Wednesday 31 August 2011

au revoir August

Here we are, the last day of August. Oh boy - that summer went quickly!

Our weather dependent plans for last weekend didn't work out as we had hoped, but we did get to see some of the Wride family in Bristol and catch up with their news so it was a worthwhile trip nevertheless. The pictures from the Coast exhibition have been collected, so we are up-to-date on that front too. 

We are now busy preparing for our next adventure - a little something to help take our minds off Steve's hospital assessment in a fortnight.  If you want to know what we've been up to, call back next week sometime......  

Saturday 27 August 2011

a week in pictures

After the excitement of the Brompton World Championship Race last weekend it has been a relatively quiet week here, dominated by pictures of one sort or another.  

We spent a day in London looking at other people's pictures and art installations in Tate Britain, then hopped on the river bus to Tate Modern for a long leisurely lunch enjoying the views of St Paul's Cathedral across the river before taking in some more artwork later that day.

City skyline - Linda

We've collected a print from the Artspool Gallery which was inadvertently left behind at the end of the Artweeks exhibition back in May, and delivered our prints to the Nuffield Orthopaedic Centre (NOC) here in Oxford which will be hung later today as part of the Art for Wards exhibition to cheer up patients and staff :-)

Tulips - Steve

Our dear friend and neighour Ludo bravely volunteered to act as a model for our first tentative steps in portrait photography in return for a set of prints.  Only now do I fully appreciate why portrait photographers have assistants, make-up, hair stylists and wardrobe artists to help them!

Ludo supermodel

This is the last weekend of the Coast exhibition at the Cornerstone Gallery, so we'll be back there next week to collect any unsold prints.

Piel Island - Steve

Bank Holiday, Brighton - Linda

Before then, we have plans for the weekend.  However, the main event is weather dependent, so you'll have to drop by next week to see whether or not it happened. I can say that we won't be sitting in the mud at the Reading Festival....been there, done that......why does it always seem to rain over the bank holiday Festival weekend?

Coming back from the NOC this morning, we both noticed that the leaves on the trees are beginning to change colour and the light is different, signaling the start of a new season. Steve's next hospital assessment is just over a fortnight away, which means inevitably that tensions and stress levels will start to rise as we wait to find out what's been going on inside over the last three months. Time to keep ourselves occupied with enjoyable things and make the most of any sunshine we can find!  

Last but not least, we send our love to Mavis who was diagnosed with mesothelioma in June 2009, like Steve.  As she says, we have been traveling this journey together. Today is a very special day for Mavis - her 70th birthday. Have a great day Mavis and many happy returns!

Mavis by Ray (I'm guessing!)

Monday 22 August 2011

cheering on a friend at the world championship!

If one of your friends was taking part in a world championship, wouldn't you be excited?  We were!  Rob came all the way down from Leeds on Saturday to take part in a cycle race at Blenheim Palace, not far from here.  And not just any old cycle race.  This was a world championship! For people on Brompton folding bikes.  And you had to cycle two laps round the parkland of Blenheim Palace wearing a suit jacket or blazer, shirt with a collar and a tie, in keeping with the Brompton's main market - commuters and city dwellers ;-)

The support team pumped him full of calories on Saturday night to give him sustained energy and took him off to Woodstock for the race, one of a number held that day to raise funds for breast cancer awareness.  We cheered him off at the start, caught up with him again on lap 2 and made it back to the finish in time to see him cross the line.  

Well done Rob and to everyone else who took part, especially those wearing even more creative versions of the business suit.  What a hoot!  I am tempted to get my Brompton out of the garden shed where it has been mouldering away for the last ten years and have a go myself next year.  Even Steve is toying with the idea of taking part.  Oh, the joy of positive thinking!

Wednesday 17 August 2011

two years, two months, one day....and still counting

When Steve was diagnosed with mesothelioma on 16 June 2009, our world fell apart. I could not bring myself to think about what lay ahead. The future was a no-go area.  And here we are, two years, two months and one day since diagnosis and still counting. Steve is very much alive and kicking.  We are living life to the full and trying to make the most of every day (although I must remember to build in some time to relax - chilling out is good too!)

