Friday 25 May 2012

past, present and future

It's been one of those significant weeks......and not just because of the glorious sunshine and warmth in this part of the UK!

On this week in 2008, we were exhibiting our botanical images at the RHS Chelsea Flower Show in London, supported by a willing band of volunteers who gave their time for free in return for the exhibitor's "Chelsea experience" and a print of their choice.  It was hard work - up and at the showground at 7 am to carry out a security check of the stand; working hard with barely a break until after 8 pm, when we shut up shop, stumbled back to the tiny studio apartment we had rented for the week, picking up a ready meal at Waitrose in Kings Road on the way back; a bite to eat, a glass of wine then falling into bed ready for an early start the next day.  But it was a great experience and we wouldn't have missed it for anything!

On this week in 2009, Steve paid a return visit to the GP as he still felt unwell a fortnight after our return from an anniversary trip to Florence.  The doctor sent him to hospital for an X-ray and he was immediately passed on to consultant who told him he had fluid on his right lung. Arrangements were put in place for a pleurodesis op to drain the fluid and stick the pleura back together with talc. Little did we know then that the biopsy taken at the time would reveal mesothelioma.  In fact, we were all set to continue our grown up gap year travels to Turkey, in blissful ignorance of the news we would hear just a few weeks later.

On this week in 2010, we had resumed our travels some five months after Steve had completed six cycles of chemotherapy.  The side effects of the chemo had largely worn off (other than the numbness in his toes, which is still noticeable even now). We were spending a week visiting the Lake District for the first time, totally absorbed in the wonderful mountain scenery, visits to the coast and trying hard not to think about his next assessment in June.

On this week in 2011, we were still stunned by the unexpected death of our friend Andrew.  I think that event brought home to us even more how precious life is, how vulnerable we all are and how important it is to make the most of the time we have.  We spent the week with friends, enjoying a welcome back to the UK party for one couple, a 100th party (2 x 40th birthdays + 20 years as a couple) hosted by other friends; a trip to see the Merchant of Venice at the RSC, Stratford with our son, and walking another stretch of the London Loop long distance footpath with Sarah, another friend.

So what have we been up to this week in 2012?  Out and about whenever possible!  A day out at Lacock Abbey, where Fox-Talbot invented one of the early methods of photography, plus a walk around the village and a lunch at the National Trust (NT) tea room.  A trip to Greys Court, another NT property, with wonderful gardens and a maze, as well as (you guessed it) another NT tea room.....

Yesterday we were out again for lunch, this time in another wonderful garden belonging to our friends Richard and Mary, who know from personal experience how it feels to ride the emotional roller coaster of a cancer diagnosis and the debilitating side effects of chemotherapy.  But we were all feeling well and looking healthy, and I doubt whether anyone catching a glimpse of this happy group sharing a wonderful meal al fresco would ever guess what two of the party had been through and the effect it had on their loved ones.  Somehow we have managed to put that behind us to focus on the here and now.

So much for the past, and making the most of the present. As for the future, I'm not going to try second guess where we will be this time next year. That's far too far ahead in time.  We still tend to limit our future horizons to Steve's three monthly hospital assessments, and resist the temptation to look far beyond that date, other than in the most general terms.  

The next assessment is beginning to loom large in my mind at least.  Somehow, Steve manages to stay calm (or at least appears to).  However, with another work trip to Guernsey, a house-warming in Bury St Edmunds, a get-together with my cousin, tickets for a Royal Photographic Society event in Bath, a visit to family in Bristol and maybe a hot air balloon ride to fit in before then - not to mention any Jubilee celebrations we happen to find ourselves in the midst of - I'm hoping we will be too busy enjoying the here and now to get stressed about the future.  

Wherever you are and whatever you are dong, have fun and enjoy the summer while it lasts!

Monday 21 May 2012

Home and away

I think it's fair to say that we haven't had a truly "normal" week since Steve was diagnosed with mesothelioma in June 2009.  However, there have been a few occasions when our week has been planned ahead, we know pretty much what to expect and do not anticipate acting on the spur of the moment or being taken by surprise.  Last week started out as one such occasion.

The Nomads Artweek exhibition was hung and in progress. Steve was at home, working on his images of Marrakech, dealing with some business matters and transferring data on the computer.  I was away in Guernsey for part of the week, then working at home for the rest of the time preparing for tribunals at the end of the month.  Just a "normal" working week....

