Highs, lows, some progress and some frustrations!

Over the last 10 days or so, it feels like we have been through the whole gamut of emotions...

Last weekend was a high, visiting our daughter and her partner in London. We met them for lunch at Tate Modern, went on to see the Matisse Cut Outs exhibition, 

then walked along the Thames, over Tower Bridge and around the Tower of London to see the ceramic poppies spilling out of the building and around the moat to commemorate those who lost their lives in World War 1.

Rather than returning to Oxford as we would normally do after a day out in London, we had booked into a B and B near Katie and Ed's flat which meant we could enjoy an evening meal out together at Mosaica, part of a converted chocolate factory in the middle of an industrial estate, followed by a glass or two of wine back at their place before going back to our overnight accommodation, a short walk away.

After a leisurely breakfast on Sunday morning, all four of us took the bus up to Alexandra Palace (or Ally Pally as it is affectionately known!) 

to browse the farmers market, walk around the People's Palace and enjoy the expansive views over London, before going back to their flat for lunch then on to Paddington and home on the train.

The high turned into a low when we read about the death of Tess, one of our meso blogger friends.  Another reality check...

The big garden makeover started on Monday morning, with contractors coming in to do the heavy work; taking up the remaining old paving slabs, digging out the base for the new paved area; filling it up with hardcore and a layer of sand then setting out the new paving.  Most of the time we kept out of the way, working upstairs and letting them get on with it - just popping down when called if there was a decision to be made, or something to sort out.

Progress was looking good when I left on Thursday for a work-related trip to Guernsey, but there was bad news on my arrival home on Friday.  We had ordered and paid for railway sleepers a couple of weeks ago.  These are going to be used to make raised beds around the paved area. When the contractors went to collect them on Friday, only 10 out of the 15 sleepers we had paid for were available. The rest had been sold on to someone else!  Can you believe that? I was spitting feathers, especially when we were told that they had no more in stock and didn't know when the next delivery would arrive.  AWBS -  you have been named and shamed.  This is not the way to conduct business or win customers. 

Without all the sleepers, we can't finish the raised beds, do the planting, finish the job and clean up the house (everything comes in and out through the house, so it gets mucky even with the greatest of care...) We went to AWBS yesterday morning to ask what they were going to do to sort out the mess they had got us into.  The chap in charge on Saturday said he couldn't help, but he would ask the manager to contact us on Monday.  I spent yesterday afternoon looking for a new supplier.  We shall see what happens next week.

These circumstances would be annoying at the best of times, but with a trip away planned later in September and the likelihood that Steve will be having treatment or one sort or another not so long after that, we can't let the job drag on. Once life is dominated by hospital appointments, everything else is likely to go on hold.  We simply don't have the time to waste. SO frustrating... 

However, it wasn't all bad news this weekend.  If you are a regular reader of the blog, you will know that from time to time I submit a photo to the Guardian Weekend Magazine in response to the weekly theme.  If I'm lucky, its published in the paper or online. The grand total of my selected images was 11 up until yesterday morning, when number 12 appeared in the magazine, taking pride of place in the final "Your Pictures" feature. That put a smile on our faces - and a good note on which to finish the series.

Other highs included a meet up with old friends at on Friday night, and receiving a copy of the 1X yearbook Mono, which includes one of my images - a great honour.  

Missing the launch of a friend's book on Wednesday was frustrating.  However, an artwork project we have been working on with a mutual friend has turned out to be a success.  Discovering we had left the freezer door slightly ajar and everything had melted was a bit of a downer earlier in the week, but its re-stocked now, so all's well that ends well.  

Setting aside the loss of yet another brave meso warrior, on balance, I think the highs and progress made over the last 10 days more than make up for the lows and the frustrations in this period.  That's got to be worth celebrating. 

Today has been another high, but more about that - and some pictures - later in the week.  

Hospital appointments have been coming through thick and fast.  Steve had his scan last Friday.  I have a spinal nerve block injection next Friday.  Two appointments have come through in early October for Steve to see the Clinical Trials Team and the consultant oncologist, then we have flu jabs in mid-October and a follow-up appointment with a consultant for me in December to see if the spinal nerve block helps relieve my back pain.  For people who don't plan ahead very far, the diary is looking remarkably busy...

Recipe for a memorable Christmas

Ingredients 

Christmas tree, cards, presents, food, wine, fizz, games, leisure time and people.  Mix and match quantities and vary cooking times according to your personal taste, but don't scrimp on the most important ingredient - loved ones, family and friends.....

