Friday 31 August 2012

En vacances :-)

On holiday!

Normal service will be resumed on our return :-)

Sunday 26 August 2012

the lull

After a house full of guests and all the excitement of the Brompton World Championship last weekend, this week has seen a lull in activity and energy levels.  However, we did visit Bristol yesterday to see Steve's mum and drop in on our son Jack, and we'll be back again next week when things are due to start livening up again!  

I hope that by then that we will be feeling full of energy. At the moment, we are both coughing a little; my long running chest infection stubbornly refuses to clear up completely and now it appears that I might have passed it on to Steve, who is coughing and sniffing a little bit.  What a good job we weren't planning anything special this bank holiday weekend.  Notting Hill Carnival will have to wait for another year!

Whatever you are doing have fun and enjoy the long weekend :-)

Wednesday 22 August 2012

Trials and tribulations

Shortly after Steve was diagnosed with mesothelioma in June 2009, he was offered and accepted the opportunity to take part in a drug trial using a combination of cisplatin and bortezomib (Velcade) a biological therapy.  He completed the full six cycles of treatment.  Although the tumour did not shrink, his condition has remained stable in the three years since treatment.  

From time to time, we wonder whether the trial has been successful, so I scan the daily google alerts on mesothelioma to look out for results.  Today's alert included reports from the August edition of the Journal of Thoracic Oncology, in an article entitled New Chemo Research:  Good and Bad News for Mesothelioma.  

The good news concerned a study to predict patients responsiveness to Pemetrexed (aka Alimta) which is the current gold standard for treating the disease, and a promising outcome of a trial of "Sunitinib" as second line chemotherapy treatment for mesothelioma.  The bad news concerned Bortezomib - the trial drug which Steve took back in 2009.  Given Steve's sustained period free of disease progression, that news came as a bit of a shock.

Curious, I decided to investigate further.  The report is from a drug trial in Ireland, which only used Bortezomib in isolation, rather than in combination with a platinum-based drug as in Steve's trial.  Only ten patients took part in the drug trial as a "first line" treatment (like Steve) and none showed evidence of a positive response.  There is no mention of progression-free or overall survival rates in this small group of patients.  Nevertheless, based on these findings, the article concludes that Bortezomib monotherapy doesn't warrant further investigation, which is disappointing to say the least.

However, further research has revealed that trials involving Bortezomib are currently still recruiting in England, at St Barts and the Royal Marsden, as well as in Ireland, Scotland, Belgium and the Netherlands, which suggests that perhaps the outcome of the Irish research is not as clear cut as might appear at first.  

Other research in the States is showing promise, in particular treatment based on immunotherapy (SS1P), and the ADAMS trial using ADI-PEG 20 is going strong in the UK (details top right). It's reassuring to know that there are options out there, when the time comes.....You can tell we are now in the run up to Steve's scan on 28 August and the assessment on 13 September, when we hear the results.....The mind-set process of hoping for the best whilst preparing for the news we don't want to hear is now in gear. Must stay positive!

Monday 20 August 2012

leg power

The last week or so has been dominated by leg power in one way or another!

On Monday, we travelled to Brecon via Bristol to pick up son Jack.  Steve dropped us off at the Monmouth and Brecon canal basin, the start of our walk along the Taff Trail, an "easy" eight miles along the towpath to Talybont-on-Usk, our base for the night.  

The challenge came on day 2 a walk of around 18.5 miles over the Brecon Beacons, along forest tracks, former railway lines and skirting reservoirs, before descending into Merthyr Tidfil, our base for the second night, where I was happy to take of my walking boots and backpack!  

The plan had been to walk on to Pontypridd, then Cardiff. However, having seen a severe weather warning for day 3 with high winds, torrential rain and localised flooding, we decided to quit while we were ahead and save the rest of the trail for the future, perhaps cycling next time.  

And cycling was the theme of this last weekend, specifically the Brompton (folding bike) World Championship at Blenheim Palace on Sunday.  We were joined for a meal on Saturday evening by friends Rob (the racer) and Helen visiting from Leeds, Anne and Colin who travelled up from Chichester, and Ian and Ruth, recently back in Oxford from Indonesia. 

As a concession to the hot weather, riders were allowed to remove their suit jackets whilst racing (but still look smart from the waist up in shirt collars and ties!) Even so, it's still an amazing sight to see so many riders whizzing twice around the circuit in partial "business dress".  