However, although forewarned, it had slipped my mind that Steve's story was going to be posted on the Asbestos Disease Awareness Organisation (ADAO) website, so it came as a bit of a surprise to see it shared last Monday. But the best news was hearing from Linda Reinstein of the ADAO that since posting the story, the organisation had received many positive messages and that by sharing the story, we had helped many people.  Isn't that wonderful?   

On the photography front, news of the Nomads exhibition on the RPS forum had resulted an invitation to give a talk to a local photography club, which is very flattering. My images which recently gained a "Distinction" from the Photographic Alliance of Great Britain (DPAGB) are going to be used as an example of the standard which candidates are expected to achieve and featured in PAGB news.  In addition, we have been approached by the organisers of a national photographic competition who want to use some of our images to promote the competition, and I have been invited to be a judge.  Whatever next!

What started out as an ordinary week ended up being rather extraordinary for reasons we hadn't anticipated.  Enough to take our minds of the hay fever which we have both been suffering from recently, particularly Steve - the tree pollen has been irritating his eyes and making him wheeze. But antihistamine tablets are effective, which is a relief....any unexplained coughing or wheezing is always a cause for concern with mesothelioma.   

This last week has also seen the start of a new group on Facebook "Mesothelioma Survivors and Caregivers" which has introduced us to even more meso warriors with inspirational stories - a haven for those who continue to believe that a cure will be found, one day.  Admission to the group is by invitation only, to protect the integrity and privacy of its members.  If you think being part of this group would help you as a meso survivor or carer, please contact me on Facebook with you details.  

It is now just over three weeks until Steve's next hospital assessment, so we will be keeping ourselves busy trying hard not to get too stressed about what might or might not have been happening inside him since last time.  I'm hoping that the weather will improve so that we can enjoy some warm sunshine and get out and about without jackets and an umbrella!

Lat but not least, a big hug to Debbie in Plymouth who is suffering from the side effects of chemo - you will be back to your "old self" soon enough Debbie, in the meantime, try to relax and take it easy for a bit....  

Monday 14 May 2012

“Doing Something Positive” – Steve’s Story « ADAO – Asbestos Disease Awareness Organization

“Doing Something Positive” – Steve’s Story « ADAO – Asbestos Disease Awareness Organization

