temptations, twinges and a baby step forward

Last Saturday was supposed to be a mixture of culture and socializing.  However, we succumbed to the temptation of lingering over a long lunch at the Ashmolean Museum with Anne, Colin and Ruth and didn't leave ourselves enough time to do the culture bit before leaving to prepare the evening meal for everyone at our house.  No matter. It was a good excuse to pay a return visit this weekend with our son Jack, back in Oxford for a flying visit to various galleries, and to return to the Ashmolean for tea this time!


In between the two Saturdays, Steve has noticed some twinges on his right side in the area around the "ports" where the chest drain and camera were inserted for the pleural effusion operation, back in June 2009. Perhaps twinges is too strong a word. It's more a matter of being aware of his chest, whereas in the normal course of events it's not something he gives much thought to. One of the problems with mesothelioma is that you think that every twinge, however small, may be the start of a flare up; that thought alone can magnify the significance of the feeling and enlarge it out of all proportion.  


However, as the week has worn on, the chest awareness has worn off.  So may be the twinge was a bit of RSI brought on by all the work he's been doing on the computer, updating the Oxford Studio website.  Please don't bother looking now!  The update is still a work in progress designed to move away from the emphasis on botanical photography and reflect a wider range of work due to be exhibited in March and featured in a photographic magazine due to be published around the same time.  More of that exciting news in a future post!  


Not long ago, I mentioned how our "planning" horizons have shrunk - we tend not to make commitments beyond the date of Steve's next assessment, just in case....However, we have been tempted to look a bit further ahead recently, making arrangements for social get-togethers in late March/early April, a few weeks after Steve's next hospital assessment.  And we have both applied for Associate level RPS distinctions, with a photographic assessment in mid-June.  It feels just a little bit like we are tempting fate, but to do otherwise would be so limiting.


The baby step referred to in the title of today's blog isn't a new member of the Wride clan!  It relates to Steve's damages claim. The case management conference took place in court on Friday. Steve's presence was not required, so we had to wait to find out what happened. A short e-mail from Steve's solicitor advises that the presiding judge has reserved the case to deal with himself. That sounds promising, even though we don't know the significance.... The judge has also allowed "inspection".  I assume that means he has agreed our team's request to test further samples from the building where we think Steve was exposed to asbestos.  However, it might be a legal term with a completely different meaning!  All will become clear, I hope, when we receive a full note of "the directions" from our barrister, which the solicitor will pass on when available.  


Last but not least, if you yourself have children, are a teacher or a member of support staff in a UK school (or know someone who is), you might like to check out the Asbestos in Schools website (link on the right).  The site is a mine of useful information, research, reports and intelligent commentary on Government policy relating to the management of asbestos in UK schools. Such information is a powerful tool, which I truly hope you will never need to use.

comings and goings

It's been a busy week, one way or another.  


I spent Monday working in London, familiarizing myself with places I'll be discussing in hearings in a few weeks time.  


Wednesday evening we went out for a splendid meal with friends and said a fond farewell (well, more of an au revoir I hope!) to Ian who is traveling back to Vietnam today.  He left us with a tempting invitation to go sailing in Indonesia latter in the year........


Yesterday, we were in Bristol, me for a work-related meeting, Steve to visit his mum, pay a return trip to the SS Great Britain to take photos in the wonderful light and to collect some prints from the Royal Photographic Society offices in Bath.


I think yesterday's traveling has caught up with Steve today - he's had a nap this afternoon and is feeling a bit flat (but that's probably frustration because he STILL hasn't finished his accounts, in spite of being almost there.....) Hopefully, tomorrow will lift him up again, with a day of socializing and culture.  


Our friends Anne and Colin are making a return visit to Oxford to see some more of the Ashmolean Museum in the morning and we'll join them a nostalgic visit to the University and Pitt Rivers Museums in the afternoon.  The socializing will be around meal times, no doubt!  


Our barrister will be coming to Oxford next Friday to represent Steve at the case management meeting about his damages claim. We are waiting to hear whether or not Steve's presence will be required.  I'm not sure what is going to happen at the meeting, other than that our team will be asking for leave to take samples from the former Polytechnic (now University) building where Steve was involved in demolition works as an architectural student back in the early 70s. 