Method

At least 24 hours before the big day - longer if possible - marinade guests with wine, fizz or Christmas tipple of their choice to help them unwind and get into the festive spirit. Allow yourself to be marinaded by others as part of their festive preparations!

When fully relaxed, warm up gently as the presents go under the tree on Christmas Eve, and stir occasionally to keep the circulation going...

On Christmas morning, carefully lift the presents from under the tree and remove the wrapping gently to discover the contents.

Whilst waiting for dinner to be ready, use the time to play with presents and keep up blood sugar levels in between taking power naps.  Some wonderful combinations include sudoku and chocolate biscuits; crosswords and chocolate truffles; books and chocolate ginger sticks; DVDs and chocolate money; games of "Pointless" and boxes of chocolates. Oh....and did I mention chocolates?  

But don't go over the top or you will spoil your appetite for dinner.....

Hint:  Don't forget the parsnips roasting at the back of the oven, out of sight of the casual observer....we discovered them at the end of our meal, but they made very good "leftovers" soup the next day!

Dine by candle light - it's flattering and romantic, and the best option to see what you are eating if your electricity goes off (fortunately, we were not affected by power cuts caused by storms in the south of the UK but pity those poor people who were...)

Wake yourself up with a Boxing Day walk - carefully avoiding swollen rivers, flooded roads and footpaths, whilst enjoying the diversions on your way to higher ground!  But don't worry about a bit of mud - it just adds another texture to the rich tapestry of the festive season.  

We headed off to Wittenham Clumps to enjoy the fresh air and fine views over the Oxfordshire countryside (quite a lot of which is under water at the moment).

Wittenham Clumps

Steve captures the view from the top

The Thames in flood below Wittenham Clumps

Daughter Katie, partner Ed and Steve get a breath of fresh air

After a few hours outdoors on a bright, frosty day, it's important to warm up with food and drink at a nearby hostelry before returning home for another pre-dinner Boxing Day power nap. 

And so another Christmas has come and gone - Steve's fifth since the mesothelioma diagnosis.  Thank you to everyone who helped make it memorable with your good wishes, social gatherings, delightful gifts and wonderful company!  

It feels rather strange now the house is empty again, but it won't be for much longer as there will be another social gathering here before Twelfth Night. In the meantime, there is a New Year's Eve celebration to look forward to tomorrow, followed by lunch out with Steve's brother and his wife later in the week.  Plus a get-together in London with friends from my school days before we need to prepare ourselves for the meeting with Steve's consultant on 9 January to discuss treatment options and decide what happens next.  

To all our family and friends, we send our very best wishes for a happy and healthy 2014 and hope we will see you again at some point during the year.  And special hugs and positive thoughts for all the Meso Warriors who continue to fight this disease; their carers and loved ones.  We are moving closer to a cure...One day it will come....Who knows, maybe 2014? 

preparations and parties

Since I last posted, there has been a significant date for us. 16 December marked four and a half years since Steve was diagnosed with mesothelioma.  I  hoped and felt, but never dared expect, that I would be able to say that when I started writing this blog.  But it's a very good feeling to pass yet another milestone on this journey!  

The last 10 days or so have been dominated by preparations and parties.  

Preparations
We have started collecting information to look at and consider carefully before we meet Steve's consultant in January to discuss options now that the mesothelioma has started to grow again.  

Andrew Lawson, doctor and fellow meso victim, has already given us some words of wisdom from his perspective as a seven year survivor.  

Barts Hospital has come back to us with details of a clinical trial of a new drug called Tremelimumab due to start in January.  Looks interesting but we are not sure whether Steve would be eligible as it appears to exclude people with a medical history of autoimmune diseases, including arthritis. Waiting for clarification on that and details of other trials currently recruiting at Barts.

We have asked the Specialist Lung Nurse team at our hospital to ensure that we talk to the consultant in January; told them we would like to know more about the Phase 1 VanSel clinical trail currently recruiting and sent links to the Barts clinical trials, so that we can have an informed discussion when we see Dr T.

Having started that ball rolling, we have at last made progress on Christmas preparations - cards printed, signed and posted; some presents on the way, others on order and due to arrive any time now (I hope!); wreath shining on the front door; the tree came inside and was dressed today, although we have yet to decorate the rooms, hang cards and distribute the ones we deliver by hand ..still, plenty of time to do that!  

Parties
Having worked hard on the preparations, we thought we deserved a bit of partying!  

