Thursday 20 June 2013

today, our minds are in other places, with other people....

Today, our minds have been in other places, with other people...

....Today was the funeral of meso warrior Debbie.  Our thoughts have been in Plymouth with Debbie's family, friends and the meso community who went to say their goodbyes and celebrate the life of this woman who inspired, supported and encouraged others fighting the disease, and raised awareness of mesothelioma and the dangers of asbestos.  

Debbie loved dragonflies. Whenever we see a dragonfly in future, we will think of you Debbie.  Thank you for being there for us and the meso warriors xxx

....Today, our thoughts have been with Janelle's family and friends in Rushville, Indiana.  Janelle lost her battle with mesothelioma last night.  She was only 37 years old - another life snatched away needlessly....Our hearts go out to her husband and young son xxx

....Today, out thoughts have been in Kent, with meso warrior Mavis and her husband Ray.  Ray had a heart operation this morning, but is now back on the ward recovering.  Mavis is due to have chemo tomorrow. Sending you both lots of love and good wishes for a speedy recovery so that you can enjoy getting out and about again soon xxx

Tomorrow marks the beginning of another adventure for us, so don't be worried if there is another intermission between blog posts.  We are just out there having fun and making the most of life!   :-)

Sunday 16 June 2013

Four years on....

16 June may not mean much to you.  However, for us it has a special significance.  It's when Steve found out he had mesothelioma.  

That was in 2009.

Today it's 2013.

Four years on and he's still going (very) strong!

With so much sad news recently for the meso warriors, their families and friends, I hope very much that this anniversary will put a smile on your face and that you will join us in a virtual drink to celebrate Steve being a four year survivor! 

Cheers, everyone :-) 

Saturday 15 June 2013

a week in the shadows

I was originally going to write that this has been a "challenging" week, but in truth it's been gut wrenching...

The unexpected news that Debbie had lost her battle with mesothelioma last weekend cast a long, deep shadow over us.  This was swiftly followed by news that two more meso warriors, Helen and Colin, had died in the following days and others are clinging to life by the most slender threads. The shadows seem to have become longer and deeper as the week progressed.  Yet another meso death was announced this morning by Lou in Australia.  I can't remember such a week for sad news on the meso front....

Not surprisingly, the mesothelioma community on Facebook has been knocked sideways. However, while we may be down, we are certainly not out.  We take comfort and gather strength from each other through these difficult times, in the same way that we share and celebrate each others good news. We wouldn't have shadow if it wasn't for light.  I'm hoping that next week the balance will be redressed - at least a little - with more light and good news.  

We will certainly have something to celebrate tomorrow....please come back to celebrate with us!

In the meantime, we have soldiered on but it has been a bit of an uphill struggle. We have been arranging our next adventure, something I usually find exciting.  However, this time things haven't gone smoothly.  Accommodation we hoped to book has not been available; I have made silly mistakes about dates (my mind on other things) which have taken time and energy to resolve.  

Accommodation and rail tickets eventually sorted, it was Steve's turn to be frustrated by car hire arrangements - to our surprise, the rental companies charge the equivalent of two days car hire if you pick up and drop off the car in different locations, even though in our case the pick up/drop off points are only 100 km/just over an hour apart in travel time.  Too late now to unpick all the other arrangements; we will know better in future....

Thankfully, not everything has been so difficult or frustrating.  Our business accounts and report were signed off without a hitch and my tax return has been sorted. Thank you Victoria!  A tutorial for one of my images has been published in the 1X book Photographic Visions and two more have been requested and now written for the next tutorial book.  

Shortlisted images in the Best Shots Photographic Competition (where I was a 1st round judge) have been reviewed and the winners selected by the 2nd round judges. I've written a few sentences about four of the prize winning images ready for the big announcement and exhibition launch in July, which we hope to attend.

We are now enjoying a weekend with daughter Katie visiting, talking long into the night over a bottle or two of wine.  May this be the start of the good times returning....

....A big group hug to all the meso warriors out there, their carers, family and friends x

Sunday 9 June 2013

A tribute to Debbie

It is with a heavy heart that I dedicate today's blog to Debbie Brewer. 

Debbie died last night in her sleep some seven years after being diagnosed with mesothelioma in October 2006, told that she had 6-9 months to live and that fighting this aggressive cancer was fruitless.  

Debbie decided there and then that she was not prepared to lay down and die.  Since that time, she has lived and full and eventful life.  She has not been afraid to try new approaches to treating this disease as well as conventional treatment.  She been an inspiration to other people around the world who have been given the same devastating diagnosis and has provided practical and emotional support to them and their loved ones.  

We contacted Debbie just a few days after Steve was diagnosed with mesothelioma in June 2009 and she responded within hours, offering her support and giving us her phone numbers in case we wanted to talk.  She has been with us every step of the way since then.  

We will miss you so much Debbie.  You will always be in our hearts.  Thank you for being there for us, and for the worldwide meso community.  

We send our love and big hugs to your close friends and family, especially your children Kieran, Siobhan and Rich.  

Debbie, you have lit a candle in memory of so many meso warriors who have lost their lives to this disease.  With tears in my eyes, I light one for you now. Rest in peace.  No more pain.  