Name: Steve
Date of Birth: 2-MAR
Country: Oxford, UK
Date of 1st Symptoms: APR-2009
Date of Diagnosis: 16-JUN-2009
Diagnosis: Mesothelioma
Treatment: Pleurodesis, radiation to “ports”, chemotherapy (Velcade drug trial plus Cisplatin)
How has Asbestos changed your life? (unedited):
Long before Steve was born, his father was exposed to asbestos dust when he worked in the Bristol shipyards.  Steve’s dad was diagnosed with mesothelioma soon after retiring and died about a year later.  As a result, unlike many mesothelioma victims, we were familiar with disease and under no illusion about what the future held when history repeated itself in June 2009, as Steve was told he had the same disease that killed his father.
I still vividly recall how it felt to hear that devastating news and the overwhelming roller coaster of emotions that followed – disbelief, anger, fear, numbness, helplessness, hopelessness and grief as we looked into the future and saw nothing but a black hole.  Although we had decided to be open about Steve’s condition, I found it very difficult to talk about it, with tears welling up in my eyes and a lump in my throat.  I poured out my emotions in an e-mail to a friend and it was like opening a release valve.  I felt so much better afterwards.  It was her idea to write a blog and I’ve been doing it ever since to keep family and friends informed of Steve’s progress, raise awareness and share our experiences in the hope that it will help others going through the same thing.
I won’t pretend that those initial negative feelings have ever really gone away – there are still there, lurking below the surface and they occasionally bubble up when we go through a bad patch, or an innocent incident becomes a trigger for the emotions to erupt. However, looking back at the blog, it was suprising how quickly our attitude and outlook changed to something more positive.
Scouring the internet for information, we soon discovered Graham Sherlock Brown’s PETAL philosophy for living with mesothelioma, which I would recommend to anyone!  Through a press cutting sent by a friend, we made contact with Debbie Brewer, a fellow mesothelioma sufferer in Plymouth UK, and were buoyed along by her zest for life.  Debbie introduced us to the Meso Warriors on Facebook, who have been a huge support and a mine of information.  Through this network we began to appreciate the scale and global impact of asbestos on the lives of innocent people, their families and friends.
Once diagnosed, Steve’s medical team acted swiftly.  Within a week, a treatment plan was in place.  Two weeks later he started a course of radiotherapy to zap the “ports” where the chest drains had been inserted during his pleurodesis operation, so as to minimize the risk of the cancer seeding in these vulnerable areas.  He was offered and accepted a place on a drug trial (a combination of cisplatin and Velcade, a biological therapy which inhibits cancer growth) and began the first of six cycles of treatment just three weeks after diagnosis.
It was a grueling three weekly schedule – hospital twice a week for two weeks, followed by a rest in week 3 which included returning to hospital for a scan every other cycle.  In spite of the side effects of chemotherapy – fatigue, nausea, occasional vomiting, increasing peripheral neuropathy (numbness in fingers and toes) – we got out and about at every opportunity, making the most of good weather, enjoying the small pleasures of life and catching up with family and friends as often as possible, with Steve pacing himself and resting whenever necessary.  We began to understand that it’s possible to live with mesothelioma, rather than die because of it.
We had been hoping that Steve’s mesothelioma would shrink as a result of the treatment, so I admit we were disappointed when there was no change at the end of six cycles of treatment.  He was booked in for an assessment every three months thereafter to monitoring his condition.  And three months later, there was still no change.  And no change three months after that, and again no change three months later….and so it went on.  We realized that stable is GOOD.
As I write, Steve’s next assessment is in mid-June 2012, almost three years to the day since he was first diagnosed.  As always, we will be hoping for good news, but mentally preparing ourselves in case it’s not.  This is how we live our lives now – we rarely commit ourselves to anything important beyond the date of Steve’s next assessment.  However, once the assessment hurdle is passed, there’s no holding us back.
In the last three years or so, we have traveled widely in the UK and Europe finally seeing those places we had planned to visit “one day”.
After years of promising to be more sociable but not quite making it, we have enjoyed visiting friends, having people visit us and organizing social gatherings. In the “old days” we might have hesitated about doing something new.  These days, if offered the opportunity, the answer is usually yes, provided we can fit it in before Steve’s next assessment.  Hot-air ballooning; Steve at the controls, looping the loop in a Chipmunk airplane; dancing over the waves on a high speed boat; trying our hands at clay pigeon shooting; going to a classic horse race, international rugby matches, festivals of speed, exhibitions, theatre trips….Enjoying life to the full, together, while Steve is still able to do so.
When Steve was first diagnosed with mesothelioma, I wondered whether he would still be alive for some important milestones in our lives – significant events like our daughter’s 21st birthday, our son’s 30th birthday; both of us reaching state “retirement” age – even though we are more active now than pre-diagnosis!  He has been there to enjoy all of them so far. The next big milestone is our 40th wedding anniversary, less than three weeks away as I write.  Another milestone within our grasp!
We know that this state of affairs won’t last forever and times will get very tough indeed.  However, when that day comes, we will have some wonderful experiences in the memory bank to look back on and enjoy, and we know there is a community of real and virtual friends who will be there for us, whenever we need them.
Things have changed so much for the better since Steve’s father was diagnosed with mesothelioma 20 years ago.  We can only hope that there will be a medical breakthrough in the next 20 years, the sooner the better, for those whose mesothelioma journey has already begun, although it may be decades before they become aware of their condition.  We also hope that during this time there will be a global ban on the manufacture, import, export and use of asbestos, and that the world will wake up to the threat from the asbestos that’s already woven into the fabric of our daily lives and take this threat seriously.  We owe this much to the victims who have gone before and those who are now fighting for their lives.  We send our love to each and every one of you.

Sunday 13 May 2012

Sharing with others

After the excitement of Morocco last week, the emphasis this week has been on sharing in various ways.....

....Artweeks is a time when artists and crafts people open their studios to the public for Oxfordshire's most important arts festival and the country's oldest and biggest open studio event.  In the past, Steve has exhibited during Artweek, both as an individual at home and with wocART, a group of West Oxford Artists.  However, since he was diagnosed with mesothelioma we started living our lives from one three monthly hospital assessment to the next. As a result, we have felt unable to commit ourselves to an event that you have to sign up to so far in advance, which is a pity.  