We are both acutely aware that Steve is very fortunate to have had a stable disease for so long. Others have not been so lucky. Today's blog is dedicated to all those with mesothelioma who have lost the fight, their families and friends. It is also dedicated to all the bravo meso warriors who continue to battle the disease, and those who support them so courageously. We follow your stories and share your emotions.  

In particular, today's blog is dedicated to Mavis who will find out on Friday whether she will be taking part in a drug trial at Barts or receiving standard chemo, and to Ronny who started Vinorelbine chemotherapy today, determined to make the most of whatever chance she has of extending her life - as she says, a less than 10% chance of a positive response is still better than no chance at all. Keep up the positive attitude Ronny!  

I am finishing today's with words from Julie in Australia who has discontinued chemotherapy three years post-diagnosis and is now waging her fight on a different level, going with nature.  Although her tumours had grown alarmingly, she remains positive.  She finished her most recent blog with the following words, which express her emotions so eloquently:
Mentally – I think I have come to a very good place.  I have times of feeling completely at peace and acceptance.   Seemingly simple things give me great joy.  I have always believed that bad things are never all bad  Some good comes out of the the worst situations.   Of course there are the times when dark thoughts creep up on me – but these are becoming less often now.   I think we have those thoughts whether we are sick or not.
I hope that when our time comes, we can all find such peace.  Stay warm Julie x

Tuesday 16 August 2011

all lit up but nowhere to go....

We enjoyed our recent hot air balloon trip so much that when the opportunity came along to do it again - but this time, flying with more than 100 other balloons at the Bristol International Balloon Fiesta - we grabbed it gleefully.

Although Sunday dawned with bright sun and blues skies, sadly the wind was too strong for the mass ascent that evening so we didn't take to the skies after all.  However, Steve is determined to be around to try to fly again at next year's fiesta, a measure of how good he is feeling at the moment. 

Nevertheless, we did get to enjoy the "night glow" on Saturday evening, when the balloons inflate as darkness falls and turn their burners on and off to coordinate with music.

We also enjoyed an amazing display by the Red Arrows on Sunday afternoon. 

And we do get another chance to fly over Bristol, which will be wonderful even without the company of other balloons!  

Here we are in the Virgin balloon, a couple of weeks ago over Oxfordshire

Wednesday 10 August 2011

True grit - Ronny's story

Mesothelioma is an awful disease - incurable, unpredictable, aggressive.  However, looking back through the blog brings home to me how fortunate Steve is that his condition has been stable since he was diagnosed almost 26 months ago, and how lucky he is to be able to enjoy life without physical pain, in spite of his compromised lung. The emotional turmoil of living with a terminal illness is something we have just had to learn to face up to, and manage. 

As the side effects of chemo wore off in 2010, our day-to-day lives got better and better. We have crammed so much into the the last few months since I finished work, that the blog now reads a bit like a cross between a travelogue and Red Letter Day brochure.  We have our ups and downs, closely following the cycle of three monthly hospital assessments, and we can never put out of our minds just how vulnerable Steve is, knowing that Leo the mesothelioma could decide to rouse himself at any time.  But that has not stopped us enjoying life.

However, if you dip into the blog from time time you will know that other meso warriors have not been so fortunate in terms of survival, disease progression and the treatment regimes they undergone to improve their chances of survival. It never ceases to amaze me how brave, dignified, resourceful, supportive and determined they all are, taking the chemo and fighting back with every ounce of their strength.

Today's blog is dedicated to Veronica White - or Ronny, as she is known to her family and friends.  Following the diagnosis of mesothelioma in April 2008, she has had surgery, mainline chemotherapy and made numerous trips to Germany for chemoembolization under Prof Vogl. If you want to know the whole story, check out her blog (link on the right under We are not alone)

Two weeks ago, Ronny posted on the blog the news that no one wanted to hear:

"Well, the time has come. My Oncologist says that I am in a dangerous phase, a euphemism for ‘final stage’. He says I have just 4 – 8 months to live and that he doesn’t recommend me going onto chemo as he thinks I am so weak that the side effects will outweigh the benefits, if any..... He has given me steroids to make me stronger and will see me in a week and will talk about chemo then. This has been a big shock to us as my last appointment said I was pretty stable, now he says it is growing aggressively and has penetrated my abdomen too....