The festive season kicked off with Em and Nick's engagement party, dancing until the early hours!  That was followed by Helen's "Equator Day" gathering to celebrate that she has now lived in the UK as long as she lived in Zimbabwe! 

Christmas proper kicked off on Sunday with mulled wine and mince pies at Tony's house, one of our neighbours just a few doors away, and a chance to chat with other neighbours we don't see that often.

Wride and Company (i.e. me and Steve!) travelled to London yesterday for the "office" Christmas lunch at Ronnie Scott's Jazz Club in Soho - an event which lived up to and indeed, exceeded, expectations!  In fact, it was a complete hoot, with good food and wine, prosecco on the house on arrival, party hats, streamers, poppers and balloons AND kazoos for when people had loosened up a bit (which didn't take long).  The house band were great, especially the second set where they invited requests for songs to sing in different styles, like a reggae version of Silent Night, and operatic version of Jingle Bells, Good King Wenceslas punk style....you get the picture.....

This will give you a flavour ...it's the last couple of minutes of the show - Steve is the one in the dark clapping like mad!! 



With preparations to complete and more parties to look forward to in the coming week, I doubt whether I will post again this side of Christmas.  So I will take this opportunity to wish you all well and send love from both of us to you and your families.  And very special positive thoughts and hugs to the meso warriors and their carers, and those who find themselves alone this Christmas time, but not by choice.  

Linda and Steve xx

negative to positive...for now, at least

What does it take to turn us from being a bit grumpy into feeling much happier?

• some sunshine and blue skies
• a photo featured in the Guardian Weekend Magazine

• a "Topping Out" ceremony for Osney Lock Hydro, a community-led and funded renewable energy scheme on the River Thames, close to home, which we have supported

• an evening get-together in Bristol with friends from my time at PINS, including drinks in the Old Fish Market, a good meal at Giuseppe's On The Steps, and an overnight stay sharing a city centre apartment with Baz and Lynne who were very good company

• seeing Steve's mum looking relaxed and happy

• having an enjoyable lunch with our son Jack before returning home to Oxford this evening

With help from family and friends, we have gone from feeling negative to positive in the space of a few days.  How we feel tomorrow will depend on the outcome of Steve's hospital appointment.

Assessment Day is nigh.....

What? Where? Who?

Less than two weeks to go until Steve's next hospital assessment, so we've been keeping busy to distract ourselves...What have we been up to?

A day out in London, starting with lunch in Gordon's wine bar near Charing Cross, followed by a visit to the National Portrait Gallery to see the Taylor Wessing Photographic Portrait exhibition.  Fortified by coffee and cake, we then walked up Charing Cross Road, and took some pictures of the brightly coloured buildings in St Giles before catching the bus along Oxford Street to do some window shopping in John Lewis and refresh ourselves with tea for two.  

Back on the bus to Westminster to meet up with daughter Katie after work, then a stroll down the Embankment to join in the relaunch of Tate Britain.  The new entrance looks wonderful, but I think we will need to go back when it's less busy in order to appreciated it properly.  

We should have looked at the re-hung galleries, but ended up in the cafe catching up on Katie's news over a couple of bottles of wine and some food - much more sociable.  The art can wait until the next visit....

What else?  An afternoon photo shoot at the Bishop Edward King Chapel, Ripon College near Oxford - an exquisite building which was shortlisted for this year's RIBA Stirling Prize. We almost abandoned the jaunt due to the awful weather in the morning, but the clouds cleared, the rain stopped and the light was wonderful - great for taking shots!

The weekend kicked off with a social event - one of my friends celebrating 25 years with the Council. Congratulations Tom!  

And a chance to meet up with other old friends from my former life...  Some people seemed a little worried seeing me there on my own, but all looked delighted and relieved when I told them Steve is still going strong!

The festive season is now in full swing here in Oxford - Light Night celebrations on Friday evening; the city centre closed to traffic for the children's lantern parade 

a Christmas market, live music on stage and traditional fun fair in St Giles; 

the Ashmolean Museum open until late hosting more live music ranging from fiddlers to country jazz via an all-comers choir and a whole host of other cultural events over the weekend.  

Too much choice and not enough time!  But everyone seemed to be enjoying themselves.

And so to the Who? bit in the title of today's post. Over the weekend, we've enjoyed a "Dr Who" fest celebrating 50 years since the series started broadcasting.  I feel very old admitting that we remember the first Dr Who and very young admitting that we still enjoy it!  