Last year, I was lucky enough to be invited to join a group Artweeks show very late in the day. The same happened again this year, when a member of the Nomads group had to drop out close to the event, and I joined as a replacement.  Steve helped me prepare in the few days between returning from Marrakech and the launch of the exhibition on Friday. The show runs all week in the centre of Oxford, finishing on 20 May.  If you find yourselves near here, please come and share the art!

To my delight, our daughter Katie who has been staying with us over the weekend for a belated birthday celebration, found time to view the exhibition as did Helen, a member of wocART, after finishing hanging her own work locally.  We repaid the complement yesterday evening by attending the launch of wocART's exhibition in the local community centre. It was lovely to see and talk to more members of Steve's former artist's group and share their news.  We may even get involved in a smaller event planned for June, if that's not tempting fate too much!

Today we shared a family meal out with Katie, before waving her off on the train back to London where she now lives.  

In between family get-togethers and exhibition preparation, we've been catching up on news from other meso warriors, who feel now like part of our extended meso family. Tess in Kent has had a bad scan result and has been taken off the drug trail that she has been participating in since last November. Tess, here are those positive vibes and hugs you asked for!  Debbie in Plymouth has also had some disease progression, and will shortly be zapping her tumour Theo with chemotherapy.  Will be thinking of you Debbie.  Shame on you Theo - go back to sleep!

Jan has decided not to take any further treatment until September.  Enjoy the summer with your hubby and the dogs, Jan... For Mavis, the news has been mixed.  Her body has taken a battering from chemotherapy, so she too is taking a break from treatment.  However, her tumour has shrunk, so that's great news.  Good news too for Amanda and Ray - the long waited scan results show a stable disease, so they can enjoy the next few months - have fun you two!

While we were away celebrating our wedding anniversary in Marrakech, Anna whose husband has just been diagnosed with mesothelioma, left a comment on the blog which said "we are both still in shock and very frightened.  Your blog has given us hope and I think it would help us to talk with others in our position.  Thank you for all the work you are doing.  I would love to help, but don't know how."  Anna, you have started helping already, although you may not realise it yet.  Keep in touch.

A comment like that reminds me how we felt when I started to write the blog, and our hope that sharing this experience would help others in the same position.  Soon Steve's story will be shared with others through the ADAO's website.  I hope that our experience of living with mesothelioma since June 2009 will help all of you stay positive in this most difficult time.  

Monday 7 May 2012

Ruby Tuesday - or how we celebrated our 40th wedding anniversary!

When Steve was diagnosed with mesothelioma in June 2009, I couldn't bear to think about the future.  Our Ruby wedding anniversary in 2012 seemed like a lifetime away; I hardly dared hope we would be able to celebrate forty years together.  But dreams can come true.  Last week on 1 May 2012, we celebrated our Ruby anniversary in style, in one of the world's red cities - Marrakech!

Arriving as the sun was setting, Marrakech was glowing in many shades of red ready to welcome us!  Click on the photos to get a better view.

Arriving at Marrakech

A short taxi ride later and we were at our base for the next six days, Riad Nesma, a peaceful oasis in the heart of Medina.  The adventure had started!

Our daily ritual started with breakfast on the roof terrace: freshly squeezed orange juice, coffee, boiled eggs, a variety of Moroccan pancakes, bread, butter, jam and honey to set us up for the day ahead.

Breakfast on the roof terrace, Riad Nesma

Our first day of exploring on Monday had a royal theme, visiting both the 16th century Badi Palace (now deserted but for tourists and many pairs of storks nesting on top of the outer walls) and the late 19th century Bahia Palace, which is bejeweled with brightly coloured zellij (mosaic) and painted doors and ceilings.

Badi Palace

Resting in the shade at the Badi Palace

Painted door at the Bahia Palace
In between the palaces, we wandered round the Mellah, the city's Jewish Quarter and had our first taste (and smell!) of walking through a souk - in this case, a herb and spice market.

The Mellah spice market

To celebrate our Ruby wedding anniversary on Tuesday, we walked to the Jardin Majorelle, created by landscape painter Jacque Majorelle and subsequently bought by fashion designer Yves Saint Laurent and donated to the people of Marrakech on his death.  Stunning planting, set off by brightly painted pots, garden furniture and buildings in cobalt blue, lemon yellow, bright orange and cool mint green.  

Steve at the Jardin Majorelle entrance courtyard

Vibrant colours at the Jardin Majorelle
What better place to stop and have lunch on our anniversary and admire Yves Saint Laurent's New Year card for 1972, the year we were married!

