Saturday, 30 January 2010

turning back the clock

Since Steve's diagnosis, I often think how much I would like to turn back the clock to the time he was exposed to asbestos - whenever that was - and stop him breathing in those fibres. Sadly, that's not possible.  

However, I can take you back though the years to show you a portrait of the artist as a young man....the journey starts in the here and now, with Steve's most recent passport photo, taken just a few days ago.  

What a pity you're not allowed to smile these days for your official mug shot.  Steve usually looks a lot happier than this, in spite of everything - honest!  We searched high and low in the city centre to find a photo booth, without success.  So I had to try my hand at portrait photography, and here's the result.  No specs allowed, which explains why he looks just a little unfocussed. Or perhaps it's the strain of keeping a straight face! Renewing his passport is a good sign that Steve is thinking positively.  When the new one arrives, come spring, we'll be ready to roam!

A decade earlier this time, 1999 - getting ready for the new millennium. Jack and Katie were still at home, and I still worked at Oxford City Council. Everything has change since then! 

This is a scan from Steve's last passport photo taken in a booth. As you can see, he couldn't keep a straight face then either!

Time to turn the clock back again, this time to 1989:

Check out those glasses!

Katie was born that year. Steve boasted that when he was 60, he would be walking out with a beautiful 18 year old young woman - which he did...

Back another decade, and we've gone into black and white.  Steve assures me that they are NOT the same glasses.  

1979 and we were DINKies, in our first (and still only) house of our own. It would be another two years before Jack would be born. We are now in the Glossies era!  Some of you may remember our little shop in North Parade Avenue, where Steve produced brilliant silkscreened and airbrushed images of his own design on window blinds made to order, and I contributed a few "soft sculpture" cakes, applique cushions, painted silk scarves and mirrors.

Turn back the clock again.........It's 1973, and that hairy man is the chap I had married the previous year.

Yes, it really is Steve under the flowing locks, beard and mustache. Hadn't quite grown out of being hippies - well he was still a student at that time, although I had started work initially at the Poly, then on to the City Council. We lived in a flat on Iffley Road and had some very good parties I seem to recall....

Back to 1969 now - the hair is not quite so long and has yet to adorn the face.  This is how I remember Steve when I first met him...and thought to myself what a weird name, little knowing that some three years later I would be sharing it and spelling out the letters for others.

Remember those Indian silk scarves? I think we still have the one Steve's wearing in the photo - somewhere!

Coming towards the end of the rogue's gallery now....

It's 1967......Steve had left school and started as an architecture student at Oxford Poly (now Brookes Uni).  And here he is in his student ID card - looking remarkably smart, don't you think?

I didn't know him at the time - I was still living in London, at school doing my A Levels. But I have no doubt that I would have fancied him, had we bumped into each other!

And so to the last picture in this series (don't worry, I'm not going to get the baby photos out!)

It's 1965 and guess who's a mod?  

Why Steve, what smoldering eyes you have! 

Steve was 18 years old at the time. Actually he hasn't changed that much with the passing of time...

Looking through this gallery, we decided it needed updating, with a picture of Steve wearing his specs and looking normal with a smile on his face. But that will have to wait for another time!

While we're on a photographic theme, I have two things to report - a man called Howard Grill has paid me a nice compliment on his photography blog Motivation.  He likes my mono work! 

...and I've had an image shortlisted in the International Garden Photographer of the Year Competition, but it will be a while before I know whether it makes the final selection. Not holding my breath, as the same thing happened last year, but I fell at the last fence. Still, it's pleasing to get this far!

One of the reasons I filled today's blog with a photo gallery (other than wanting to entertain you) is that there is no news on Steve's health front. The tingles in his fingers and toes continue, but haven't got noticeably worse. Apart from that life goes on as normal....

Don't worry about long silences on the blog in the next few's simply because I will be working away from home for much of next week, and the week after. As Steve will be on his own, please do send him the occasional e-mail so he knows he isn't forgotten ;-)

Saturday, 23 January 2010

there may be trouble ahead......

The medical term is "peripheral neuropathy".  When I've talked about on the blog, I've called it tingling. Steve describes it thus: think of those occasions when your arm or leg has gone to sleep after lying on it awkwardly overnight - there is a point between complete numbness and the onset of really sharp pins and needles as the limb comes back to life. It's that in-between feeling that Steve is experiencing at the moment in his hands and feet.  

