Two years on....

Well Steve, we have reached the second anniversary of your death. Your last Valentine to me has pride of place on the mantelpiece, as it did last year and the year before.

I was stirred yesterday morning by bright sunshine slanting through the blinds and it took a few seconds to wake up properly before the significance of the date kicked in.  I confess I shed a tear on reading lovely messages from friends who also remembered this anniversary.  

However, it wasn't all sadness.  Daughter Katie joined me at lunchtime, and we walked, talked and dined together and toasted your memory.  She has returned to London this morning, so a chance to finish this post to mark the second anniversary of loosing you. 

Unlike last year, the run up to this anniversary has not been nearly as stressful.  Maybe its because I’ve been through many of those “first time without you” experiences and survived, even though its been difficult at times.....such as when I walked out of a Cuban music evening barely able to hold back the tears - the only person trying to salsa without a partner - remembering how much we enjoyed dancing together....

While the Steve-shaped hole in my life is still there, the void is slowly being filled with new experiences of living as a single person.  

I’ve carried on our grown up gap year, traveling far and wide over the last 12 months: Namibia, Scotland, Portugal, France and New York City, as well as getting out and about in the UK, meeting up with old friends, making new friends and enjoying some quality time with our grown up kids along the way.

The camera has been my companion on these travels, and photography is still proving to be a creative and social lifeline, as it was when you were alive and going through treatment.  For some reason, a few days ago I was flicking through old photos of our travels together, and I came across this one of you in Spain, at the memorial to those innocent people who lost their lives in the Madrid train bombings back in 2004, before you were diagnosed with terminal cancer.  The image has taken on a new significance now, watching you walk away from me in the darkness, but towards the light flooding in from above.  Sadness and hope at the same time.

I’m still in touch with the Meso Warriors - mainly those who have lost their loved ones to mesothelioma - but also the amazing Mavis Nye who was diagnosed with the disease around the same time as you but is now in remission after taking part in an immunotherapy drug trial which has given hope to so many.  Mavis has even started up her own charity to help others in her position and their families.  I was honoured to be invited to the launch and to take some photos to record the launch last December.

People like Mavis and Linda Reinstein in the States (who runs the Asbestos Disease Awareness Organisation) have my utmost admiration for the work they do.  I sometimes feel guilty that I’m not more actively involved in mesothelioma awareness advocacy, especially now this blog is only updated infrequently.  However, people still read it from time to time, and I’ve had nice messages from those who have found it helpful, including a lady who had no idea what to expect at the Coroner’s Inquest but didn’t find it quite so scary after reading about my experience on the blog, so I guess that’s a contribution in some small way....

The idea of creating a public artwork as a permanent memorial to you has moved forward another baby step, with discussions about its form (a "human" sundial) and location in what will be a little pocket park next to the Thames at the Osney Lock.  However, its taking a while to get lottery funding for the overall landscaping scheme, and there is no sign of anything happening on the ground as yet. Hopefully, some time over the next 12 months, the project will reach fruition, or at least take another step forward....

Who knows what the next year will bring to me, our family and the wider mesothelioma community?  It will be interesting to look back in 12 months time to find out.  Until then - your memory will not fade away.... 

Flying in a holding pattern

About this time last year, Steve's meso started growing again after being knocked back by the standard treatment of pemetrexed/carboplatin over the winter of 2012/13.  

The meso carried on growing, albeit slowly, through the VanSel early phase drug trial that Steve took part in between February and April this year.  So it came as no surprise yesterday to find out at Steve's assessment that there has been disease progression.  However, seeing the X-ray from January displayed next to yesterday's X-ray was a reality check; a noticeable increase in pleural thickening and tumour growth at the base of his right lung, wiping out any faint flicker of hope that there might have been a delayed response to the trial drugs.

Although there is another clinical trial currently recruiting in Oxford, it's a dose escalation study and has only recently started, so the clinical trials team know it will be some time before they reach an effective dose.  Dr Ioannis advised that he didn't think it worth putting Steve into this trial so early in the dose escalation as he probably wouldn't benefit.  

However, we understand that there are other things in the pipeline which are possibilities.  To see whether Steve might be eligible, he had bloods taken for testing: C&G, CF7 and BF7 (if we have read the doctor's hand-writing correctly). Does any one know what these tests are for?  I've googled but found nothing - at least nothing relating to blood tests....

