side effects including affecting her sleeping pattern, but she is managing well; listens to her body, eats well and takes it easy when she has to.  

Sending much love to you all x

Now July has arrived, that means its just under 7 weeks to Steve's next assessment, which will be at the clinical trials unit clinic.  We'll hear then if there are any trials recruiting which might be suitable for him and get some idea of how quickly his cancer is growing.  If the difference in size is obvious on the X-ray, then we know there is a problem.  

In the meantime, Steve is still feeling fine and not getting too puffed unless he's doing something strenuous, like carrying 20 kilo bags of "postcrete" from the car, through the house and into the back garden, where we are hoping to make some progress on replacing fences tomorrow, with help from a friend, John.  

Now that England is out of the world cup, I think we will be rooting for Holland!  Oh dear...Just seen that Murray has been knocked out of Wimbledon....Life is unpredictable, isn't it? 

Amsterdam

Firstly, many thanks to all of you who sent good wishes and joined in the celebration of Steve's 5 year survivor anniversary!

As our Facebook friends know already, we marked this special occasion with a trip to Amsterdam - somewhere we had been planning to visit for years but never quite got round to it. However, it was the perfect choice for this occasion - our first adventure since Steve recovered from the side effects of the VanSel Phase 1 drug trail he took part in during the early part of the year.  A short flight, plenty to see and do indoors if the weather was poor, and a good base we could return to to recover, if it all got too much....

We planned to split our main time three ways - visits to some of Amsterdam's modern buildings around the docks and River Ij, including EYE, Holland's national film institute;

EYE

Muziekgebrouw Concert Hall (centre for contemporary and classical music); 

Muziekgebrouw

the wonderful public library and the Conservatoire school of the arts next door; 

Public Library

The Conservatoire

Arcam architecture centre and Nemo, a science museum whose amazing stepped roof terrace had water features, deck chairs, games and a cafe where you could rest the feet, quench your thirst and enjoy wonderful views over the city from a high vantage point.

Arcam

Nemo

We also spent time just wandering around the historic core of the city, from canal to canal, admiring the terraced streets of distinctive, tall narrow houses and the floating flower market, amongst other things.

There was some culture too - a visit to the Van Gogh Museum and to the Stedelijk Gallery, home of Amsterdam's modern art collection.  

Van Gogh Museum

Stedelijk Musuem

Plus a quick look inside the atrium of newly opened Rijksmuseum, although not enough time to view the collection on this occasion.

Rijksmuseum

However, it was some of the unplanned events that we enjoyed just as much - seeing the Dutch getting behind the national team in the FIFA World Cup - the city turned orange on match day - balloons, streamers, bunting - plus people wearing T-shirts, hats, suits and onesies in orange...

....wandering through the leafy Vondelpark on our way to the Museum quarter...

....watching the surge of cyclists (living in Oxford, we are used to cycles...but nothing like in Amsterdam, where cyclists rule the roads and cycleways alongside the footpaths!) 

...and spending our last evening in the company of two photographers - Ricky, an accomplished street photographer based in Amsterdam and Jan, who is famous for his wonderful architectural images...Jan and his girlfriend traveled from the Hague just to join us for the evening.  We were honoured!  Thank you for making it a last night in Amsterdam to remember.  

Jan, Ricky, Linda and Steve

Add to that mix of happy times being based in a lovely flat in a traditional Amsterdam house, close to the museums but in a relaxed and quiet area (except for when the Netherlands won its world cup match!)

I do hope we will return one day...must try the pickled herring next time!

A short break but a very enjoyable one. Now we feel ready to tackle something a bit longer before Steve's next appointment in August....But in the meantime, it's back to life, back to reality....

Five year survivor!

On 16 June 2009, Steve was given the news that he had mesothelioma.  He didn't ask for a prognosis, but was told anyway.  The doctor didn't know how much longer he might live...possibly only months....

In April 2010, a report written by London-based specialist stated "On the evidence presently available, I estimate his life expectancy at 2 years, but with a significant chance that he may survive more than three years and a significant chance that he may die within one year."