In between watching rugby on TV and keeping up with the Ashes cricket series, Steve has designed this year's Christmas card and printed the proto type which means it's time for me to write the annual newsletter, looking back over the last 12 months. The last day for posting to our friends in Australia is 5 December -the same day as Steve's next assessment...do I wait for the assessment result and miss the post?  Or catch the post and miss out the most important bit of news? Decisions, decisions...

The assessment appointment letter came in this morning's post.  Steve seems to just take it in his stride.  I'm the one who starts getting a bit jittery at the thought of what we are going to hear.  Perhaps this would be a good time to think about Christmas presents instead!  

Big hug to all the meso warriors, especially those going through chemo at the moment and those who have been told that no further treatment will be made available to them - how cruel to take away hope....

Last but not least, if you have or care for someone with mesothelioma, please read Mavis's blog posted 24 November if you haven't done so already.  There is some interesting information about possible changes to the law in the UK which may facilitate research; a warning about toys made in China which contain asbestos, currently on sale in Australia (and maybe elsewhere - who knows?) and the transcript of a speech given by Chris Winter of the Independent Asbestos Training Advisors (IATP) about raising awareness of the risks associated with asbestos.  You can access the page by clicking here  

Stay safe!

All's well that ends well

There are times when everything goes to plan.  And there are times when the unexpected pushes us off track.  We've just had one of those weeks when few things went to plan but, in the end, everything worked out better than might have been expected. 

The intention was to spend some time in Bristol, putting in four days work to help our son finish off some DIY projects which need more than one pair of hands.  However, before driving anywhere we had to get the car repaired following a close encounter with a high kerb the weekend before.  The car wasn't ready until the afternoon and as a result we didn't arrive in Bristol until teatime on Day 1.  Having unloaded the car, unpacked and sorted ourselves out, we decided it was too late to start any DIY - we would move on to Plan B and begin fresh on Day 2.

Plan B was soon abandoned when we picked up messages; one from friends in America to say that their daughter Erin would be visiting Oxford and would like to meet up with us. Oh dear....there we were in Bristol with no contact details for Erin to say sorry, but we are not at home in Oxford to greet you....

The other message was from the 24 Hours in Bristol Photography Competition people asking for a high res version of an image I had entered into the competition so that it could be printed on Thursday and displayed in the exhibition which launched on Friday.  There we were in Bristol; the high res version of the picture was on the computer in Oxford.  What to do?

After a bit of agonising, we were on to Plan C: drive back to Oxford the following morning, sort out the picture and return to Bristol after lunch to fit in some DIY on what remained of the day.  It seemed a bit extravagant in terms of time and money to do the round trip between Oxford and Bristol on Day 2, but it turned out to be a good call.  

As we opened the front door at home, we were greeted by a unexpected sight - one of our neighbour's cats sitting on the stairs!  She must have invited herself in the day before while we were going backwards and forwards loading up the car, and we hadn't noticed.  Considering the cat had been locked in an unfamiliar house for nearly 24 hours without food or drink, she was remarkably relaxed; happy to see us and in no great hurry to leave.  We dread to think what would have greeted us had we not returned home for four days...

We also picked up a message on the answer phone from Steve's brother with a request to sort out some financial business for Steve's mum in Bristol.  Had we not returned home briefly on Day 2, we wouldn't have picked up the message for several days, too late to do anything about it whilst in Bristol.

There was just enough time on our return to Bristol to take a carload of wood and cardboard to the recycling centre before it closed, but that was all we managed to do on the DIY front on Day 2. However, we did have a very enjoyable meal out that night with Diana, another member of the Wride family based in Bristol and catch up with her news!

Both Steve and I were still having problems with our joints (my back, Steve's knee) the following morning.  Rather than aggravate our aches and pains, Steve went off in the morning to sort out some financial business for his mum, while Jack and I stocked up on food, and we all went to visit Steve's mum in the afternoon to bring her up to date with family news.  

So...No DIY whatsoever on Day 3...However, our nephew and his partner had invited us to a meal that evening, and it was wonderful to meet up with them and their lovely daughter Esme.  

Steve was honoured to be asked to read the bedtime story!

Somehow, it didn't seem worth starting any DIY on Day 4, knowing there wouldn't be enough time to make any significant progress.  Instead we had a family bonding session on the sofa watching the England-New Zealand International rugby match together; took our time to pack and load the car and drove back to Oxford in a relaxed mood on Saturday in the early evening.

The answer phone light was flashing when we arrived home. It was a message from Erin, the daughter of our American friends to say that she would still be in Oxford until Sunday and hoped that her and her boyfriend Forest could visit us before returning to London that night.  