There are also options to re-challenge with pemetrexed / carboplatin, which produced a good response last time around, and to explore clinical trials which are recruiting elsewhere.  We told him about the MK-3475 trial that fellow meso warrior Mavis is on at the Royal Marsden, and how promising her scan results were.  He is happy to refer, if Steve wants to see what's on offer at other hospitals.

The doctor has asked for another scan to be arranged in the next couple of weeks to compare the results with the scan taken towards the end of the VanSel drug trial, in early April. This will give an indication of the speed of disease progression, which may help decide the best option to go forward.  

The scan will also show whether the lump on his chest is meso-related or not.  The doctor thinks not, based on the X-ray.  However, the more detailed scan will clarify this. Whatever it is, thankfully it's causing no pain.  In fact, Steve is still feeling good and leading a "normal" life to all intents and purposes - walking, lifting, carrying with no significant problems.

If disease progression is speeding up, Steve may wish to start treatment with pemetrexed and carboplatin sooner rather than later.  If the meso is still relatively slow-growing, Steve may wish to hold off treatment until after Christmas, or whenever a promising trial is open for him.  

We have another appointment with the clinical trials unit in late September.  Steve will also be given an appointment with the consultant oncologist Dr T, to discuss all the options when the scan results are known.  That way he remains on the clinical trials waiting list, but can also have more of the standard chemo if that's considered to be the way forward. 

So....sometime in the next 4-6 weeks, we will have a better idea of the best course of action.  In the meantime, it feels like we are flying in a holding pattern until cleared to land on one treatment option runway or another.  

Whatever happens, we will make the most of the next few weeks! Arrangements are already in place for family gatherings in London and Bristol.  Flights and accommodation are booked for a get-together with our photographer friends in Heidelberg.  The last big push on the garden makeover starts next week, with a contractor doing the really hard work....We can just sit back, watch, and enjoy choosing the plants ready to plant out when it's all finished in a few weeks time!  

With Oxford Open Doors, London Open House, Oxford Thai Festival and St Giles Fair to look forward to in the next few weeks, some socialising and a work-related trip to Guernsey (as well as a scan and more hospital appointments) September looks like it will be another busy month with little time to get too stressed about what happens next. That's the theory anyway...

Treading water

It feels a bit like we've been treading water this week, waiting for things to happen...

Four weeks after finishing the VanSel early phase drug trail, Steve is still not fully recovered from the side effects of treatment...or perhaps we should call them after effects?  

Although his facial hair has started growing again (back to daily shaves!) the hair on his head is now falling out more noticeably.  Hair loss wasn't listed as a side effect of treatment, so the trials team might be a bit surprised when we tell them what's happened at the post-trial check up next week.

Tiredness continues to be a problem.  Steve still doesn't feel confident enough to go out for a whole day, so sadly we had to decline an invitation to join friends on a day trip to the RHS garden, Wisley.  However, he did manage an afternoon out with our friends Jonathan and Sally on Bank Holiday Monday, visiting the gardens at Turn End in Haddenham, which were open to the public under the National Gardens Scheme.  Such a welcome change of scenery after spending so much time in the house or in hospital.

Turn End, Haddenham

The other highlight of the week was marking our daughter's birthday, albeit quietly at home.  When Steve was diagnosed, I wondered whether he would be able to celebrate her 21st birthday.  He did and it has been a great delight to be around for four more birthdays since then!

The rest of the week has been low key.  I've had my head down preparing for a work-related trip to Guernsey.  Progress the garden makeover project has been negligible as we are still waiting for quotes from the contractors who viewed the site last week and for another contractor to come and look this week.  He eventually arrived a day late due to an unexpected domestic crisis, but doesn't have a slot in his programme until the end of July.  The new fencing which was due to be delivered yesterday didn't arrive due to a mix up between the supplier and the delivery people.  Dreams of having a lovely garden in time to enjoy summer are fading rapidly....

In spite of all this treading water, May seems to be going by rapidly.  Fellow blogger Amanda was talking about time being elastic - how right she is...We feel unable to make commitments more than three months in advance, never knowing from scan to scan when the meso is going to flare up, yet here we are getting excited about a garden makeover which will take a lot longer to come to fruition!

Although Amanda's Ray is doing well, many of our other meso warrior friends  are going through, or about to start or re-start chemo or Phase 1 clinical trials.  

