Friday 25 February 2011

the power of positive; a thank you and a dedication

I recently read an article on how overwhelming it can be for people diagnosed with mesothelioma to deal with a poor prognosis when, on the one hand, you are fighting to improve your survival and, on the other hand, being forced to face your mortality. 


The article goes on to refer to various studies which have demonstrated the power of the mind-body connection where positive thinking results in an improvement to a patient's health.  According to a landmark study in 2007 by the Institute of Medicine, social and emotional support are just as important as medical care in the face of a cancer diagnosis.


I'm not surprised by the findings of these studies, just surprised that it takes a "landmark study" to discover what any one diagnosed with mesothelioma will tell you from experience - whether it's Graham Sherlock-Brown's PETAL philosophy, the Meso Warriors support group on Facebook, people like me who write blogs to raise awareness or major organisations like Mesothelioma UK, Macmillan or the ADAO whose approach is to look at whole person, not just the disease.


So today's blog is an opportunity to say thank you to all those who help us and each other by trying to stay positive and providing social and emotional support whenever and wherever they can.  It is also dedicated to all those who are in special need of such support at this time, in particular Jan and Ronny who are both going through personal battles at present in their long term wars on mesothelioma.

Thursday 24 February 2011

committed

The deed is done.  


At a time when so many are facing redundancy or desperately job-hunting, I have volunteered to leave a well-paid, professionally satisfying job that has taken me to places I've never heard of, let alone visited, before.  I have signed on the dotted line and am now committed.  Or perhaps I should be committed...am I mad?


The answer is a resounding "NO"  


Since Steve was diagnosed with mesothelioma, life's priorities have changed.  When you are live with a time bomb that could explode at any moment, time itself is more precious than anything else. I still feel gutted that I wasn't there when Steve heard the devastating news back in June 2009 that he had an incurable cancer.  Why wasn't I there? I had to be in London for work reasons.  


In my job, it's not possible to delegate once past the point of no return.  If you are committed to being at a certain place at a certain time, then you turn up unless too ill to get out of bed, or travel is disrupted by something completely outside your control.  Details of your availability are requested six months in advance; work programmes are fixed at least six weeks in advance; the main area of work that I specialize in requires a commitment on and off over a period of 20 weeks or so.  That sort of working pattern is simply not compatible when you want to be with a loved one who has mesothelioma.  


So I have accepted an "early exit" offer and 28 March will be the end of that particular working era for me. I can look forward to spending more time with Steve.  I won't have to abandon him at critical moments.  We can make last minute, spur-of-the-moment decisions to do things, go places, or simply relax.  We can take off with our cameras when the light is good.  We can go on life's unpredictable journey together, without me having to worry about how to be in two places at once, or letting someone down.  


All sorts of exciting possibilities open up from the end of next month.  We may even have time to do some spring cleaning in between all the other things on offer!  


Between now and then, there's a mountain to climb work-wise; an exhibition to prepare ready for hanging.  Steve's birthday is next week; Katie is coming home for the weekend tomorrow to kick start the celebrations - Steve's special day and the start of her new job next week.  There are various social events to look forward to, one of which is tonight...so time to finish today's blog and get ready!





Friday 18 February 2011

the significance of dates

Time seems to pass more quickly as you get older. However, since Steve was diagnosed with mesothelioma in June 2009, we have become even more aware of the passage of time and the significance of dates.


Today is 18 February, which means it is 20 months and 2 days since diagnosis.  Steve has been able to celebrate yet another Valentine's Day.  This year, we marked the date with a meal out in Wimbledon, where I have been based for much of the time over the last two weeks.  As far as we can tell, Steve's physical condition has not changed in the four weeks since the last blog review. People often remark how well he is looking, which is true. They almost seem to forget that he is living with a time bomb inside him.  He still wakes up in the night from time to time, aware of how vulnerable he is and that his health could deteriorate at any time without warning.  Every little twinge is like an alarm bell ringing.......


Today is 18 February, which means it is now one month minus one day before Steve's next scheduled hospital assessment.  An X-ray will reveal any indication of disease progression, in which case he will have the full scan treatment to establish exactly what's happening inside.  In either event, the X-ray/scan will be followed by the nerve wracking time waiting to talk to the oncologist and find out the news.  Some meso warriors have to wait a whole month for the results of a scan.  How do they do it? The next four weeks or so will become increasing stressful as the date of the assessment approaches.  The thought of having to wait yet another month after that for the results is horrifying... 


Today is 18 February, which means its less than two weeks to Steve's next birthday when he will be 1 million years old in binary numbers!  I wish I could give him a cure for mesothelioma as a birthday present.  In reality, I have no idea what to give him to mark this auspicious occasion - we still have gifts to each other stacked up from previous special occasions waiting to be taken - hot air balloon rides for both of us, a special driving experience for Steve, a special boat trip for me.  I hope that soon we'll be able to make the time to enjoy them.  The phrase "when I retire" is cropping up in our conversations with increasing regularity.....


