Mesothelioma Awareness Day

Today, 26 September, is Mesothelioma Awareness Day in the USA.  The day was set aside by Congress as a time to raise the public's awareness of the dangers of asbestos exposure. The event was started by a group of Meso Foundation volunteers in 2004.  The level of public involvement and awareness has increased every subsequent year on this date. 


September 26th is a day to remember those who have fallen victim to Mesothelioma and the effects of asbestos exposure. It is a day to offer a revitalized hope for those who suffer with the disease today. And it is a day to focus on the means to find an answer A CURE for those who are stricken with the disease tomorrow.

heat wave

There's been a heat wave here.  Temperature rose to over 39 degrees C on Wednesday and stayed there until this morning.  It's now down to a more comfortable 38C.  


No - I'm not referring to the effect of global warming on Oxford's micro-climate.  Only me laid low with a bug this last week, which is now on it's way out now I hope.  Just another example that life goes on with its normal ups and downs, even while you are grappling with big issues like incurable cancer.  


Other things are not going to plan at the moment.  The visitors we were expecting this weekend can't make it after all, and my arrangements for walking the next stretch of the London Loop have been put on hold for reasons outside my walking partner's control. Will be thinking of you Sarah - good luck!  As a result, we have an unexpected "window of opportunity" to do whatever takes our fancy over the next week.  A great opportunity to make the most of the warm sunny weather the Met Office is forecasting.  I'm so glad I will have recovered from my personal heat wave before the weather hots up.  

Looking further forward, all being well, we will soon be meeting up with other members of the mesothelioma community in the UK.  Following the blogs of other meso warriors means we feel like old friends, even though we have only met once before in the flesh.  It will be good to see each other face-to-face!

the human MOT and another celebration

Back in July, Steve received a letter from our GP inviting him to come in for a free NHS health check to assess his risk of developing heart disease, stroke, kidney disease and diabetes. Apparently, it's a service offered to people between 40 and 74 years old once every five years - not that either of us have ever been invited to attend before, even though we've been in that age group for some time now! 


Initially, Steve did not feel inclined to accept the invitation given that he has an incurable cancer. However, I pointed out to him that as he is already beating the odds in terms of mesothelioma survival rates*, it would be a pity to be killed off instead by some other disease that could be treated if picked up early enough.  Persuaded by the logic of this argument, he finally attended the surgery this morning where he was weighed, measured, sample taken for chloresterol testing, blood pressure measured, and questions answered about diet, smoking and exercise.  The whole process took less than ten minutes.  We were able to do a bit of food shopping and be back home in time for coffee at 10. 30 am.  


If only the car service tomorrow is as quick and smooth!


Tonight we will be celebrating again - photography this time; I have just been awarded another FIAP (Federation de l'Art Photographique) gold medal for a picture of the Guggenhiem Gallery in Bilbao, taken on our visit there back in June :-)

* On the subject of mesothelioma survival rates, in December 20120 Cancer Research UK published updated key stats on the disease - the good news is that one year survival rates have increased by about 30% since the late 1980s.  For patients 2002-2006, the one year survival rate was 34% for men and 40% for women.  It's good to know that Steve - and many of the other meso warriors diagnosed during that period and since, and still going strong - are pushing those survival rates up much higher.  And long may it continue. 

putting things in perspective

Isn't it strange how your memory plays tricks on you?  


If you were to ask me now how it felt when Steve was having chemotherapy back in 2009, my immediate response would be to say tough.  However, when Steve mentioned last week that the "Goodwood Revival" event was taking place this weekend, his remark immediately brought back floods of happy memories of a wonderful visit to Chichester, staying with our friends Anne and Colin. We dressed up in 50s and 60s gear, enjoyed looking at other people's outfits from the 40s, 50s and 60s and watching cars and bikes from that era race round the circuit at the historic motor sport and aviation event at Goodwood, Sussex. Looking back at the blog post for 20 September 2009, I realize now that we managed to enjoy ourselves greatly even though Steve was half way through six cycles of chemo at that time.


Two years later, and we spent the equivalent September Saturday in London at the Open House event, visiting buildings not usually open to the public.  After a frustrating start at St Pancreas, where we arrived 30 minutes after opening only to find that the tours of the former Midland Grand Hotel (now called the Renaissance Hotel) were already full for the rest of the day, things began to look up.  