Thinking of you all, as always x

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traveling, going into Orbit at the Olympic Park....and a birthday

It's been a week of trains, boats, planes, buses and lots of walking!


I flew to the Channel Islands on Monday to chair Tribunal meetings on Tuesday and Wednesday.  In a rare opportunity to mix business with pleasure, on this occasion I was able to get the bus to a beach on the west coast of Guernsey in the early evening and fit in a round trip by boat to the neighboring island of Herm to walk to Shell Beach before flying home the next day.

Cobo Bay, Guernsey

Alderney Point, Shell Beach, Harm

Flying home over the Isle of Wight

A day of unpacking and catching up on Thursday, followed by a round trip by car to Bristol on Friday to see Steve's mum, pay a fleeting visit to son Jack, but sadly not go up in a hot air balloon (again!). 


Yesterday, we traveled to London by train, met up with daughter Katie and partner Ed at St Pancras International and caught the Javelin train to Stratford where we spend the day at the Olympic Park. A smooth journey, lots of happy helpful staff to point us in the right direction, a thorough but speedy security search and we were in the Park!  

Katie, Ed and Steve at the Olympic Park entrance

Aquatics Centre

Basket Ball Arena

Seeing it from the outside or on TV is one thing, but being there in person you really appreciate the size of the place and the atmosphere....although we didn't have tickets for any of the sporting events, we could hear the cheers of the crowds in the Aquatics Centre and Basket Ball Arena, all helping to create a good mood.


We spend the entire day walking the park, meandering along the River Lea, photographing eye catching buildings, the outdoor art works, wonderful soft landscaping of trees and wild flowers, and the groups of entertainers who were wandering about...

The entertainers

Wild flowers at the Olympic Park

Walking on the Olympic carpet!

Water Polo centre

After lunch, we found somewhere to sit and watch the Cycle Road Race on the big screen and relax in the sunshine until it was time for our visit to Orbit, the quirky observation tower designed by Anish Kapoor.  

Watching the Cycling Road Race on the Big Screen

Orbit from below

Great views over the Olympic Park, including views down in the Stadium where the flame was burning as the sets from the opening ceremony were being dismantled, out over central London and beyond, then a slow walk down the spiral staircase and time for tea!

Steve, Ed and Katie look out over London from the top of Orbit

Looking down into the Stadium and at the Olympic flame from Orbit 

Walking down to ground level

Our last walk of the day took us to the Velodrome, which is huge!  A simple, but very beautiful design.  

The Velodrome

By then, we were all pretty tired and foot sore, so caught the mobility buggy back to the Stratford Gate entrance, where we said our goodbyes to Katie and Ed before heading back on the Javelin into central London and on to Paddington to catch the train home.  One very special day!


I woke up this morning to Steve's birthday card, lots of birthday greetings from my Facebook friends all over the world.  That's pretty amazing too - thank you all for your kind wishes!  


We are out for lunch today with friends Jonathan and Sally, so I will think about my birthday wishes tomorrow.  It's been quite a week, one way or another, and another family milestone we've been able to share, over 37 months since Steve was diagnosed with mesothelioma. 

torch, tickets, travel, togetherness...

I wasn't born the last time the Olympic Games came to London. When it was announced in July 2005 that the Games would return in 2012, it seemed like the opportunity of a lifetime to be part of one of those events where the world comes together in "mutual understanding, with a spirit of friendship, solidarity and fair play" (to quote the Olympic Charter). Keen to get experience, I volunteered to marshal the London stage of the Tour de France in 2007 and registered as a "Games Maker" for the next London Olympics. That dream came to an end when Steve was diagnosed with mesothelioma in the summer of 2009.  I couldn't see three months ahead, let alone three years into the future.  


Now the London 2012 Olympics are less than a fortnight away and, three years on, Steve is still here very much alive and well. Although sceptical of all the hype that goes hand in hand with such an event, Steve's interest was captured when the Olympic Torch relay passed through an area where he had lived as a child.  Since then we have dipped into the TV coverage from time to time, especially when the Torch Relay visits places we have connections with.  


Last Monday, it was Oxford's turn.  Although we had missed out in tickets for the main local event - a party in South Park - I couldn't resist the opportunity to see it happen live on the streets.  I've yet to discover how watch, clap and take a photo at the same time, so the pictures are not brilliant. However, the atmosphere was great - a huge number of people, but everyone in a good mood!  I'm so glad I went. 