According to Cancer Research UK:

Generally, of all the people diagnosed with mesothelioma, about 4 out of 10 (40%) will be alive 1 year later.  About 2 out of 10 people (20%) will be alive 2 years later. Only about 1 in 10 (10%) will be alive 3 years later and about 8 out of 100 (8%) will be alive 5 years later. For people who have been diagnosed and treated in the earlier stages of the disease, there is very little information to draw on but some reports quote survival rates of up to 1 in 2 (50%) after 2 years.  So the range of survival times is very wide. It is important to remember that survival depends on other factors as well as stage.

So much for statistics...the median isn't the message...

....Today, five years after being giving his diagnosis, Steve is still going strong!

Tonight I hope you will raise a glass with us to celebrate this momentous occasion.  

Tomorrow we will seize the day and take off off on our next adventure!  

A bit of a roller coaster week

For us, it's been a good news week.

We were delighted to hear that our friend, fellow meso warrior Mavis, will be taking part in a Phase 1 trial at the Royal Marsden Hospital, starting next Monday.  Good luck, Mavis!

We were proud to see both Mavis and Steve featured in Mesothelioma UK's summer newsletter, talking about clinical trials.  Hopefully their experience will encourage others to take part in one, if offered the opportunity.

We were relieved to be able to rescue next door's cat from the roof of our house, where he had spent the night too frightened to get down the way he had climbed up. Thank goodness for roof lights - no need to climb out, just open the window and grab.  I think that Snuggles (the cat) was relieved too, not to mention our neighbours....

We were pleased to hear that the charity we helped out last Sunday by taking photos of their sponsored 5k run liked the pictures very much, and may use some of them to promote the work of the charity as well as raise more funds by selling photos to the individual runners.  A good morning's "work".

Another cause for celebration is a commission to photograph some public art in Bicester, a town to the north of Oxford.  It's been on the cards since last August, but a long last the contract came through, has been signed and sent off, so that's something to look forward to doing over the summer.

Plus, the weather has been wonderful - warm and sunny - and it's been great to be out and about without a jacket, enjoy a glass of Pimms, eat salads and BBQs...And our travel plans have come together nicely.  More of that in a future blog....  

Before then, we have a very special event to celebrate on Monday, 16 June.  No prizes for guessing what we will be marking with a glass of fizz.  If you really can't guess, then you will have to wait until the next post!

However, while nice things have been happening to us, the news from friends and neighbours has not been so good.  Lou is Australia is having a tough time with the side effects of chemo, finding it harder to stay positive, but giving it her best shot. Sending you a big hug Lou x.

Fellow UK meso warrior Tess has decided to discontinue chemo; her body can't take any more poison. Understandably, she has been feeling sad and depressed by this turn of events, but we are hoping she will feel better as the side effects of treatment wear off.  Much love to you, Tess x

After a wonderful holiday in Italy, Amanda and Ray returned to find a poorly cat and Ray developed a pain near his ribs - always a worrying symptom for anyone with mesothelioma. However, both cat and meso warrior seem to be on the mend now, so here's hoping that improvement continues!

The last piece of sad news is nothing to do with mesothelioma.  We heard this morning that one of our close neighbours (younger than us) had died unexpectedly. He had been to the doctor about a pain in his back, was diagnosed with cancer in his spine about a fortnight ago and died earlier this week. 

He had grown up in our street and was a familiar figure out and about on early morning walks, which he had been doing regularly after recovering from a heart attack some years back.  So sad to think he conquered one major illness, only to succumb to another...

I thought I was being a bit of a hypochondriac when worrying about whether the pain in my lower back might be caused by cancer.  Now I'm relieved I've been checked out and know that it isn't a spinal tumour.  I'm still waiting for an appointment with the specialist team to see what can be done....  

However, in the meantime, we are determined to make the most of this period in between the side effects of the Vansel1 clinical trial wearing off and the start of whatever clinical trial Steve takes part in next.  

Seize the day, as they say....So that's what we will being doing, very shortly!

One week + one year

One week....