Time trial specialist Michael Hutchinson wiped a minute off his winning time from last year and completed the 13.15 km course in 20 minutes, 17 seconds. The fastest female was Julia Shaw with a time of 23 minutes 39 seconds.  Our friend Rob was aiming for a time inside 30 minutes - did you do it Rob? Well done again, whatever the time!  Bet you were faster than Rory McGrath :-)

Another friend, Sarah, has been using her legs this weekend, climbing 3,000 ft over Helvellyn and traversing Swirral Edge in the Lake District to raise funds for Breakthrough Breast Cancer.  What a challenge - well done you!

After so much physical stuff, we are looking forward to a relatively quiet week to recover from all the excitement and my chest infection which started mid-July and is now well into its fourth week, in spite of having a course of antibiotics.  

Post script:  My image "Four Square" was featured in the Guardian Weekend Magazine on Saturday :-)   See it here!

Sunday 12 August 2012

the Wride family "Olympics"

We've enjoyed dipping in and out of the Olympics for a second week - people doing such amazing stuff but so natural and modest when interviewed about their achievements afterwards....Well done to ALL those who took part, especially those who managed a personal best, a record for their country, or created a new world or Olympic record - not forgetting, of course, all the medal winners!  

Inspired by the last two weeks, here's my version of the Wride family non-sporting events over the same period:

The Job Hunt Marathon
After job hunting for four months since moving to London in April, daughter Katie has been offered work and starts her new job tomorrow! 
Result: A gold medal for Katie

The Promotion High Jump
Son Jack's interview for a higher grade job went well and he has been promoted - well done Jack!
Result: A gold medal for Jack

The Medical Relay 
Leg 1:  Steve's return visit to the Optometrist on Monday morning went well - no signs of a detached retina, which was the initial concern. Not sure whether the spider-shaped floater has gone away, or whether he's just got used to it, but whatever the reason, the outcome is good!
Result: Steve has earned his gold medal
Leg 2: Monday afternoon, the medical relay baton passed to me with a visit to the GP as my chest infection had gone into a third week of coughing and wheezing.  Came out with a course of antibiotics which I hope will help me overcome this nasty bug...
Result: My race is still in progress, but it's looking promising...

The Photography Hurdles
Images submitted to the fine art photography website go through a screening process.  Some are simply not selected - you never know the reason why as there is rarely any feedback from the curators.  Some images go to a vote of 100 members who score on a scale of 1-6; the curators may take votes into account when making the final decision.  Some images (the minority, I'm guessing) are selected for publication without having to clear the voting hurdle.  In the last two weeks, I've had seven images selected for the 1X gallery, six of which went straight to publication - which is quite an achievement :-)  Linda's gallery on 1X
Result:  I think I deserve a gold medal! 

The "Mass Ascent" finale
The finale to our Olympic fortnight should have been taking part in the mass ascent of over 100 hot air balloons at the Bristol Balloon Fiesta.  However, the adverse weather conditions which prevented us flying in last year's fiesta and resulted in all subsequent flights over the last 12 months being cancelled chose today to strike yet again - how frustrating is that?  Mind you, woken up at dawn by rumbles of thunder, we knew it was the right decision....I hope that no such bad luck affects the Olympics closing ceremony tonight!

Result:  All flights cancelled this morning.  Steve, you have a new target - next year's Balloon Fiesta, even if we manage to take off in the meantime!

Taff Trail
Looking forward - a big challenge starts tomorrow.  Jack and I will be walking the Taff Trail: 55 miles from Brecon, over the Brecon Beacons and down the Taff valley into Cardiff Bay. It's been touch and go whether to walk or cancel because of my prolonged chest infection.  However, there has been an improvement today which is encouraging. I'm hoping that by the time the course of antibiotics finishes tomorrow, they will have done the job.  However, with little walking practice over the last three + weeks because of the cough, and not much before then, it would have been a challenge in any event.  

I wanted this trek to be a fundraiser for Mesothelioma UK to kick start the pledge I made last year and have yet to action.  However, because of the uncertainty until today about whether the trek would happen at all and the risk that I may yet have to bale out at some point if the fitness is not up to it, I think it wise to treat this as a warm up, and do my miles for meso when there's time to prepare properly!  

Jack has set me a target of rooting out my Brompton folding bike from the back of the garden shed, getting it cleaned up and in good working order so that he can ride it in next years Brompton World Championships as a fundraiser for Mesothelioma UK. Your wish is my command, Jack.  