By this time next week, we will know the Judge's decision on that matter, if nothing else.  I still find it hard to understand why the University will not cooperate with the request for two samples to be tested, given that it denies the presence of asbestos.  Still, I assume it's par for the course in cases like this. 


That said, our experience to date is nothing like the struggle in Australia between the firm of James Hardie and the many victims of asbestos-related disease who worked for the company.  If you have a few minutes to spare, watch the video "Running up that hill - Tribute to Bernie Banton" Bernie led and won the fight for compensation.  He was born in the year before Steve.  He died in 2007, just 103 days after being diagnosed with peritoneal mesothelioma.  There is a link to the video on the right under WATCH.  Please do.

19 months on........

A few days ago Steve had a call from Charlie, one of the nurses who looked after him when he was on the Velcade drug trial.  She's now one of the team of specialist Macmillan nurses who keep in contact with him between hospital assessments to see how he's doing.


When Charlie asked how things were, Steve replied that all is OK. He's not breathless or in pain and is, for all intents and purposes, leading a normal life. Had it not been for the diagnosis of mesothelioma in June 2009, he wouldn't be physically aware of what's been happening inside his body since he was exposed to asbestos many years ago. And that's how things stand today, 19 months since diagnosis.  


Following the stories of others in his position, we are both acknowledge how very fortunate he is to be alive and enjoying life, not in pain or physically compromised to the degree that it affects day-to-day activities.  However, the physical side of things is only part of the story....


Had it not been for the mesothelioma diagnosis, at this time of the year we would normally be planning our summer holiday and thinking about how to celebrate Steve's birthday in March and our wedding anniversary and Katie's birthday in May. We'd be developing the Oxford Studio business, perhaps working on designs for another stand at Chelsea Flower Show, running photography courses, or looking at ways to exploit Steve's graphic design skills.  As the tenth year of working in my current job approaches, I'd be thinking about how my career might develop over the next few years.  We would probably be looking further into the future, beyond retirement, now we are both in our glorious 60s......


A diagnosis of mesothelioma robs you of that long term vision and shared hopes for the distant future.  For us, horizons tend shrink to three-monthly assessment periods. Any plans beyond the next scheduled visit to the hospital are always subject to the proviso "assuming Steve is still OK...." Every cough, every ache, every sign of fatigue is a reality check - is Leo stirring?  In the weeks approaching the next assessment, stress and anxiety levels tend to rise and I find myself thinking, "what if....."  


However, Steve's mesothelioma diagnosis has made us appreciate all the more so the things that mean a lot to us, and how important it is to make the most of this time. So we continue to do so - in between getting on with the less interesting, but nevertheless necessary, things that are essential to keep life ticking over! 


There's a busy week ahead with work-related trips to London and Bristol, enlivened by the possibility of some social gatherings on one or two evenings and a definite plans for a get together with friends next weekend.  In the meantime, the ironing basket is overflowing, but at least my tax return has been done....Now if Steve can just get his accounts to balance, we'll be two happy bunnies :-))

Raising awareness of mesothelioma by sharing experiences

A few days ago I had an e-mail from Mavis who was diagnosed with mesothelioma around the same time as Steve and, like him, is still fighting the disease and making the most of life. Mavis's blog (and her book based on the blog) is followed and read by the TUC and many others around the world, so we were honoured when she dedicated her entry of 9 January to Steve and Doing Something Positive.

I am taking this opportunity to raise awareness of mesothelioma by dedicating today's blog to Jan, who has been living with the symptoms of mesothelioma since the late 1990s but wasn't diagnosed until 2004.  Jan is another inspiring meso warrior - you can read her story by following the link on the right under "We are not alone"

Last Saturday Jan posted "A letter to meso" on her blog - a very honest and moving account of how it feels to live with the disease.  I have reproduced most of it here as her own words are far more effective than any summary I could attempt.  Please read on, but take a deep breath first.....

Dear friend 

How long have I known you intimately for now, 6 years coming up 7?  We have certainly seen some battles you and I.  You have taken me to near distinction and others have brought me back again.  Our lives have affected others as well as each others and all the time its a battle of nerves, who can outwit the other. 

Over these years, more recently the last 4 I have come into contact with some wonderful people because of you, and I have also lost some wonderful people to you.  You have brought destruction and despair, pain and unhappiness into so many lives and yet you are still here, still residing where you aren't wanted.