Today is 18 February, which (until this morning) meant it would be exactly one month until I am due to retire.  I'm now told that the date of my last day of service has been pushed back to 28 March to give me a bit more leeway to finish the report I'm due to start working on in ernest next week.  Very welcome news in some respects as the extra week takes a bit of pressure off a deadline which which would be very difficult to meet given other commitments. However, it's also frustrating as it pushes back the end date I had firmly fixed in my mind. I saw the early release compensation offer for the first time this morning and it's not what I was expecting - whether I get a satisfactory answer to my queries before the decision deadline early next week remains to be seen.  I do hope so.


Today is 18 February, which means it's less than three weeks until we're due to hang the exhibition.  There's lots of printing, framing, mounting, stretching and varnishing to do before then, publicity to organize and private view invitations to be sent out at the start of next week.....


Today is 18 February, which means its ten weeks and two days to our 39th wedding anniversary.... Oh dear, I seem to be getting a bit ahead of myself. I don't want to wish away our precious time together.  Need to get back to the here and now, take each day as it comes and make the most of it.  After all, a date is just a date, is just a date.  Life is for living not watching the clock or being enslaved by the calender.  Let's enjoy every day, as much as we can....  



Monday 14 February 2011

for my valentine


Who knows how long I've loved you?
You know I love you still
I will love you all your lifetime
If you want me to - I will

Love you forever and forever
Love you with all my heart
Love you whenever we're together
Love you when we're apart

I never want to loose you
Your love song fills my heart
Sing it loud so I can hear you
Make it easy to be near you
For the things you do endear you to me
Yes, you know I will....
I will




Inspired by and based on The Beatles "I will"




Sunday 13 February 2011

arrivals and departures

Our house been a bit like the arrivals and departures lounge at a transport interchange this last week. 


Katie arrived late last Sunday and left on Thursday, having benefitted from a few days of personal space and time. I left for London on Tuesday and returned Friday evening, having held two hearing sessions and pounded the streets of south west London looking at sites in between. 


Steve has been providing a taxi service for the ladies in his life, collecting daughter and heavy suitcase from the station and taking her back again four days later, and driving wife (and a small forest-worth of documents) to the hotel in Wimbledon, on to the Civic Centre the next morning, and doing the return round trip two days later. No wonder we both feel a little disorientated.......


As we'll be doing a repeat of the London round trip next week, we're trying to cram a lot into this weekend - catching up on post, e-mails and other news; swapping out paperwork for next week's hearings; re-packing the case with clean clothes and supplies.  There are several birthdays coming up - some cards are posted already, the rest will be sent tomorrow.  We are amazed to think that our great niece Esme is almost a year old - the last twelve months have flown by!


It's almost 20 months since Steve was diagnosed with mesothelioma, but we'll put together our thoughts on that subject next weekend, by which time (we hope) the pace of life will be slightly less hectic.  However, I can share some other good news which is now in the public domain - a selection of my images will be featured in Issue 9 of Fotoblur Magazine, which is due to be published late February/early March. If you are curious, you can find out a little more by going to http://www.fotoblur.com/blog/42


Now it's time to tick off some more things on the "to do" list before we're off on our travels again......Last but not least, happy birthdays to Peter and Paula, Kate and Esme.  Hope to see you all soon!



Saturday 5 February 2011

when will they ever learn?

Steve is a happy bunny because England won the first of the Six Nations rugby matches last night.


I am a happy bunny because I have just finished the words for a photography magazine feature and have been told that it will include eight of my images.


We are both very angry bunnies about a request for a loan guarantee for 58 million dollars from the province of Quebec, to revitalize the Jeffrey asbestos mine in the town of Asbestos, Canada, and to sell asbestos to countries like India, Pakistan and Vietnam where the approach to workplace safety is less than ideal.  


In a civilized world where an increasing number of countries are banning the use of asbestos, how on earth can anyone in their right mind want to pursue this course of action?  If the Canadian Government has that sort of money going spare it ought to be be plowed into removing asbestos from the country's buildings, supporting those struck down with asbestos-related diseases through no fault of their own and invested into research to find a cure for mesothelioma, which has yet to peak in terms of the numbers of people diagnosed.  


Arguments about the type of asbestos mined simply don't hold water.  There is no known safe dose when it comes to inhaling or ingesting asbestos, regardless of whether its blue (crocidolite), brown (armosite) or white (chrysotile).  


When will they ever learn?


To find out more follow the link on the right to Asbestos Jeffrey Mine, Canada under Raising Awareness

Friday 4 February 2011

rabbits and bees

Happy New Year!  I started today's post very late on the first day of the Chinese Year of the Rabbit and I hope it's a good one for you all.


We are more like busy bees than rabbits at the moment which is why tonight's blog is concise to say the least!


Steve has been updating the Oxford Studio website, printing pictures and running the house - shopping, housework, sorting out the insurance.  He's had yet another version of his witness statement for the damages court case to check and sign.  I've lost track of which version this is!


I've been working flat out preparing for next week's hearings in London, and squeezing in a bit of preparation for the forthcoming exhibition, words for the photography magazine feature and trying to stay calm....


It's gone midnight as I've been finishing today's brief post - how quickly time flies.  This unusually intense pace of life is set to continue for the next few weeks, so don't panic if there are long gaps in the blog - we are just busy, busy, busy....