Keep your fingers crossed that South Wales isn't flooded out next week :-)

Result : to be announced!   

Tuesday 7 August 2012

Fiesta NOT fiasco :-)

Three cheers for Baileys Balloons!  

Jo Bailey has come up trumps and found us three places to join in the mass ascent of hot air balloons at Bristol Balloon Fiesta on Sunday.  If the weather behaves itself, a dream will come true!  

Please keep your fingers crossed that the high pressure forecast at the end of the week will hang around long enough to make it possible :-)

Thank you Jo and Bailey Balloons!

Monday 6 August 2012

Fiesta or fiasco? + Updates # 1 and 2

Around this time last year, just over two years since Steve was diagnosed with mesothelioma, we pushed the boat out and treated ourselves and son Jack (who is based in Bristol) to the trip of a lifetime: a hot air balloon flight at the Bristol Balloon Fiesta, taking part in the mass ascent - one of those amazing experiences, to be treasured and remembered always.  It didn't come cheap - in fact it cost double the price of a weekday morning flight - but it was part and parcel of making the most of life while Steve was still fit enough to enjoy it.  

In the event, although the sun shone and the sky was blue, the wind speed made it unsafe and all flights were cancelled.  We have been trying to reschedule the flight ever since, but the glorious British summer has meant that five flights have now been cancelled and we are still on the ground. No one's fault. It's just the way it is when an activity is weather dependent....

In our case, there are other complications which make it difficult to arrange a flight - we have to build in time to travel to Bristol and pick up Jack, which makes it very difficult to do an early morning flight and still be awake enough to enjoy it after a 4 am start.  We also have to co-ordinate three diaries - no easy task, especially when we try to cram in as much as possible between Steve's assessments, not knowing what the following three months will bring and whether life will once more be organised around a chemo regime.  Plus Jack has a life of his own as well as work commitments which take him away from Bristol from time to time.  

So here we are, almost a year later, still trying to reschedule the cancelled flight from last August, when suddenly an opportunity opens up.  The weather forecast for this coming Thursday is looking good; by re-arranging one meeting, all of us can be free that evening and, according to Bailey Balloons website, there is availability for three people on the 18:00 flight from Bristol.  It looks like we'll be off!

Rather than wait for the office to open (we have missed out on flights before following that route) I fill in the online booking form and eagerly wait the e-mail confirmation, before rearranging our meeting with the accountant. However, when the reply comes, it is not good news. Unbeknown to us, Thursday is the start of this year's Balloon Fiesta in Bristol.  Although we paid the premium to go up in the mass ascent at last year's Fiesta which was cancelled, our voucher is not valid for this year's Fiesta.

I contact the Bailey Balloon office at once, to say that having already paid a premium for last year's Fiesta, please could they consider letting us fly at this year's event bearing in mind the number of cancellations that had happened in the meantime.  The answer was no - although our flight had been cancelled last year, the company still had to pay fees to take part and therefore do not allow vouchers for one Balloon Fiesta to be transferred to the next. We would have to reschedule.  

It's very rare that I make a big issue out of Steve's health, but on this occasion, I thought that Bailey Balloons ought to be aware of our unusual circumstances - I think having an incurable cancer counts as exceptional circumstances which might justify bending the rules just a little, especially when we have already paid the price for a special memory we can treasure when Steve's health deteriorates and he can no longer get out and about.  I explained why it was such a special occasion for us; the logistical problems of getting a date when we could fly together; how we could not commit ourselves at this time beyond Steve's next assessment, and if we did not fly before the end of this season, who knows what our circumstances would be by the time flights resume next spring?

The lady I spoke to listened sympathetically and said she would ring back after speaking to Jo Bailey (the proprietor) to see whether there was any leeway about flying on Thursday at the Fiesta, given our difficult family circumstances.  

But the answer came back, no.  I was told that that Balloon Fiesta is very popular and the only time there are three places available over this period is on the Sunday morning flight at 6 am. As Jack has tickets for a concert in London the evening before and won't be back in Oxford with us until the early hours of the Sunday morning, I had to decline.   

So there I was.  Back at square one again, trying to reschedule.  No, we could not make the next two available dates.  We have a midweek flight pencilled in before the Bank Holiday, but I won't know whether Jack can make it until I can talk to him after work tonight.  Other possible dates are further and further into the future, clashing with a week's holiday in France and Steve's next assessment in mid-September......and it goes on.....