Having restocked with food the next day, we were delighted to greet them for afternoon tea on Sunday and spent a happy few hours catching up with their lives.  Around 6.30 pm, Forest mentioned that they had left their luggage in a locker at the Ashmolean Museum to save carrying it round.  What time did the museum close on Sundays?  We checked online and it was already closed, so no way to rescue bags from the lockers that night.  The Museum closes on Monday too, but hopefully there would be staff around.

If you are a regular reader of the blog, you will know that after several months of on-off work, we now have a refurbished room to accommodate staying guests and a new sofa bed in the loft for overflow visitors.  Last night, they both came into their own, providing a safe haven for Erin and Forest until they were able to rescue their luggage this morning from the Ashmolean Museum and return to University in London.  We had the pleasure of their company for longer than expected, and they had a good night's sleep, so the new guest room and sofa bed in the loft are a success!

So...All's well that ends well as they say. The DIY will just have to wait for another time....  

I hope that by my next post we will both be 100% fit (or as fit as Steve can be with mesothelioma) with no more aching knees/backs and that a minor mouth infection and sniffle which have been bothering Steve for the last few days will have cleared up. He's convinced it's nothing to do with the mesothelioma (and I'm sure he's right).  However, anything that causes coughing starts alarm bells ringing, so I will be keeping a beady eye on Steve in the meantime!

With another busy week ahead, there's a lot to get through today catching up on the home front after our short break in Bristol and weekend visitors, and reading about what's happened to the other meso warriors over the last week...but here's a special big hug for Mavis who is recovering from a nasty fall, and for Jan, Lou and Ray who are all on chemo  xx

Progressing the "to do" list, a couple of treats and some very important advice

Although knocked sideways by Tuesday's sad news about Australian meso warrior Steve Cook, we've managed to make some progress on the mundane "to do" list over the last week.  Not very exciting but it has to be done....

I donated blood for the first time in almost 12 months, as we've not been around for sessions held earlier in the year. The old camp beds have been replaced by moulded plastic chairs which tilt back to put you at the best angle to get the blood flowing.  A bit like sitting in a giant baby car seat....

The new mattress was delivered; LED lights fixed behind the bed head/storage screen and mirrors attached to the inside of the wardrobe door - at long last the guest bedroom is properly finished, ready for our staying visitors...

The mountain of ironing has shrunk to a molehill; the last of the summer clothes packed away and winter woolies pulled out - we are as ready as we'll ever be for whatever the weather throws at us...

The Oxford Photographic Society Annual Exhibition finished on Friday; framed prints have been collected and stored away; new prints prepared and artist statement written for the next exhibition which opens in January at the Link Gallery, John Radcliffe Hospital here in Oxford....

I attended the local Cancer Services Patient and Carers meeting to discuss the results of the National Cancer Patient Experience Survey 2012/13. Mesothelioma is not listed as a separate cancer in its own right, but is lumped in with lung cancer even though it can occur elsewhere in the body. Consequently, it's impossible to pull out any useful information specific to meso - what a pity....

...However, one item caught my eye.  All cancer patient are supposed to be offered a written care plan.  This should reflect a holistic approach to care, encompassing not only a treatment plan but any other matters affecting the individual concerned including, for example, emotional trauma; financial concerns; advice about diet, exercise, suitable complementary therapies; right down to things like who will look after the dog/cat/budgie if I can't?  

I don't recall Steve ever being offered such a care plan.  In fact, I'm not even sure who is our key worker/clinical nurse specialist to ask about such a plan - and I thought we were on the ball when it comes to Steve's cancer.  It would appear not.....

Our reward for progressing the mundane stuff was a trip to the cinema to see "Gravity" in 3D - put on the 3D specs and I defy you not to duck and dive as things leap out of the screen at you!  

We also treated ourselves to a couple of tickets to see Bristol Rugby play London Welsh at the Kassam Stadium, home of Oxford United FC.  Not so much of a treat as we hoped, as Bristol (Steve's team) didn't exactly cover themselves in glory.  Still, the sun shone and we didn't freeze which is what usually happens on those rare occasions when we watch ruby live....

It was also very moving to stand in a crowd of 1800 or so during the two minutes silence for Remberence Sunday...

Unfortunately, a close encounter with a high kerb in the scrum to get out of the car park at the end of the match has left the car's exhaust sounding rather loud.  Another job to add to this week's much longer "to do" list....