It seems that nerve sheaths are vulnerable to attack by chemo drugs - it's an acknowledged side effect of both Cisplatin and Velcade, which Steve took for six cycles last year.  Under the heading Most common Velcade Risks, the drug trail leaflet refers to "painful sensations or numbness and tingling in hands and feet, which may not get better after discontinuation of Velcade".  The paragraph on the side effects of Cisplatin states "Occasionally Cisplatin can damage small nerves, which may cause ringing in the ears and mild deafness, or tingling or numbness in the hands and feet....The damage to small nerves usually - but not always, resolves over a few months".  

As Steve wasn't bothered by this problem during treatment, we think the main culprit is probably the Cisplatin. However, the tingling has become more noticeable over the last few weeks, and is getting worse, so we've been doing a bit of research online to find out more. One study found that peripheral neuropathy peaks some 3-5 months after treatment ceases. This is rather alarming, bearing in mind that the last dose of Cisplatin was on 6 November, less than three months ago. The problem is manageable at the moment, but if it gets much worse, I think may be some help may be required. But for the time being, we'll see whether good diet, the occasional massage and a bit more exercise can keep it under control.

There may be trouble ahead
But while there's music and moonlight and love and romance
Let's face the music and dance 

Wednesday, 20 January 2010

toes and snows

Steve continues to experience tingling in his extremities - well hands and feet, to be more precise! 

The problem with his toes seems to be exacerbated by wearing socks and heavy shoes, so he continues to wear his walking sandals around the house.  Bit of a problem when he wants to go out though, especially today when the snow has returned and is falling thick and fast as I write (but not sticking, so far). However, the walk into town for the new photo necessary to renew his passport will have to wait for a day or two.

Usually, this time of the year we are cheering ourselves up by planning holidays for the spring and summer. But things are a bit different this year. Rather than finalizing our travel and accommodation arrangements far in advance, we'll go back to the way we used to do it BC (before children) - take off at the last minute to wherever the fancy takes us.  

Having a long block of time away work from April onwards means we can be flexible about dates. Leaving it until the last minute will give us the opportunity to choose the destination, type of holiday and how we get there according to how Steve feels at the time.  

I hope we will be spoilt for choice!

Monday, 18 January 2010

thinking of others

Today's blog is dedicated to the people of Haiti - so much human tragedy and suffering, on such an epic scale.  Our thoughts are with all those experiencing this crisis, including the international medical support, search and rescue teams and humanitarian aid workers on the ground. And not forgetting those coordinating the aid effort from afar, including my friend Angela, who is facing her own personal loss at the same time.

Thinking of others living and dying in such tragic and horrible circumstances puts our own problems into perspective.  It makes us realize how fortunate we are in so many respects, notwithstanding Steve's diagnosis which hangs over us like the proverbial sword of Damocles.  

We all need to help and support each other at times like this. Back to mundane reality next blog...but a philosophical thought for today:

"We cannot live only for ourselves. 
A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects." 

Herman Melville
American novelist

Saturday, 16 January 2010

Seven months on and still going strong :-)

It's been a week of joy and frustration. 

We had become frustrated by the difficulties of getting out and about in the snow. Then, joy of joys, the thaw started yesterday and by this morning, the blanket of snow has all but disappeared here - just the mini-mountains left where it has been cleared and piled up.  We can see green, at last!

Our attempt to re-stock with food yesterday was thwarted by a car battery so dead that not even a jump start from our neighbour's car could persuade it into life.  It took about five hours before assistance eventually arrived, but then, to Steve's relief, the man managed to get enough life into the old battery to get the car to the dealership, where he promptly fitted a new battery free of charge - problem solved!  Sadly, too late to go food shopping, but there was enough in the store cupboard to concoct something basic...

In the meantime, attempts to order contact lenses were frustrated by the lack of an up-to-date prescription. Frustratingly, it seems that the eye test I'd had in August only covered specs. Luckily the optician managed to fit me in short notice, and it was full steam ahead. I will soon be able to see properly again without wearing my glasses, which get in the way when I'm using the camera...

