Friday 22 June 2012

Good news week

After last week's high celebrating Steve's 3 years as a mesothelioma survivor, we have continued basking in the warmth of other people's good news this week.

First, we were delighted to read that Chris Knighton was honoured with an MBE for services to mesothelioma in the Queen's Birthday Honours.  Chris set up the Mick Knighton Mesothelioma Research Fund in memory of her husband who died in March 2001, only 7 months after being diagnosed with mesothelioma.  She set up the fund with the aim of raising £100,000.  Last year the total raised passed the £1 million mark.  Isn't that fantastic?  Well done Chris and all at MKMRF!

Chris Knighton MBE

Regular readers of the blog will be familiar with the names Mavis and Ray.  Mavis was diagnosed with meso around the same time as Steve.  She has been through a bad patch recently and had to stop taking chemotherapy because of how her body was reacting.  Imagine how pleased and relieved we were to hear that a scan earlier this week has revealed tumour shrinkage (again!).  We're so pleased for you both! 

After a bad reaction to her first round of chemo, Debbie in Plymouth is now going strong and feeling much better - and long may it last!

In the big wide world beyond mesothelioma, this week we have cheered as the England team got through to the next round of Euro 2012 and watched in amazement as Frankel won at Royal Ascot by a HUGE distance!

Plans are beginning to come together for a long distance walk in August, a family week in France in September and more social get-togethers with friends. Oh dear....when are we going to fit in the much needed work on the house and garden?  Not tomorrow, for sure as there are more exciting things happening!

Last but not least, a set of London 2012 tickets have arrived. I was beginning to wonder if they would ever materialise. However, there's no sign of the set ordered first, so we'll hold off celebrating until they do appear.

Whatever you are doing this weekend, have a good one!

Saturday 16 June 2012

3 year survivor

Today is 16 June 2012, which means it's been three whole years since Steve was diagnosed with mesothelioma. At the time, it felt like the world had come to an end; life would never be the same again.  The latter still holds true.  It isn't. However, life has continued through chemotherapy and beyond.  Well beyond!

Knowing that life is likely to be shorter than might otherwise have been the case focusses the mind on the importance of loved ones, family and friends; how precious time is and how to make the most of every day, even if it is simply enjoying doing very little, other than relaxing and passing time doing something that gives you pleasure.

It is also a great incentive for new experiences and doing those things you never quite get round to in the normal course of events.  When I look back over the last three years, I'm amazed at all the things we have done; a treasure chest of memories to look back on in future....

There have been the very special milestones - big birthdays, anniversaries, Christmas and New Years celebrations, births (and sadly, some deaths). We've had some wonderful lunches, teatimes, evening meals, days out and weekends away with our children, the wider family and friends.  We've traveled together in the UK and abroad, enjoying some very special destinations and experiences that have fueled our imaginations and inspired our photography. 

Throughout this period, Steve has produced, exhibited and sold some amazing artwork and been made an Associate of the Royal Photographic Society. He's taken control of a Chipmunk airplane and looped the loop; skimmed the waves aboard a RIB; shot clay pigeons for the first time; floated over Oxfordshire in a hot air balloon.  We've been to a cricket test match at Lords, Derby day at Epsom; an internal rugby match in Rome; a play at the RSC, Stratford; all manner of exhibitions, festivals, theatricals, dance and musical events, as well as rediscovering places like the Ashmolean Museum here in Oxford and National Trust properties within striking distance of home.

We have met up with old friends, made new friends and been inspired by others who face mesothelioma with strength, determination, good humour and the belief that one day a cure will be found.

We really have been very, very fortunate, in spite of Steve's illness.  Our thanks to everyone who has helped make the last three years so special.  I really don't think we could have done it without your love, support, encouragement, and good wishes.  Thank you, thank you, thank you!

Thursday 14 June 2012

Assessment day

Assessment day.  Steve went off for his X-ray first thing, then we moved on to the day clinic to hear what the doctor has to say.  The usual wait sitting on our own in the consulting room, which we find agonizingly long, then the doctor entered - one we have met before, but not the consultant who seems to have the knack of putting us at ease.......