We head south of the river, enjoyed the gorillas lined up along the embankment, then took the lift to the roof terrace at the top of City Hall to enjoy the 360 degree panorama over London before winding our way gently down the amazing spiral ramp inside the building, snapping away happily like loads of other photographers!

After lunch at City Hall, we did the short walk to Carmarthen Place to look around two wooden eco houses and an artist's studio with a green roof (I'm hoping to inspire Steve to do something similar but on a very much smaller scale in our garden to replace the rotting shed and provide a studio and storage...) 

Revived by a pot of tea and a brownie at the Tea Pod in the nearby Fashion and Textile Museum, we carried on to Lambeth Bridge Road and the House of Antoni and Alison to see the renovation of a 1820's terraced townhouse and enjoy some of the fashion and design artwork of the couple who undertook the project. 

Image courtesy of Time Out

For once, we allowed enough time to get back to Paddington and the train home without having to rush.  Even so, after an exhausting long day out on Saturday it was good to relax on Sunday and top off the day enjoying a wonderful meal with our friends Jonathan and Sally to celebrate Steve still being very much alive and kicking two years and three months post-diagnosis.  The perfect finish to a very enjoyable weekend - thank you!


Which brings me back to the theme of today's blog - as I hunted for some paper this morning to write today's "to do" list, I came across a spiral bound note pad with scribbles going back to 2009, including a note I had written in October 2009 at a discussion with Dr Louise when we looked at Steve's scan at the start of chemotherapy cycle 5.  


There are simply two sentences.  The first says

"Uncertainty is better than certainty, as hope is not ruled out"

The second sentence reads

"Scan - very small areas around the outer edge (of the right lung) are thick in places, but 99% is clear - reassuring"

After the last two assessments, we had been concerned that some disease progression had taken place since diagnosis, but had been trying to see this a positive outcome given the very, very slow rate of growth and the subtle change in pleural thickening which is almost imperceptible. In a strange way, finding this scribbled note from two years ago - which I had completely forgotten about - helps puts things in perspective and reassures me that there is a good foundation for feeling positive.  

It can be difficult to live with uncertainty, but it allows us to hope - that a cure will be found; that chemo will shrink the tumour or slow down its rate of growth; that we will survive to achieve the next personal target; that there will be good days while treatment is in progress and a life to enjoy after chemo.  When the evil has escaped, hope is still there at the bottom of Pandora's box to help us keep going through the bad times, along with the love and support of family and friends. 

Breathtaking

If you or someone you love have been affected by mesothelioma, please take the time to watch the trailer for the documentary "Breathtaking." 







Kathleen Mullen investigates her father's death from Mesothelioma and Canada’s explicit role in domestically mining, and internationally exporting asbestos. 


The Asbestos Disease Awareness Organization (ADAO) will be offering a livestream screening of the movie on its website September 26th at 6:30. Follow the link on the right under "Find out more about mesothelioma" to access the ADAO website.


And watch.


Please.

27 months since diagnosis and life goes on

It's 16 September 2011, which means it's 27 months to the day that Steve was diagnosed with mesothelioma.  If you read yesterday's post about his latest hospital assessment, you will know that disease progression since then has been almost imperceptible and we are now looking forward to enjoying the autumn.


It struck me this morning about how our lives have changed since that fateful day in 2009, sometimes in very positive ways.  


There are little additions to our day-to-day routines.  I read daily Google alerts on anything and everything to do with mesothelioma and follow up links shared with the meso warriors on Facebook.  It's information like this that has given rise to one of Steve's daily rituals, supplementing his diet with extra vitamins, omega 3 rich fish oil, Agaricus Blazei -a medicinal mushroom- and tumeric, all reputed to help boost the immune system, as well as taking a non-steroidal anti-inflammatory  drug (NSAID) to treat arthritis, which research has shown can have the side effect of shrinking tumours.  We have no idea if any of this is contributing to his continued stability, but he's not going to stop to find out!

A few days after Steve was diagnosed, I stumbled upon Graham Sherlock-Brown's PETAL philosophy for living with mesothelioma: a Positive mental attitude; Eating well and exercise; setting Targets; Adapting to change and Living your life. In retrospect, we have incorporated much if not all of that philosophy into our own lives over the last two years, although we still need to do a bit more work on the exercise element, in addition to walking....

During the first six months of chemotherapy, we kept going with the support of family and friends, treating ourselves to days out, the very occasional weekend away, and lots of cream teas as we worked our way round the National Trust tea rooms within striking distance of home.  