Flag seller

Sol Samba getting everyone in the party mood

The next torch bearer waits her turn!

The Torch Relay bus 

The Torch bearer 

Torch bearers who have done their bit follow on

Crowds return home after the Torch Relay has passed on

Steve was watching the event from the comfort of home. When we looked carefully on the i-player afterwards, we managed to spot a small familiar looking blob, standing on the Victoria Fountain on the Plain in St Clements, waving a camera around in the background! 


Like many others, our attempts to buy tickets for the sporting events didn't bear fruit.  However, the tickets to visit the Olympic Park and go up Orbit have now arrived and, all being well, that's where we'll be in two weeks time, along with goodness knows how many people.  If the atmosphere is anything like the Torch Relay, it will be worth it in spite of the inevitable crowds, queues and travel congestion.  Another milestone in our lives together, post-diagnosis!


Other travel plans have come together in the last week - a work trip to Guernsey for me; a family holiday in Carcassonne in September, before Steve's next scan and assessment; a day at "Glorious Goodwood" races and stopover with friends in Chichester in early August; a house party here later in August, when we will come together with friends to form "Team Finch" in support of Rob who is taking part in the Brompton (folding bike) World Championships at Blenheim Palace.  We have also worked out the logistics of getting to and from Wales in mid-August,  for a three day walk from the Brecon Beacons to Cardiff Bay. Just waiting for a break in the weather long enough to fit in a hot air balloon trip, following cancellations last August, September and again this June....a reminder of how horrible the weather has been.....


A meal with our dear friends Jon and Sally got last weekend off to a lovely start.  This weekend, we hope to come together with other locals for the West Oxford 1st Olympiad Absurd Olympics Fun Day. Amazingly, the rain has stopped and I can hear the sound of singing wafting over from the park...time to come together again and enjoy the Olympic spirit!

Family, friends, art and sport.......and work

If you follow the blog, you will know that we are reluctant to make plans beyond the date of Steve's next assessment, not wishing to go back on commitments if the news is bad.  As a result, the first few weeks of the next three months of our lives tend to be rather low key in terms of activity as we slowly get back up to speed deciding what to do and making arrangements.  It's been rather different this time round, with some delightful, largely unplanned events!


The first weekend following Steve's last assessment, we had a long day out in London with our daughter Katie and her partner, Ed. After eventually finding each other among the crowds at Kings Cross/St Pancras, we headed off for the nearby Dog Eared Gallery to see a photography exhibition "We British" before lunch.  The early part of the afternoon was spent on a fascinating history tour of St Pancras Renaissance Hotel (the former Midland Grand Railway Hotel designed by Sir George Gilbert Scott) before traveling on to tea at Tate Modern, a visit to the Damien Hurst exhibition then back up to the Members Room for a glass of wine and more food to keep us going for the journey home!

We were off again for another family get together later in the week, this time in Bristol to see our son Jack and call in on Steve's mum to deliver a card and present for her birthday a few days later.  On the way we passed the most amazing poppy field. Couldn't resist it!

More socialising on Friday following an unexpected invitation to lunch with our friends Ian and Ruth, their daughter Em and partner Nick, before Ian departed for another stint of work overseas. Not only was the food great, but it was also a chance to meet up with other friends, Anne and Colin visiting from Chichester.  


A passing remark about the "Osney Olympics" and plans for the following Saturday afternoon were quickly sorted out. For those of you who don't know Oxford, Osney is an island very close to where we live, connected to the rest of West Oxford by a single bridge over a side stream of the Thames. Traditionally it holds an annual round-the-island race of home made rafts crewed by brave (mad?) people in fancy dress.  


This year, the event turned into the Diamond Jubilee Olympics, with a mile run three times round the island; plastic duck racing on the weir; race events and competitions for all ages - skate board slalom, hobby horse dressage, egg throwing, slow bicycle race (where the winner comes last....) as well as synchronised swimming - a bit weird with only one swimmer - and synchronised walking, which was hilarious to watch.  Sadly the raft race was abandoned due to high/fast water in the Thames, but the tug of war along the tow path made up for it!  

Over tea and cakes back at our house, as we dried off after a torrential downpour, we started hatching plans for our next get together in August - something to look forward to if it comes off!