The effect you have on life is so hard for others to comprehend, you are hidden away with no outwardly signs, you slyly and slowly sneak into one's life and by the time you are noticed you have already caused unwanted problems.   I,  for one, have been fighting with you for 10 full years, albeit I could only put a name to you after 4 of those years.  The pain you unleashed in the early days was bad but at least you gave me breaks.  Over the last 6 years you have been unrelenting with unleashing pain;  you find ways of making my body hurt.  Even in sleep you still hold your power of pain over me.

Some of those you have touched have been spared with pain but suffer in so other many terrible ways.  You leave no one untouched when you become part of some one's life. 

You inspire some wonderful doctors who want to discover your secrets and rid us of your presence and then there are some who ignore your very existence or find that dealing with you to troublesome and prefer not to deal with those you have come into contact with.  Oh yes, I have met both sides and so have many others, but you don't understand the determination of the human race and we will beat you, one day you will no longer exist......

...I hope that this New Year will bring compassion into your being as just the mention of your name brings fear to all those that hear it.  Today more people understand the name you are know by Mesothelioma; more are aware of your hiding place and, more importantly,  people are trying to find your secrets of life so they can eradicate you from our lives. 

For me I guess I'll have to struggle on, but be aware you are never out of my sight and I will always try and outwit you.  You have worn me down, made me old before my time, tried taking away my life.  Even today, as I am tired and weary from our fights and from the pain, I will not let you win.

I am watching you.

Jan

the Bounce Back recipe

• Take two people who have been marinading in a post-Christmas dip for several days
• Refresh with good wishes and messages of support from friends in places near and far
• Transfer carefully to a party in the deepest countryside
• Mix with a generous amount of wine, excellent food and plenty of interesting people
• Stir well until all the grumpy bits have disappeared
• Transport back home to simmer gently over a low heat overnight
• Add bright blue sky and liven up with wall-to-wall sunshine the following day
• Finish off with afternoon tea at one of our favourite places

The perfect recipe for helping us bounce back after our post-Christmas dip.

Thanks for all the support!

Thanks to Sue for hosting a wonderful party!

Thanks to Stella and Roger for taking us there and getting us back home again safely, without having to worry about drinking and driving!

I feel like we are back on the positive track again :-)

Happy Christmas (again!) and getting through the post-Christmas dip

No - I haven't gone mad!  In some parts of the world (including a remote valley in Wales, reputedly) where they are still operating on the Julian calendar today is Christmas Day!  So festive greetings to anyone out there celebrating (again).


Our house is no longer looking festive. The naked tree is in the front garden waiting to be recycled.  The decorations are back in their boxes waiting to be put away under the eaves in the loft (can't face that yet!). The cards have already been collected by the recycling van, apart from the special hand made ones which we always keep because of the love, thought and effort that has gone into them. The downside of this change is that the house is looking rather stark compared to a few days ago. The upside is that it is less cluttered and therefore an incentive to get more organized ready for the year ahead and (quite literally) to get rid of the cobwebs that are all the more obvious now there are no decorations to distract the eye!


Looking back on the blog, it was around this time last year that Steve finally put away both his anti-nausea tablets and the sick bucket which had been living beside the bed during the months when he was undergoing chemo. The snow was deep, the roads were treacherous and as a result we missed Sue's party and our first chance to meet her three french hens.  All being well, we will be introduced at last this weekend!  


Steve has been feeling tired this last week and experiencing anxiety dreams and night sweats. I suspect the time of the year - the excitement of Christmas is over but the spring still a long way off - has something to do with his mood, likewise the long hours of darkness and gloomy days. Plus, I've had my head down since last weekend in an effort to meet a work deadline and, as a result, he has been left more than usual to his own devices.  


However, all the effort paid off today!  With the deadline met, we can relax together tonight and the next few weeks won't be quite so pressured.  I hope that will help get him back into a more positive frame of mind before the next big deadline is upon me.  It's at times like this, I know I've made the right decision to volunteer for "early exit" from work. We are both SO looking forward to spring!  I just hope that Leo (Steve's name for his mesothelioma) slumbers on and doesn't spoil the enjoyment on the horizon! 