Putting away the sick bucket for the last time was cause for great celebration!  As other side effects of chemo (tiredness and peripheral neuropathy i.e. numbness and tingling in fingers and toes) continued to wear off, we became more adventurous in where we went and what we did - making the most of life within a three-monthly time horizon.  


We became far more sociable than before, enjoying the company of family and friends wherever and whenever the opportunity arose.  We have made new virtual friends in the meso community - sharing information, giving and receiving support on Facebook, through e-mails and following the blogs of others on a similar journey.  

I've added a new blog today under "We are not alone". Tess Gully was diagnosed with mesothelioma in September 2010. Tess has got through her first year by setting herself a series of short and longer term targets to strive for - a key element in the PETAL philosophy.  Keep it up Tess!


Although I loved my work, it robbed me of precious time I could otherwise be sharing with Steve.  It was a natural choice to volunteer for "early release" when the opportunity presented itself. I have rarely looked back since, other than to keep in touch with friends from that part of my life.


Having more time together has allowed us to indulge a shared passion for art and photography - we've been to more exhibitions and taken more images these last six months than in the previous 3-4 years.  Pity we've had to turn down an invitation from the RHS to exhibit at next's year's Chelsea Flower Show - one of the downsides of being unable to make big commitments that far ahead in time.  


However, living very much in the here and now means that we can usually say yes when opportunities present themselves. A bit of spontaneity after a lifetime of planning a long way ahead is wonderful (although we still have to be organized to make the most of it!) 


Some weeks ago, a virtual friend who's husband died as a result of mesothelioma said in an e-mail "As you know, it's a real roller coaster, but it's obvious that you are really getting the most out of life and that is exactly what we should all do.  It sounds strange, but some of the happiest times Andy and I spent together was after the diagnosis"


It doesn't sound strange at all to me....We're looking forward to the next three months.  Oh yes, indeed!

deja vu

There are somethings you hope you never have to experience again, and others you would be happy to repeat again and again.  


At Steve's last assessment in June, we were told that his mesothelioma is growing, but so very, very slowly that the difference between X-rays taken at three monthly intervals is imperceptible - you have to compare the most recent picture with the earliest to spot the small amount of change that has taken place over the last two years.  Today's assessment felt like a bit like deja vu - the doctor was different but the news was the same - such a subtle change that the difference is only discernible when comparing X-rays separated by long period of time. Steve's chest sounds good; the pleura are intact; no fluid build up and no sign that the mesothelioma has spread to any other parts of his body.  


In short, no need for any treatment - come back in December for the next check up, unless there are any problems in between then and now.


Given that mesothelioma can be such an aggressive cancer and bearing in mind that Steve is not in pain, not breathless and is able to lead a "normal" life in terms of day-to-day activities, getting that same news has got to be a good deja vu experience. Even so, disease progression of any type is a reminder of how vulnerable he is - as if we need reminding - and such thoughts don't exactly lift the spirits. We were both a bit quiet as we left the hospital, digesting and analysizing the doctor's every word.  


When I asked Steve how he felt about the outcome of today's assessment, not surprisingly, he replied that what he really wanted was a silver bullet - something that would stop the mesothelioma dead in its tracks, take it away altogether.  But until a cure for mesothelioma is found, he knows that isn't going to happen.  Although it's killing him slowly, provided this very slow rate of growth continues, he still has a few years of good life to look forward to.  And who knows - may be the silver bullet will be found in the meantime.  


He also pointed out that at least he knew what was going on inside him and could live his life accordingly. So many people have no idea that their hearts are weakening, arteries furring up, or that a degenerative disease is slowing killing them until it's too late.  


Having this conversation took me back to memories of the Velcade drug trial, and our initial disappointment that the mesothelioma did not shrink in response to the chemotherapy treatment.  However, Dr Louise kept telling us that stable is GOOD, especially for someone in Steve's otherwise good condition. Over the two years since then, we have realized that she was right.


By the time we arrived home, we were feeling more positive and that feeling has grown as the day wore on. The half empty glass now looks half full.  The lethargy of the last few days is lifting.  We have started doing things and making plans.  The car is booked in for a service; Steve is booked in for his over 60s general health check; we've splashed out on a new tap for the kitchen and bottle of Prosecco to celebrate. We can firm up plans that have only been lightly pencilled in and look forward to a wonderful autumn.  If we haven't seen you over the summer, don't be surprised to hear from us soon!

the waiting game

It's the day before Steve's next hospital assessment.  By this time tomorrow, we will have a clearer idea of what (if anything) has been going on inside him, a better feel for how life will unfold over the next few months and will be able make some plans.  But today we're playing the waiting game, each in our own way.