But the best experience of the week was last night.  I called in briefly to see John, the chair of the local allotment association, to tell him the news about the RHS photography competition and to sound him out about thank you gifts for the association and the holder of allotment featured in the winning image. We ended up talking about Steve's diagnosis and I was given much support by the family who have first hand experience of living with cancer.  Some hours and several glasses of wine later, I was chauffeur driven home with two hot, delicious, home-cooked meals, including five portions of vegetables from the allotment to keep us healthy. The generosity, kindness and support we receive from those we know touches us deeply.  Thank you all, so much.

Which brings me to the headline.  It's now seven months to the day since Steve was diagnosed and he's still going strong.  The nausea and tiredness caused by the chemo has all but disappeared. Without that to distract him, he's now more aware of the tingling in his hands and feet - another side effect of the chemo regime - but it's not so bad as to impact on day-to-day activity.  At the risk of tempting fate, there are no indications at present that Leo is misbehaving, which has to be good news.  

Now there's a bit more colour in the world and traveling is easier, I'm hoping that we can be a bit more active physically and socially.  Opportunities to do that are mainly limited to weekends for the time being, as my intense period of work continues more or less full time until the end of March.  However, there is Valentines and our special meal out to look forward to in the meantime, and a week off around Steve's birthday.  Time now to think about how to celebrate those events and to mark Steve's eight months since diagnosis, which will be the next milestone health-wise.

Wednesday, 13 January 2010

A whiter shade of pale

Just when it looked like it would soon be safe to go out, the snow has returned and everything has turned a whiter shade of pale. And it's still snowing....

Here's something to remind you that we live in a green and pleasant land most of the time: 

Checking back, I see that the RHS photo of the year was taken on 26 June 2009, 10 days after Steve's diagnosis - the same day he walked into town to collect his bus pass - and then walked all the way home again.  Talk about stubborn!  

However, that fighting attitude has kept him going for the last eight months or so, and long may it continue to do so. There are times when his defences are weak.  Being stuck indoors most of the time for the last nine days because of the snow has not been easy - too much time on his hands to ponder his fate and get a bit maudlin. 

I think we both need to get out and about and see a bit of colour in the world.  The novelty of a blanket of white covering everything is wearing a bit thin.  Roll on spring!

Tuesday, 12 January 2010

It's official!

This evening's blog has nothing to do with mesothelioma - I'm showing off and sharing the good news!

It's official - I can take a good snap.  I'm RHS Photographer of the Year!

Now that's brightened up the deep mid-winter :-))

Sunday, 10 January 2010

One small step

At last - it's happened!  Steve came downstairs this morning with a bucket in one hand and a packet of anti-nausea tablets in the other, and proceeded to put them away.  That may not sound like much to you, but for me it's a sign that he now feels confident that the side effects of chemo are as good as over.  Another small step in the right direction!

There's a lot you can learn by observing our hall.  Before Christmas it was lined with boxes of wrapping paper and decorations, ready to deck the halls; during the festive season, a changing succession of boots, shoes, coats, hats, scarves and gloves piled up as family and friends came and went, some staying for days, others just visiting for a short while. Now it is the home for our rapidly diminishing supply of salt, the garden spade, boots, gaiters and walking poles. 

The blanket of snow is still deep and crisp in these parts, although more uneven than it was, and a lot more shiny and slippery in places - especially on the footpaths, which have not been gritted. I was grateful for the added support of the walking poles on my journey to and from the station on Friday, when I had to go to a work-related meeting in central London, although I confess to feeling rather conspicuous on the tube....

With more snow forecast and food stocks running low, we bit the bullet yesterday and dug the car out of the cocoon of snow in which it has been embedded since last Tuesday. With help from a neighbour, we managed to push the car into the middle of the road where there is a drivable passage just wide enough to negotiate our way safely on to the the main road system.  At the supermarket, it felt like everyone else had made the same decision - we had to hunt the parking space, squeeze through aisles heaving with trollies, and wait patiently in long queues at the check out. But we are now re-stocked, ready for the next wave of snow which is forecast today.

Sadly, the bad weather meant we had to miss Sue's party, in the depths of the snowbound Oxfordshire countryside, impossible to reach without a 4X4.  So our first meeting with the three french hens is on hold for the time being....I'm beginning to wonder whether we will be able to do our next planned trip to Bristol, where it's been so cold that the harbour has frozen and the ferry service cancelled for fear of breaking the ice and damaging the moored boats.

A special message for Kate and Nick: We are thinking of you both as the due by date draws nearer...cross your legs Kate, and try to hold off given birth until the thaw!  