In between all this social activity, we have managed to fit in some work.  The front hedge is now cut and we can see out of the window.  We've started clearing the jungle in the back garden so at least we can reach to clean the windows at the back of the house, if the gaps between showers allow us.  


I've finished a private planning consultancy job for friends, and after a meeting with the Council on Monday it looks like peace has broken out, I'm delighted to say. More planning work is lined up in Guernsey the week after next, then I shall be happy to take a break for a while. September in France, here we come - all being well!


In the meantime, as well as the Osney Olympics, we have watched England go out of Euro 2012 and Andy Murray get through to the quarter finals at Wimbledon.  He's playing David Ferrer as I write, or rather the rain has stopped play....again.  Happy July everyone!  Still waiting for the Olympic Park tickets to arrive.  Soon I hope, otherwise we won't be able to go up the Orbit!


Thinking about our plans for the summer brings home to me once more how lucky we are at present, especially when others are having a tough time with pain, chemo and difficult decisions to make about mesothelioma treatment, or have recently lost the battle, like Larry Davis in the USA who was diagnosed in July 2006 and has been an inspiration for many, raising money running "Miles for Meso".  I don't think I can run miles any more, but I may do a sponsored walk.  Watch this space :-)


Post script:  the rain stopped, tennis resumed at Wimbledon and Murray is through to the semi-final!

Assessment day

Assessment day.  Steve went off for his X-ray first thing, then we moved on to the day clinic to hear what the doctor has to say.  The usual wait sitting on our own in the consulting room, which we find agonizingly long, then the doctor entered - one we have met before, but not the consultant who seems to have the knack of putting us at ease.......

......the usual questions "how are you feeling?"  "any problems?" "any coughing?" "are you on any medication at all, even non-prescribed medication?"  I wondered how Steve would answer this, as he takes supplements to help boost his immune system and an anti-inflammatory med which, as well as helping with his arthritis, has been found to suppress tumour growth in some studies.  He mentioned the latter, but the doctor said nothing, other than another long, slow "oo---kay" which gave nothing away, but wasn't exactly reassuring.....

On to the table for a chest examination, percussion then listening to his breathing through the stethoscope.....then, at last, some feedback.

The doctor was pleased to see how well he was.  Steve pointed out that he usually gets weighed wearing his fleece, with a big bunch of keys, wallet and phone in the pocket, but today he'd removed his jacket before getting on the scales, which would explain the apparent small weight loss.  

She then looked at his notes and said it had been a while since he had a CT scan - in fact he hasn't had one since 2009.  She said she thought it was time for a new one, partly to have an up-to-date baseline for future assessments, and partly because the radiologist had noted what appeared to be areas of change on both the current X-ray and the last one.  Nothing significant, possibly a millimetre or so in some areas.  However, a scan would show any changes in more detail.  

In some ways this news was not surprising.  We have been told at previous assessments that his mesothelioma was growing, but so slowly that the difference was imperceptible in X-rays taken three months apart.  It only became apparent when comparing the most recent X-ray with the one taken in 2009.  

To all intents and purposes, the disease was stable.  We were also told at the outset that if there were any signs of change they would look more closely on a CT scan.  We should be grateful that this is the first time it's happened in the three years since diagnosis.  

In spite of knowing this, I confess to feeling slightly apprehensive and uneasy that the doctor wants Steve to have a scan now - for no other reason than it's reminder that there has been some slow disease progression and it's reached the point when they want to look more closely.  That said, many people with mesothelioma seem have a scan before every assessment, so he's the unusual one in that respect.  

Whilst I'm feeling somewhat apprehensive, Steve, on the other hand, is much more positive.  He's pointed out that few millimeters change over three years is not an aggressive growth and he still feels fine.  Unlike some Meso Warriors, pain is not an issue for Steve and, most of the time, if he didn't know he had mesothelioma he would be blissfully unaware of the sleeping dragon inside.

On the positive side, the doctor said there's no great urgency to have the scan. She will arrange an appointment for fortnight before his next assessment so that we can look at the results when we meet again.  Unless he has a problem in the interim, she doesn't want to see him before mid-September, when he is due for the next regular three-monthly assessment.

Time to put the apprehension behind me so that we can get on and enjoy life over the summer!

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!

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....  

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!