So why the long rant now?  Well, I have just looked again at Bailey Balloons website. Checking availability, it still shows three places available on flights on Thursday evening.  Not only that, but also on Friday evening, Saturday evening AND Sunday evening, throughout the Bristol Balloon Fiesta. Surely they have updated the website by now, I thought? Out of curiousity, I clicked on the link to Bristol Balloon Fiesta flights to find that the cost of a dawn and sunset champagne VIP balloon flight during the event has now been reduced by £30 per person, presumably to attract customers. Mmmmmm. That doesn't seem to fit with the story I was told about how popular it was, and the only availability being on Sunday morning. In fact, it's giving me the opposite impression. And I'm not happy as a result. Hence the rant.  

I'm not blaming Bailey Balloons for the weather.  I imagine that the company does have to pay fees, regardless of whether flights take off at Fiesta.  I know they will re-schedule flights on a month by month basis until we can all go up together.  But time is a luxury we don't have.  What we were so looking forward to last year, and would still love to do this year, is to enjoy the very special experience of going up as part of a mass ascent of hot air balloons over the city where Steve was born and where our son now lives, something we can look back on with great joy to help us through the difficult times which inevitably lie ahead in the future.  

So come on Jo Bailey - please make a dream come true and earn yourself lots of brownie points for exceptional customer care beyond the line of duty and enjoy some good publicity in the process! 

I will update the blog with any news.......

Update # 1
Nearly three hours on since e-mailing Bailey Balloons with a link to the blog and still no response....The website has been updated, but is still showing three places available for the evening flight next Sunday .... come on Jo, you have three customers here who want to fly and that would do nicely!

Update #2
The good news is that Jo phoned back - the bad news is that she called just as I was leaving home for a doctor's appointment (now have antibiotics for the chest infection) and we haven't managed to catch each other since I returned home.  Maybe tomorrow......

Sunday 5 August 2012

work and play, agony and ecstasy.......and the cough goes on

A week when three days of work from last week's trip to Guernsey bookended two days of playing away in Chichester with our friends Anne and Colin!  

On Tuesday, we spent the day with Anne at Glorious Goodwood, watching the races including the Sussex Stakes won easily by wonder horse Frankel who enjoyed a lap of honour at the end of the race, to the delight of the crowd.  For once, Steve's betting instincts let him down, and it was the ladies who chose the only placed horse we bet on, based on its appearance in the parade ring as much as anything else :-)  

We spent most of Wednesday at the Cass Sculpture Park, also on the Goodwood Estate, where we enjoyed a wide range of artwork in a beautiful outdoor setting with views over the South Downs and Chichester, to the sea and the Isle of Wight.  Anne was very patient as we hopped from one sculpture to the next, looking for a good photographic angle!  Thank you for a lovely couple of days, Anne and Colin - looking forward to seeing you here soon!

Throughout the week, we have been dipping in and out of the Olympic Games on TV and online, having been more engaged than usual following the Olympic Torch visit to Oxford and our day out at the Olympic Park.  More by luck than design, we have caught the gold medals in the cycling road race (watching Wiggins triumph on the big screen at Goodwood) as well as the shooting and canoe salom while in Chichester. Back at home, we have enjoyed the ecstasy which greeted more golds in the velodrome and on the rowing lake at Eton Dorney.  Last night, we cheered on the athletes until we were hoarse!  How wonderful to see so many happy smiling faces.  

We have witnessed the agony too, when hopes of medals have slipped away.  Why or why do commentators keep asking inane questions about how it feels in these situations?  It's bad enough to have your hopes dashed, without having to relive it in public until the tears flow...

The soundtrack to this week of work, play, agony and ecstasy has been wheezing and coughing.  My chest infection has rumbled on into its third week, leaving me feeling quite washed out when not on a social or Olympic high. Steve has now started coughing a little bit too - always a worry....Perhaps we just need to take it easy for a while, and get back up to full strength before embarking on another round of intensive activities!

In some ways, it was a relief to find out a short while ago that our hot air ballon flight re-scheduled to today from the last cancellation, has itself been cancelled for the fifth time in a row.  Much better to be able to enjoy it when we both feel good!  

Next week will be a time to recover from this infection: sit back and review plans for the next six weeks or so, until Steve's next assessment; catch up with the other people's news, especially our fellow meso bloggers; make some more progress on the house and garden front for a change......and enjoy week two of a very special London Olympics!