As any meso warrior will tell you, life is fundamentally different after diagnosis.  However, there are rare time when it's as close to "normal" as it can get...We have just had one of those weeks...

A working week for me, spending most of the time in Guernsey, or traveling to/from the Channel Islands. While I was away, Steve has been holding the fort at home, representing both of us at the Annual Meeting of Osney Lock Hydro, a community-funded renewable energy scheme that we support, and keeping in touch with the care home in Bristol, where his mum is now resident.  

There was good news on the photography front while I was away.  Within a 24 hour period, two images were published on 1X (a curated online gallery) and a third selected as "Curator's Choice" which is quite an honour, plus Steve took a phone call from someone who had seen my work on the 1X website and wanted to discuss a project.  

There was also a phone call from the musculo-skeletal team at the local Orthopaedic Centre to say I've been accepted as a referral and can expect an appointment within the next month or so.  Looking forward to getting my back sorted!

We were out yesterday morning helping to photograph a 5 km fun run to raise money for charity, and both enjoyed ourselves enormously in the process!  And the good news is that Steve didn't react badly to the sunlight, even though we were outdoors for a couple of hours in bright sunshine!

 

One year.....

Today marks not only the start of a new week, but also the first anniversary of the death of Debbie Brewer, one of the most inspiring meso warriors we have ever had the pleasure and honour to meet.  The mesothelioma community will be thinking of Debbie and her family today, more than ever.  

Sending a big hug to Kieran, Debbie's youngest son and to Siobhan and Rich, her older "children".  

At Kieran's request, we will raise a glass in Debbie's memory this evening, along with many others who knew her and miss her xx

Back in the system and getting back on track

Steve is back in the "normal" clinic system.  However, we didn't get to see Dr T or one of the usual registrars when he went for his assessment last Thursday.  To our surprise and delight, it was Dr Ioannis - one of the two doctors from the Early Phase Clinical Trials Team he had seen regularly whilst taking part in the Vansel Phase 1 trial earlier this year.

It was an opportunity to update the doctor on the few lingering side effects of treatment - a continuing sensitivity to sunlight; strands of hair still falling out, and energy levels almost, but not quite, back to normal.  In other respects, Steve is feeling good.

Steve told the doctor that he would like to take some time out from treatment to enjoy life after being virtually housebound for several months whilst on the drug trial.  After that rest, he would be up again for taking part in any suitable clinical trials that are recruiting.  Although there are Phase 1 trials open at the moment, Oxford doesn't have any slots available, so Steve's wish to take a break is well timed in that respect.

The next assessment will be in August in the Clinical Trials Clinic.  If Steve has any problems in the meantime, he must get in touch with the hospital and they will see him straight away.  Likewise, if a promising new trial opens which they think might work for him, they will contact us.

With that sorted out, we had the green light to finalise our next adventures. Travel arrangements are in place; accommodation booked; good progress made on researching destinations and what to do when we get there; initial contact made with friends we hope to meet up with on our travels.  

I have work commitments for the next couple of weeks, but we will be taking off very shortly after celebrating five years since Steve's diagnosis, now approaching fast!

Our fellow meso warriors are also going through important phases of their journeys.  

Mavis is due to start a Phase 1 trial at the Royal Marsden Hospital shortly, so we will be keeping a close eye on her progress and wishing her the very best of luck.  

Tess has decided that she has had enough chemo.  She knows her body can't take any more.  However, she is exploring other options and how to make the most of palliative care.  I know she will find ways to improve her life, once she can enjoy it again as the side effects of chemo wear off.

Lou is back on chemo after her trip to the States and it's been tough - but she is a strong, determined woman and with fresh blood inside her. We hope she will soon be feeling the benefits as winter arrives in Australia.  

Amanda and Ray have been on what sounds like an idyllic vista to Italy.  Here's hoping the sunshine will follow them back to the UK, so they can enjoy drinks on their new garden terrace.  

It looks like the grand plans for our garden won't be materialising any time soon, but at least there is some space to sit outside now and enjoy the fresh air!

And on that note, I will finish today's post as work beckons. Here's to a flaming month of June!