It's not just the car that's playing up.  Steve's knee and my lower back have been causing us problems, so we've had to resort to paracetamol and ibuprofen gel to keep us going. On top of that, I've come down with a nasty cold.  

Still, at least we have been able to get on and do a few things, unlike those meso warriors going through tough times. Sending you all a big hug x 

Last but not least, thanks to IATP (Independent Asbestos Training Advisors) for sending us a supply of the "Take 5 and Stay Alive" leaflet produced by the British Lung Foundation. Go to website by clicking HERE and watch the video.  It's only 30 seconds long.  You can spare that amount of time.  Do it NOW please....it might save your life, or the life of someone you love...

an early morning, a late night and some bits in between

Most people with mesothelioma seem to have scans every three months to check what's happening inside, whereas Steve's three monthly hospital assessment has usually been preceded by an X-ray.  Scans have only been used when the X-ray shows up something of concern, as a base line before treatment and to assess response during and following a chemo regime.  

It looks like the local approach is now shifting towards what happens elsewhere, with more frequent scans to get a better picture of any changes.  Steve's previous scan was earlier this year in late February after finishing six cycles of chemo (pemetrexed and carboplatin).  X-rays in June and September have now been followed up by another scan, as Dr T thought it was about time to compare what's happening now with the one taken 8 months ago.  

Nothing to eat for two hours before the scan appointment scheduled for 9.45 am, hence what was (for us) an early morning!  The scan itself was uneventful, apart from the usual problem of not being able to find a vein first time round for the injection of contrast dye which helps the radiologist measure areas of pleural thickening and nodules of cancer growth.

The late night referred to in the title of today's blog was after a day out in London.  We arrived in time for an early lunch at Gordon's Wine Bar in Villiers Street - reputedly the oldest wine bar in London and worth seeking out if you are in the Charing Cross area. 

Then on to the National Gallery to see "Facing the Modern" an exhibition of portraits painted in Vienna around the turn of the century, including work by Gustav Klimpt and Egon Schiele (making up for just missing the Schiele exhibition on our recent visit to Budapest).  

Fortified by coffee and pastries, we headed off to Portland Place for a behind the scenes tour of Broadcasting House, the home of BBC Radio and Music, the World Service and News.  

It was fascinating to look down into the news room level from the media cafe and see the weather forecast being presented in its own dedicated studio space in the big new extension which opened earlier this year.  

We also sat in the BBC Radio Theatre in old Broadcasting House, where news bulletins had been broadcast throughout the war, even as a bomb ripped through the building.  

For those brave (or foolhardy) enough to have a go, there were opportunities to read the news or present the weather to camera, or take part in a short radio play, with sound effects.  

Sadly, the photo opportunities were few and far between, whilst security was tighter than expected (we were frisked and had bags scanned twice, even though we had been under the eye of two tour guides the whole time).  However, it was a fascinating insight into modern day broadcasting that seemed more meaningful when you were there, rather than reading about it online.

Our last event of the day was attending the launch of the RPS International Exhibition of Images for the Screen, which includes a couple of my photos.  An interesting collection of images, although we were surprised by the repetition of some of popular themes. 

After a long and eventful day out, we were dozing in our seats on the train journey home.  Really must learn to pace ourselves a bit better...  But perhaps it was the early morning start of the previous day catching up with us!

The bits in between include a continuation of the house de-clutter, with more stuff recycled, more bags to the charity shop, and some odds and ends sold on eBay, including a family-sized suit case which will (we were told by the successful bidder) be stuffed with clothes and taken to an orphanage in India.  Had we known that, we'd have happily donated the case to such a good cause!

No blood, but with lots of sweat, a few choice words and just a few millimetres to spare, we managed to get the ottoman bed base upstairs and into the guest bed room, moving that project another small step forward.  When the new mattress is delivered next week, it will be finished at long last! 

It's now less than five weeks to Steve's next assessment on 5 December, coincidentally the same day that fellow meso warrior Mavis (diagnosed in June 2009, like Steve) will be having her assessment.  We will all be going through "scanxiety" together.  Now the days are shorter and the weather colder, it's time to plan lots of things to do indoors to distract ourselves in the meantime. 

As always, we are thinking of fellow meso warriors and carers, especially those having it tough for whatever reason. I said in my last post that there are moments when Steve feels guilty about how well he's doing when so many others are going through difficult and heartbreaking times.  I was touched and relieved by those who responded that we shouldn't feel that way. Thank you all so much.  

Enjoy the fireworks but stay safe!