Back in the here and now, we must catch up with some thank you notes/e-mails and bite the bullet of filling in our tax returns by the end of the month. To help us along there are lots of Christmas present books to read and games to play; still some Christmas goodies to devour, and a new camera lens to experiment with!  Steve has already started thinking about plans for later in the year, which I take as a good sign....


Last but not least, my thanks to those of you who lit candles in honour of Steve and all the other mesothelioma warriors - it was truly heart-warming!

the family gathering at last - and time for another candle

A couple of weeks late and smaller than planned, we finally had our family festive gathering on Sunday in Bristol, enjoying a bring-and-share meal and belatedly opening presents.  Esme, the youngest member of the wider Wride clan kept everyone entertained while we caught up with each others news and talked about future plans. Such a pity than not everyone in the family could make it this time round - still we raised our glasses to those absent and saluted the New Year for everyone!  I hope so much we will all be able to get together again in December for the 2011 family festive gathering.


All over the world today, people will be taking part in another tradition which is new to us - lighting candles in honour of mesothelioma victims.  Those who lost the battle were honoured on 28 December.  Today, the candles are in honour of those who are still alive and fighting the disease. Steve's name is on the 2010 warriors list.  The event is organized by the ADAO to symbolize that the flame of hope and courage burns brightly.  By lighting candles between 7:00 pm and 8:00 pm local time today, with membership spread throughout the world, there should be a candle alight for the entire 24 hours. 


If you would like to show your support for Steve and other mesothelioma warriors, please light four virtual candles this evening - to remind us of love; renew our hope, give us courage and strengthen our pledge to continue fighting the disease.  You can access the "Light a Candle Community" via the link top right under "Show your support".  Thank you.  


  

goodbye 2010 hello 2011

This time last year I wrote:

"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"

Looking back at 2010, I think we did just that.  


The cycle of "downs" closely followed the build-up to Steve's quarterly assessments, which is always a stressful and worrying time.  However, he was fortunate in 2010.  With no mesothelioma progression over the whole 12 months, each "down" on the emotional roller coaster was closely followed by an "up".  Others have been less fortunate. Debbie's blog today (mesothelioma and me - link top right ) lists the names of 21 mesothelioma warriors, mainly from the Facebook group who have lost their fight against this awful disease over the last year.  To that list we can add Andy, a friend of a friend here in Oxford, who died of mesothelioma in August. So many lives lost and families and friends devastated needlessly, if only those responsible had taken their health and safety duties seriously.


But it hasn't all been bad news.  Some whose stories we have followed have had tumours shrink following treatment (Mavis and Anita) whilst others, including Debbie and Andrew, have had some progression but are still leading relatively normal lives and inspiring others to do likewise. You can follow their stories via the links top right.  You can also sponsor Andrew who cycled 600 km between Bangkok and Phuket shortly after surgery to raise funds for the charitable trust Mesothelioma UK (link under fund raising on the right).


We have certainly made the most of life in 2010.  I was given a period of unpaid special leave from work and we have been out and about visiting places and doing things for the first time.  We have also caught up with many friends over the last 12 months, which has been wonderful.  The support we have received from you has been much appreciated, both in the flesh and online.  Thank you all so much.


A special thanks to Elizabeth and Roger and Jon and Sally who helped us see in the New Year in style last night, with good food and wine, and even better company!  We just had enough energy left in the early hours of this morning to each light a chinese lantern and send it off into the sky with our wishes for 2011.  We were not the only ones with similar thoughts.  The sky over the city was dotted with small lights carrying hopes into the new year.  May all your dreams and wishes come true!


So here we are in 2011, still not knowing what the future holds this year for Steve but determined to make the most of life.  If all goes to plan, I shall be retiring in mid-March - the day after Steve's next assessment, so we are hoping for a double celebration!  A couple of weeks before then, Steve will have his millionth birthday (in binary numbers - work it out!) and some six weeks later, all being well, we shall be celebrating our 39th wedding anniversary.  There are other things pencilled in, but as usual, we'll wait to firm up these plans nearer the time!    


We wish each and everyone of you much happiness and fulfillment in 2011 and look forward to seeing you in the months that lie ahead!


Last but not least, our love and congratulations to Andrew and Jan who celebrated their 39th wedding anniversary today!