Steve is keeping himself occupied with plumbing matters (of the kitchen/bathroom type!) researching new taps, replacement bits for the kitchen sink, a new seat for the lavatory......very practical, very here and now, very matter of fact.  "I'll see if they have them in stock" he says, "so we can pick them up on the way back from the hospital."


On the other hand, I feel like I am treading water. Can't settle down to do anything.  With the hospital visit hanging over us, I find it difficult to focus on things that need concentration or decision-making. Almost everything on the "to do" list seems somehow dependent on the outcome of tomorrow's assessment. I'm reluctant to start things that I can't finish today, for fear that tomorrow we might hear news that sets Steve back on the path of chemotherapy, with life revolving once again around frequent hospital visits. If that happens, I know that we will manage as we did before, but it doesn't make the waiting any easier.  


At times like this, it's always comforting to hear from others who know from experience what we are going through.  One such person is Jan, whose e-mail this morning reminded me that Steve is aware of his own body and can feel the signs of things changing, often before the doctors know what's going on.  As he still feels good, the chances are his condition is still stable.  I'm keeping that thought in my head as I try to make a decision about what to do with the rest of the day.


Perhaps now would be a good time to catch up on the ironing?  On the other hand, the sun is shining and there are big swathes of blue sky - better to be outdoors?  Oh dear, decisions, decisions........what was I saying about being unable to settle down and do things?

bonjour Septembre!

With Steve's next assessment fast approaching, what better way to distract our minds than take a short break in France. So that's where we greeted the arrival of September, landing at Montpellier airport, hiring a car and heading off to the Camargue for lunch in the walled city of Aigue-Mortes en route for Saintes Marie de la Mare, our base for the first two nights of the holiday.

Aigues-Mortes

Saintes Marie de la Mer

In the morning of day 2, we set out for the Camargue national park in search of white horses, black bulls and pink flamingoes (but ended up finding them much closer to home!) However, we enjoyed watching the egrets fishing in the shallow etangs.

After lunch, we treated ourselves to a boat trip along the coast and up the Petit Rhone, for a different view of the area and more white horses.

Day 3, we moved on along to coast, stopping at Sete and Beziers to take the air, stretch our legs and have a bite to eat

By early evening, we had arrived at Caracassonne, our base for that night and the night after.  This was the view from our B & B, underneath the city walls!

We spent the next day exploring the old city, the castle and the city walls

Day 5 we headed inland to visit the Millau viaduct before arriving at the Mas du Chene in the Cevennes, where we stayed for two nights with our dear friends and wonderful hosts, Richard and Alison.

The next morning saw us pottering around the market at St Jean du Gard and the afternoon visiting the Bambouserie - an amazing plantation of bamboo and other exotic plants

After a fond farewell to Richard and Alison, we headed back Montpellier for lunch and a visit to the Redon exhibition before going on to the coast at Palavas-des-Flots, where we walked on the beach and finished our wine and nibbles on the hotel balcony watching the sea as the sun went down.

We were back in the UK by lunchtime on Thursday, out for a meal with friends to bid au revoir to Ruth, before she went back to the far east.  Thank you Em and Nick for a lovely spread!


After a quick turnaround on Friday, we were off again on Saturday to a family do to celebrate a special 70th birthday with my cousin, her husband and their family and friends, then on to stay the night with our friends, Keith and Glynis who live nearby.  Our short break away from home finished yesterday, with a wander around the delightful market town of Woodbridge in Suffolk.  Although tempted to stay longer, the thought of driving back today in high winds was not appealing, so we headed home in the early evening.  Many thanks Keith and Glynis for being excellent hosts, as always.


So much for the distraction of traveling! We now have to face up to Steve's next assessment on Thursday, which will determine how life will unfold over the next three months. My mood is saddened by the loss of another meso warrior, Julie Bastion (Jules) who died in Australia while we were away and whose funeral was today, on the beach. However, our friend in Kent, Mavis, is feeling more positive after being offered the possibility of taking part in a new drug trial closer to home which is good news!  I can see there will be lots to talk about when many mesothelioma patients and their carers gather in London in a few weeks time.  


Last but not, happy birthday for tomorrow, Jack!




P S Oh dear, the formatting of today's post has gone a bit awry. No matter - life's too short to worry about such minor imperfections!