Post Scrip:  I have added another meso blog to the collection.  Click on "Lorraine's Journey with mesothelioma" under We Are Not Alone (top right) to find out more about how mesothelioma is treated in China

photos, furniture and friends

Life has calmed down a little this last week....the lull before the storm, quite literally as it happens.

....Early in the week, we sorted through our photos from the 24 hours in Bristol photo shoot, selecting, processing and uploading our submissions to the competition website. If you are interested, you can see Steve's images by clicking here and mine by clicking here.

Over the last few days, we have been playing musical furniture - shifting things around to be ready for the arrival of the new bed for the guest room, which was delivered yesterday.  That doesn't sound like much... However, it involved disassembling and reassembling two sofa beds; carrying one downstairs ready to be collected by its new owner after a successful sale on eBay and lifting the other to its new home up in the loft, which doubles as bedroom when family and friends stay.  

The last piece of the jigsaw involves carrying the new ottoman bed base upstairs to the guest room. Neither of us are very enthusiastic about this lift, so I am putting it off by writing the blog and Steve is searching the weather channels for the latest news on the big storm that is due to pass over the southern part of the UK during the next 24 hours.

The social highlight of the week was a visit from Rufus, who (many years ago) used to live a few doors away but is now based in Edinburgh with his family.  It was lovely to catch up with his news over coffee and pastries yesterday morning.  With good friends you just slip back into conversation as if the intervening years didn't exist....

We have also caught up with what's happened to our cyber friends in the meso community.  There has been some good news - Tess's review showed stable disease and she is now looking forward to the next three months! 

Other news is not so good.  Lou in Australia had to postpone her planned chemo due to low blood counts, but thankfully is better now and feels ready for the next round.  Amanda's Ray is back on chemo and suffering the side effects.  On top of pains and drains, Jan has come down with a cold - how unfair is that?   Sending our love to all of you.  

Steve in Oz enjoyed a cruise with his wife Gail, but his health is deteriorating rapidly (or as he puts it "the Fat Lady is tuning up...") and he is now having to consider those end of life issues we all hate to think about.  Steve, we send a BIG hug and lots of love to you and Gail from the other side of the world xxx

Closer to home, Mavis's news that her meso has started growing again, in spite of zapping it with another chemo regime (the fourth since diagnosis) has cast a shadow over the mesothelioma community and beyond.  She is going to take a break from treatment, enjoy the festive season and have another scan in the New Year before deciding the next step.

We feel close to all our meso friends, sharing each other's roller coaster of life, but we feel particularly close to Mavis as she was diagnosed with this cancer in June 2009, the same as Steve.  We have been traveling the journey together since finding each other in the virtual world. Mavis, get ready for a big kiss and cuddle coming on the wind from Oxford to you from us xx

As I write, another meso warrior is close to death, at home, surrounded by his family.  They have been telling him how much they love him and that he can "go to sleep" and be a star in the sky when he is ready, because they love him that much....It's his birthday today; they think he wants to wait until today before he lets go of life....

I usually manage to find something positive to say in my blog posts, but it's not always so easy. Today has been one of those difficult days, for obvious reasons. Not for the first time, Steve says he feels guilty that he is still able to enjoy life while others with mesothelioma are having such a tough time.  I feel the same, which is why today's post may sound a bit subdued.  

However, life goes on.  We can't put off carrying the bed upstairs any longer.  Onwards and upwards, as they say. Here's hoping that the next post will bring more good news than bad.  

The wind is already quite frisky here.  If we had any, we would be battening down the hatches ready for tonight's gales and storms.  Take care if you have to go out there tonight or early tomorrow.  Stay safe!

Budapest, Bristol and buddies

The last 10 days or so have been a bit of a whirlwind of traveling, socializing and photography.  It's been great, if rather tiring!

It's always exciting to do things for the first time, and there have been many "firsts" for us recently:  first visit to Hungary; first time in Budapest; first 'cruise' on the Danube; first taste of 'unicum" and first time meeting up with more virtual friends, as well as the pleasure of reunions with those we've met in the flesh before!

Where to start?  Well, a while back some of our photography friends were talking online about meeting up in Budapest in October.  At the time, we had no idea whether or not we could make it.  However, when Steve's condition was confirmed as stable in September we thought it might be fun to join the party.  When we met our friend Giuseppe in London shortly after Steve's assessment, he convinced us that we should join him in Budapest, along with others known only to us at that time by their names and images.   