Wednesday, 6 January 2010

White out

17 cm of the white stuff overnight, and it's still falling as I write....thank goodness chemo is over and we don't have to try to battle our way to hospital through the snow this Tuesday.

Although treatment is over, Steve still has the odd moments of nausea - usually when he needs to eat - and although the emergency bedside bucket was put away for one day, it came out again, rather like having a comfort blanket close at hand, just in case....  

It's over six weeks since the last dose of Velcade was given, and eight weeks exactly since the last dose of Cisplatin. Who would have thought that the side effects of chemotherapy would last so long?  Let's hope things have changed for the better in that respect in eight weeks time, when it will be Steve's birthday.

Now the Christmas decorations are down (though yet to be put away) it really does feel like we are into the new year, rather than the festive season which marks the transition between one year and the next.  With no meso "treatment" planned in the foreseeable future, we feel somewhat apprehensive about leaving Leo to his own devices (and that's an understatement, if truth be told).  The next assessment isn't until March, which seems like a long time to wait to see what he's been up to....hopefully nothing much, in hibernation with a bit of luck!

I have just had my employer's approval to a request for 13 weeks special leave, in addition to the 13 weeks non-available time I already have working 75% fte. So, by the end of March when I should have finished my current development plan work, we'll have a long period of free time to enjoy ourselves.  Keep your fingers crossed that Leo continues to behave himself and doesn't spoil the fun. 

In the meantime, there are other things to look forward to - Sue's party this weekend, when we will finally meet the famous chickens; Valentine's Day in February - time to do something very romantic, I think; the RHS photography competition prize-giving event - more of that another time; an extra-special meal out at a Michelin star inn, a gift from Maralyn, a friend from school days; plus some time off to do celebrate Steve's birthday in early March, may be in Cornwall. 

Arrangements are in place, or visits pencilled in, to see other friends in the coming weeks and months, and there will be trips to see Jack and family in Bristol and Katie and George in Yorkshire....always assuming the snow and ice have disappeared by then!  

Take care out there, everyone...

Sunday, 3 January 2010

Good start to the New Year

We were delighted that so many of our friends, neighbours (and ex-neighbours!) were able to join us last night to welcome in the new year and celebrate the fact that Steve is still very much alive and kicking, some six and a half months after mesothelioma diagnosis last June.  It was wonderful to meet up with all of you, especially those we have not seen since New Year's Eve 2008 - still a bit of a blur- if not longer!  Great also to see old friends bumping into each other after long separations and new links being forged.  Thank you all for the wine and for the unexpected gifts, which we have only just got round to looking at properly. So generous and very much appreciated.

Steve is feeling a little fragile today, but that's nothing to do with Leo.  It's as a result of staying up late talking with Katie and George and everyone else had left, not going to bed until 2.30 am, and drinking rather more wine than usual.....

.......I think it will be an early night tonight

But before then, a welcome to the world to Balthazar, born in Bali on 30 December 2009 to proud parents Ollie and Anya.  Much love to you and all the family, including grandparents Ian and Ruth and (now auntie) Emily.  We look forward to following your progress on your website!

Friday, 1 January 2010

goodbye 2009 - hello 2010

This time last year we were in blissful ignorance of what life had in store for us in 2009.  I won't pretend that the last eight months have been easy.  However, somehow we have battled through it, supported and buoyed up by the love, care and good wishes of family, friends and neighbours. Thank you, thank you, thank you.

Who knows what the next 12 months will bring?  There will be ups and downs for sure, as always. However, we'll aim to make the most of life, enjoy the things that are important to us, try to keep in touch with people and to maintain a positive attitude.  

Yesterday we picked up the forms to renew Steve's passport which expires shortly. Now that's what I call positive thinking! Jon and Sally helped us see out the last few hours of 2009 in style with a splendid meal. We stayed up to see in the New Year and the arrival of our first footers - two of Katie's friends who stayed over.  We look forward to welcoming those who can make it here tomorrow night and will raise a glass or two to absent friends. We will catch up with you in 2010 - and that's a promise!

The sun is shining brightly as I write, so time to blow the cobwebs away with a walk I think, before thinking about preparations for tomorrow and plans for the coming months.  

May you all have a happy and healthy New Year :-)  

Happy anniversary, Andrew and Jan - enjoy your trip to The Globe!