......the usual questions "how are you feeling?"  "any problems?" "any coughing?" "are you on any medication at all, even non-prescribed medication?"  I wondered how Steve would answer this, as he takes supplements to help boost his immune system and an anti-inflammatory med which, as well as helping with his arthritis, has been found to suppress tumour growth in some studies.  He mentioned the latter, but the doctor said nothing, other than another long, slow "oo---kay" which gave nothing away, but wasn't exactly reassuring.....

On to the table for a chest examination, percussion then listening to his breathing through the stethoscope.....then, at last, some feedback.

The doctor was pleased to see how well he was.  Steve pointed out that he usually gets weighed wearing his fleece, with a big bunch of keys, wallet and phone in the pocket, but today he'd removed his jacket before getting on the scales, which would explain the apparent small weight loss.  

She then looked at his notes and said it had been a while since he had a CT scan - in fact he hasn't had one since 2009.  She said she thought it was time for a new one, partly to have an up-to-date baseline for future assessments, and partly because the radiologist had noted what appeared to be areas of change on both the current X-ray and the last one.  Nothing significant, possibly a millimetre or so in some areas.  However, a scan would show any changes in more detail.  

In some ways this news was not surprising.  We have been told at previous assessments that his mesothelioma was growing, but so slowly that the difference was imperceptible in X-rays taken three months apart.  It only became apparent when comparing the most recent X-ray with the one taken in 2009.  
To all intents and purposes, the disease was stable.  We were also told at the outset that if there were any signs of change they would look more closely on a CT scan.  We should be grateful that this is the first time it's happened in the three years since diagnosis.  

In spite of knowing this, I confess to feeling slightly apprehensive and uneasy that the doctor wants Steve to have a scan now - for no other reason than it's reminder that there has been some slow disease progression and it's reached the point when they want to look more closely.  That said, many people with mesothelioma seem have a scan before every assessment, so he's the unusual one in that respect.  

Whilst I'm feeling somewhat apprehensive, Steve, on the other hand, is much more positive.  He's pointed out that few millimeters change over three years is not an aggressive growth and he still feels fine.  Unlike some Meso Warriors, pain is not an issue for Steve and, most of the time, if he didn't know he had mesothelioma he would be blissfully unaware of the sleeping dragon inside.

On the positive side, the doctor said there's no great urgency to have the scan. She will arrange an appointment for fortnight before his next assessment so that we can look at the results when we meet again.  Unless he has a problem in the interim, she doesn't want to see him before mid-September, when he is due for the next regular three-monthly assessment.

Time to put the apprehension behind me so that we can get on and enjoy life over the summer!

Monday 11 June 2012

Long to rain over us......

Well, I suppose it was inevitable.....a long weekend to celebrate the Diamond Jubilee (or just enjoy some extra non-working time) and the wonderful British weather thinks it's time to turn the tap on - and keep it on!

We were in Bury St Edmunds the day of the Thames Pageant, celebrating the wedding anniversary of our friends Keith and Glynis and and their belated house-warming, only five years late!  It was good to meet up with other mutual friends and huddle round the open fire on this special occasion, feeling sorry for those who braved the rain in London as we enjoyed some good company, food and drink in the dry.  

We stayed that night at a B&B in Bury, in a street where a party had been planned. Although the party had taken refuge in a nearby church, the rain had eased off enough by the time we checked in to allow a game of street cricket with wheely bins for stumps to take place.  Everyone was having a great time!

The following morning we had a walk around the historic village of Lavenham, and were amazed at how much effort the local people had put into dressing the village for the Jubilee! 

Later that day we travelled on to Long Melford nearby, for a get together over pub lunch with my cousin.  The last time we had been in that pub was after her husband's funeral, so it was good to go back on not such a sad occasion. 

The rest of last week was so bad weather-wise, we were glad to be able to stay at home and catch up on other things, including preparing some images which are going to be used to promote a photographic competition later this year.  

The wind and rain on Friday meant that we put off leaving home until late in the day, hoping that things might improve and as a result, only just made it to the Royal Photographic Society's HQ in Bath to collect some prints before closing time before going on to Bristol to stay with our son Jack.  

We were back in Bath again on Saturday attending an RPS event to celebrate Distinctions.  It's not often you get to see recent work by Licentiates, Associates and Fellows.  Now we know what we are aiming for, when we go for our "F"s! Although the sun was shining outside, the wind was still strong.  As a result, we weren't surprised to hear that all hot air balloon flights from the city had been cancelled.  That's the third cancellation since we tried to go up in the mass ascent at last year's Bristol Balloon Fiesta.  At this rate, I wonder whether we will get airborne again before the flight voucher runs out!  No matter.  The cancellation gave us the opportunity to wander round Bath and remind ourselves just how impressive is the Royal Crescent.