I am sorry for the bad news, but although we knew it was just a matter of time, it still comes as a shock"

A few days later, her fighting spirit had come back with a vengeance - or as she so eloquently put it "Well, sod it, I am not giving up!"  And back she went to Germany for more treatment, which the Prof says will help make her more comfortable.  In her most recent post, Ronny says:

"I realise this is now the end game, but whilst there is fight in me I won’t give up. My family are all behind me in this too....Thank you all so much for your kind support; it makes me feel I have an army on my side! In all of this I have made some very good and kind friends" 

Ronny, if you read this I just want to say what an inspiration you are.  Real, true grit!  We all send our love, hugs and support to help you fight on. Have many, many more happy days with your family and friends.  

Thursday 4 August 2011

wet, wild and on top of the world!

Last Christmas, Steve's present to me was a boat rip of my choice.  I'm not sure what he was expecting me to go for....but yesterday he found out!  I opted for something a bit adventurous - an extreme RIB (rigid inflatable boat) experience. 

The Seadogz website says "Ever wanted to feel like James Bond racing away from the bad guys, with the wind in your hair and adrenaline pumping through your veins?  Then this trip is for you!"  Sounded good to me, so I booked us in for 90 minutes of going wild and getting wet on Southampton Water.

There were a few moments at the safety briefing when we wondered whether I had done the right thing, particularly when the skipper said you might want to think twice about this if you have problems with your lower back or knees (as it gets a bit bumpy out there) or fingers (which you will need to grip tight with). But we decided to have a go anyway and didn't regret a second!

The weather was perfect - hot, blue sky, barely a breeze.  If anything, too calm for a good splash, so after heading out of the marina slowly, the skipper made for the wake of the nearest large boat and cut across it at an angle to skim the waves at speed and give us a taste of what was to follow - jumping the waves, turning and zig-zagging through any bit of rough water he could find.  

It was SO exciting!  Sort of cross between cornering on a powerful motor bike round the bends of a fast race track, riding a frisky horse bareback over high jumps and going down the log flume at a theme park, with added water (speaking from imagination rather than experience!)  We would have happily gone round again.....May be another time.

What do you do after such an adrenaline high? Zoom to the top of a 170m tall structure - the Spinnaker Tower in Portsmouth.  The tower is taller than the London Eye, Blackpool Tower and Big Ben so the views over the south coast on a wonderful clear day like yesterday were breathtaking. 

We dared to walk on air (or rather step out on to the glass floor) on Deck 1 to look down at Gunwharf Quays beneath our feet and enjoyed the view over a cup of tea in the cafe on Deck 2.  Then we climbed up to the "crows nest" at the top for a last look over the Solent and Isle of Wight before the descent. 

The views from the Spinnaker Tower had whetted our appetites, so before leaving for home we took the opportunity to wander around the historic dockyard - although it was too late (and I confess, we were too tired) to explore the museums and ships. 

We both agreed that was one of the best days out we can remember. We may go back one day - perhaps abseil down the tower to raise money for charity! Who knows? Whatever happens, we have some more treasured memories to share. When the going gets tough, we can look back on days like yesterday in the knowledge that we have enjoyed life to the full in spite of Leo lurking in Steve's lungs.

Wednesday 3 August 2011

the rest of the birthday weekend and a teaser about what happened next

The extended birthday celebrations last weekend included a trip to London on Saturday for the opening of the London Salon of Photography's Centenary Exhibition at St James, which includes one of my images Sky Frames, and a flying visit to the Royal Academy before catching the train back to Oxford. 

On Sunday we had lunch out with our dear friends Jon and Sally - wonderful food prepared by their daughters and unexpected reunions with people we hadn't seen for many years.  As usual, we found it hard to drag ourselves away so it was evening before we arrived home, full, tired but in excellent spirits!

Katie's departure back to Manchester on Monday afternoon marked the end of a special birthday weekend, but we haven't had time to get bored since then. There were more adventures today, including two first time experiences.  But more of that tomorrow.....

......I hope the sun shone wherever you were today, as it did on us.  Life is good :-)