Thursday 6 June 2013

Assessment Day

Steve's last few hospital assessment appointments have been at lunchtime.  By that time of day, all the parking spaces have been taken and there is usually a long wait in the clinic to see the doctor.  

Today was different.  A 9 am appointment in the clinic, preceded by an X-ray, so a relatively early start for us this morning....

Lots of parking spaces; no one waiting in X-ray; called into the clinic before we had the opportunity to sit down to read an out of date magazine!  Not long to wait for the doctor in the consulting room.  Dr T has a new registrar who we met for the first time today (an indication of how long we have been coming to this clinic...registrars come and go and Steve is still here.....)

This doctor had clearly read Steve's notes, knew he'd been on the Velcade drug trial back in 2009 and had finished second line chemo with Alimta and carboplatin earlier this year, although he seemed to think it was in January rather than February which made me wonder whether he was fully up to speed, or whether the notes from Steve's last assessment on 7 March had reached the file......  

After the usual preliminaries, he cut to the chase pretty quickly and it's good news!  The X-ray showed no sign of any disease progression, so condition stable.  Everything fine on the physical examination.  Steve has put on weight since the last time it was recorded...helped by all that Italian food and wine, I suspect!

He then asked what scan regime Steve was on - the first time we have been asked this question.  So we told him that unlike other meso patients elsewhere in the country, Steve didn't have regular scans.  That only happened during chemo (to assess whether there was a response to treatment) or when the X-ray indicated disease progression.  He seemed a little surprised by the answer and said he thought it would be a good idea to have a regular scan - perhaps once every six months (if I recall correctly).  

He also remarked that Steve was unusual given his good condition nearly four years since diagnosis and was pleased that there had been no re-occurrence of fluid build up in the lung lining following the pleurodesis operation in 2009.  

Assuming Dr T the consultant agrees to the scan, the registrar would arrange for Steve to have one before his next appointment in three months time.  

So - here we are - looking forward to summer and making plans for the next three months.  Raise a glass with us this evening to celebrate!

Wednesday 5 June 2013

up, up and away

We have been trying since August 2011 and have lost count of how many failed attempts there have been along the way.....but finally....on Sunday evening, we managed to do it....

If you haven't guessed already, the hot air balloon took off from Bristol with us in it, at long last!  Mind you, because of the wind direction the pilot had to switch launch sites, otherwise we would have ended up at Bristol airport.  So having travelled to the original launch venue, all the passengers were taken in a mini van to another site, south of Bristol.

Once there, the crew managed to get the balloon inflated at the second attempt (gusts of wind having closed the mouth of the "envelope" first time round making it impossible to light the burners which heat up the air inside without setting the fabric on fire!)

Once airborne, the gusts of wind dropped to a gentle breeze as we drifted away from Bristol over the countryside to the Chew Valley, in the Mendip Hills AONB, Somerset.  

Because of the launch site change and failed first attempt to inflate the balloon, we didn't get as long in the air as we would have in other circumstances.  But it was lovely, floating over the farmland, watching the sheep and cattle below, spotting landmarks and waving back to people looking up....

....As the sun sank slowly in the west, the pilot started looking for a launch site.  However, there are extensive areas of woodland in that area, the very large Chew Magna Lake and a lot of fields with crops in when pilots prefer not to land unless it's an emergency.  He was also on the look out for a field with a gate next to a road so that the retrieve vehicle could get access to take the balloon, basket, pilot and passengers away at the end of the evening.

With the sun getting close to the horizon and not a lot of choice, the pilot headed for a relatively small triangular field, bounded by hedgerows and trees, with a VERY large tree in the middle and poles with wires along one edge. Hmmmmm - not an easy landing place!  

However, with passengers braced in the landing position, the pilot deliberately skimmed the top of one tree in the hedgerow to slow us down then deflated the balloon quickly enough to get the basket safely on the ground and allow two passengers to jump out, catch the main rope and pull the balloon envelope away from the big tree and into the open field, where there was just enough space for it to deflate full length.

If you have ever read about pleasure hot air balloon flights, you will know that most companies celebrate a happy landing with champagne.  What they might not tell you is that you have to do a bit of work first - getting the air out of the balloon envelope by sitting on it, then helping to roll it into a long sausage before winding it back into a large bag to be hauled back on to the retrieve vehicle.

It was almost dark as we drank our glass of fizz by torchlight before being given our certificates to say that we had flown, and driven back to the original launch site where everyone had parked their cars.  And it was even later by the time we returned to son Jack's house where we were spending the night before traveling back to Oxford on Monday.  However, we finally made long last.

Not quite the mass ascent at the Bristol Balloon Fiesta which we had originally booked back in 2011, but wonderful anyway!

Some time in Bristol meant that we could also visit Steve's mum, spend some time with son Jack and do the almost obligatory trip to Ikea, this time to check some measurements before committing ourselves to splashing some cash.

Back to work for me yesterday, drafting a decision, followed by some hard labour in the garden today...anything to keep my mind off tomorrow which is Steve's next hospital assessment.  X-ray first, then the agonizing wait to see the doctor, find out what's going on inside and consequently what the next three months or so holds in store.  

Unusually for us, we sat down at lunchtime and drew up a list of all the things we want/need to do in the short and medium term.  I do hope we have not been tempting fate.... this space for news