Sunday in Bristol gave us the opportunity to visit Steve's mum before saying our farewells to Jack and heading back to Oxford.  We had to brave the rain today to re-stock on food.  I was reminded of a banner spotted in the Mall on the day of the Jubilee procession through London.  Someone had written "Long to rain over us"  - an amazingly accurate statement in more ways than one.  

Forgetting the weather for a moment, it's been a week of ups and downs in other respects.  I heard that my application was the 2000th successful award from the Photographic Alliance of Great Britain (PAGB) and as a result, some of my images will be featured in PAGB news in July.  Another image has been featured in the galleries of 1X and Fotoblur, two international photographic websites, which was very heartening after a long lean period on both those sites.  

On the downside, we learned of the death of another Meso Warrior, Norman.  Only last month, Norman and his wife were on holiday in Kent and had met up with fellow Meso bloggers Mavis and Ray for a meal out on 8 May.

Norman and Rose courtesy of Mavis's blog
Rose and Norman were looking forward to a cruise around the Scottish Highlands at the end of the month.  Instead of that, Norman was admitted to hospital in the early hours of 29 May, with pneumonia in his "good" lung - the one without meso.  He died on 7 June after a short but courageous battle.  How cruel is that?  We send our love to Rose and her family.

Norman's death has shocked the mesothelioma group on Facebook.  It's a stark reminder of how vulnerable you are to infection when undergoing chemotherapy, as he was.  So please, please, please, all of you out there whose immune systems are weakened by chemo, take extra care of yourselves until your strength returns, and that includes you Debbie in Plymouth currently undergoing chemotherapy; you Tess in Kent, if you decide to re-start chemo: you Mavis also in Kent if more chemo is an option after your next scan, not forgetting you Jan, if you go down that route in September.

We will know what's in store for us after Steve's next assessment this Thursday. Until then, we are in the horrible waiting period - waiting for Steve's X-Ray and assessment; waiting for the results of my biopsy six weeks ago which should be available in the next week or two, and for the results of the regular mamogram which should come through around the same time.  As usual, I am getting very twitchy.  I think I'll go and see how the England team are doing against France in the Euro 2012 match.  At least we will know the results of that in less than an hour!

Saturday 2 June 2012

messing about on the river and other things

The Queen may be having her River Thames pageant tomorrow as part of the Diamond Jubilee celebrations, but we had the most wonderful evening out on the same river but further upstream, last Monday to celebrate the birthday of our friend, Ruth.  

If only every teatime could be spent wafting along on a balmy summer evening in good company, nibbling sandwiches and cakes and drinking tea....or wine... you slip passed cows and horses coming down to the riverbank for a drink, and other more energetic people slip past you rowing smoothly.  Wonderfully civilized and a great way to celebrate a special occasion.  

Thank you Ian for organising the event and inviting us along!

Later in the week there was a another trip over the water for me for a couple of days work in Guernsey, followed by more socialising yesterday when Geoff and Irene, friends going back to our student days, joined us for lunch before going on to a meeting of the Doric Club for a get-together with other graduates of the School of Architecture at Oxford Brookes University, where we both studied. However, this was one occasion when Steve preferred to stay at home, not surprisingly.....the School of Architecture seems to be the most likely source of Steve's exposure to asbestos dust, when he worked there as a student one vacation knocking down internal walls to create an open plan studio. Enough of the negative thoughts!

The Jubilee weekend has started well.  Steve's horse in the Derby came third so he got his money back and a bit more! One of my photographs was published in today's Guardian Weekend Magazine under the theme "Purple", so I'm a happy bunny. If you have read the blog about our Ruby wedding anniversary trip to Marrakech, it might look familiar!  

And there's more socialising to look forward to in the next few days, come rain or shine.  For those of you who are fit and well, whatever you are doing, I hope you have a wonderful long weekend of celebrations!  

For those of you who are having a difficult time, may your pain ease, may you find relief and the strength to stay positive, and may you be surrounded and cocooned by love and support.