Lunch at Jardin Majorelle

1972 - the year we were married!
We watched the sun go down over the rooftops of Marrakech, with a bottle of fine Moroccan wine and a tasty meal on the roof terrace of a cafe bar close to the Badi Palace, entertained by the storks flying back and forth.

Sunset over Marrakech from the roof terrace of the Kosybar
Wednesday morning's sightseeing started at the Saadian tombs, resting place of the Saadian Sultan Ahmed el-Mansour who died in 1603 and was buried in splendour along with his mother, many wives, children, relatives and servants - more than 170 tombs, all richly decorated with zellij.  The site was sealed up by a successor after a few decades and, amazingly, not rediscovered until 1917 when it showed up on an aerial photograph!

Saadian tombs
Our visit to the tombs was followed by walk through the Kasbah and on through the central souks for lunch (and a rest!) on another restaurant roof terrace, before our afternoon visit to the Ali Ben Youssef Medersa (Quranic School).  Our jaws literally dropped open as we stepped inside and went through into the courtyard where the wonderful architecture was reflected in the central pool - stunningly beautiful!  

Steve in the shade at the Medersa

Sun at the Medersa

Reflections at the Medersa
Before heading back to the riad, we dropped into the Marrakech Museum nearby for a whistle stop tour followed by a rest in the shade with a refreshing mint tea!

Taking a break at the Marrakech Museum
Anyone who has been to Marrakech will tell you about the non-stop drama that happens throughout the day and well into the night at the main square, Djemaa el-Fna.  And that's where we headed off to for our evening meal on yet another restaurant roof terrace - the Grand Balcon.  Although the food is a long way off fine dining, it's good value and while you are eating and sipping your mint tea you are entertained by the action in the square below for free!

Sunset over Djema El-Fna

One of the many juice stalls

Hot food stall No 31
Although we had walked through the souks to reach various places during our first few days in Marrakech, on Thursday they were the main focal point of our morning outing.  The Dyers souk is particularly eye-catching.  Steve even allowed himself to be wrapped in a turban like a true Berber!

Berber Steve
Traveling with just hand luggage meant that we were unable to give way to the temptation to go on a spending spree, but we did enjoy looking!

Hand decorated plates

Mint tea glasses

Bag stall in one of the central souks
In the afternoon, we headed on to the Maison de la Photographie, where we enjoyed many historic photographs of Morocco, including some by British photographers. Upstairs, one of the highest roof terraces in the city gave us our first views of High Atlas mountains which make an awesome backdrop to the Marrakech skyline.

The snow-capped High Atlas mountains in the distance
After an evening drink at the Kosybar with the Badi Palace storks, we headed back to Djemaa El Fna square for another round of people watching as the sun went down on our last evening in Marrakech.

The riad kindly looked after our bags whilst we went sight-seeing for the last time before catching the plane back on Friday.  We had a closer look at the Koutoubia mosque minaret, a feature which dominates the Marrakech skyline and acts as a signpost when you get lost.  

Koutoubia mosque minaret
Lunch on another roof terrace restaurant, this time back in the Kasbah on the same level as the Badi Palace storks, high enough up to see the baby stork in the nest and witness the ritual dance when one bird returns to greet its partner who has been waiting on the nest.  

Pair of storks with young on the nest
Before leaving the Kasbah, we took a look at Bab Agnaou, a beautifully carved 12th century gate in the city walls - and very photogenic too!  

Bab Agnaou gate
Our last visit of the day before returning to the riad was to the Ensemble Artisanal, to look at some of Morocco's traditional crafts without feeling obliged to buy, which is often the case in the souks.  

The sun was setting over Marrakech as the plane took off to bring us back to the UK after our amazing Ruby wedding anniversary visit to Morocco. Wonderful!

I sometimes wonder whether Steve had already unknowingly inhaled asbestos fibres by the time we were married in 1972.  I certainly can't think of any occasion since then when he has been exposed to the lethal dust.  I wouldn't wish a diagnosis of mesothelioma on anyone. However, knowing that life will never be quite the same again helps focus the mind on important things and is a huge incentive to make the most of the remaining time whilst still able to enjoy life.  

Somehow, I doubt whether we would have visited Marrakech had circumstances been different. However, we would have missed out on an amazing experience.  Maybe we'll have the opportunity to return one day, but in the meantime we'll carry on enjoying our time together, albeit in a more familiar and less exotic environment for the time being!