It was an amazing gathering of virtual friends from all over the world.  As well as Giuseppe from Italy, we met Ralph from Switzerland, Isa from Germany, Carolyn and Gerry from California, Gustavo and Carmen from Mexico, Budi from Indonesia, and Agnes who lives in Budapest and co-ordinated the meet up.  We were the UK contingent, along with Jenny from Windsor.  We are almost neighbours in England, but it took the trip to Budapest to bring us together!  And here we all are, having a feast on our first night to celebrate this wonderful occasion.  Thank you Budi for sharing the photo!  

Our five days in Budapest involved lots of eating and drinking with the group, including our introduction to unicum (a herbal digestive liqueur, which is the perfect finish to a tasty meal!) 

Although we were meeting most people for the first time face-to-face, it felt like we were good friends from the start - how special is that?  We would love to see you all again, where ever and when ever the next meet up is organised, subject of course to Steve's health.  In the meantime, if any of our photography buddies are reading this post, we have a guest room and would be delighted to welcome you to Oxford if your travels bring you to the UK!  

In between all the socialising, we managed to fit in some sight seeing - lots of walking; riding the trams, buses and metro, the funicular railway and the public transport boat service to see Budapest from the Danube.  

We enjoyed spending time in the Szimpla Bar, one of Budapest's "ruinpubs" where the Sunday Farmers market was in full swing; 

Szimpla ruin pub

then on for a stroll through downtown Pest enjoying the street entertainers and free "doggy hugs" on the way, ending up at the Danube; 

Tired after giving strangers lots of free "doggy hugs'

Street musician, Budapest

Street artist, Budapest

Relaxing by the Danube

We managed to fit in an early evening visit to the Palace of the Arts before meeting up with the group for another meal out.  After saying a fond farewell to most of our friends, we walked along the river past the illuminated parliament building, to aid the digestive system on our way back to the flat in Pest which was our base during the trip.

Palace of the Arts,  evening

Parliament building by night

No visit to Budapest is complete without a trip to the Castle and Fisherman's Bastion on the hilly Buda side of the river, so that's what we did the next day

Fisherman's Bastion, Buda

lunch at Buda Castle

On the Danube river bus

before hopping on the river bus to Margaret Island to rest our weary feet as we watched the dancing fountains before meeting up with Agnes for our penultimate evening meal.

We were back on the boat the next morning to revisit the "whale", the Palace of the Arts, the National Theatre and the ziggurat building, which you can walk up to get fine views over this arts complex, before returning to our holiday flat to get ready to meet up with Agnes, who kindly invited us to dinner in her own home.  What better way to spend our last evening in Budapest?  Thank you Agnes for making it special!

The "whale" CET building which will house events, bars and restaurants when it's finished

Foyer of the Palace of the Arts

Staircase, Palace of the Arts

Ziggurat building, the gallery of the National Theatre

Outdoor activity was somewhat curtailed the following day as the equivalent of a month's rain fell in one day....so after a quick trip to Heroes Square, and a look around the Art Nouveau Paris Department Store, we headed off the the National Gallery to see an exhibition of Robert Capa's vintage photos in the dry.

The huge atrium at the Paris department store

Luckily for us, we had arranged for our host Nora to look after our bags and drop us off at the airport in the evening, ready for the flight home. Better late than never, we finally got to sample goulash soup at the airport before boarding the plane for the return trip, eventually getting home in the early hours of the following morning.

Less than 48 hours later and we were traveling again, this time to Bristol for an overnight stay with son Jack so that we could take part on the "24 hours in Bristol" photo shoot. More walking about.....Oh, our aching feet!  But a good opportunity to enjoy some of Bristol's amazing graffiti and the harbourside area by day and by night.  

Wall art, Stokes Croft

Millennium Square, Bristol Harbourside

Millennium Square by night

We were back home by lunchtime yesterday, ready to welcome our afternoon guests for tea. We got to know Doug and Diane and their daughters when they rented the house next door to us back in 1998, while Doug was visiting from the States to do some academic work at the University.  We have kept in touch ever since.  We were delighted when they managed to fit in a flying visit to Oxford before returning to California today after a holiday in Europe.  In one of those wonderful coincidences, it turns out that Doug and Diane live around 30 miles from Carolyn and Gerry, two of our new American friends that we had met in Budapest. Small world!

One of our fellow bloggers, Tess, mentioned today how you learn to plan three months at a time when you are a meso sufferer, and how much you can pack into that time window. With trips to Budapest and Bristol and meet ups with so many buddies, it feels like we have crammed a month into a week!  However, it's good to be home and we need some time to catch up with the everyday stuff and news from the other meso warriors....not to mention all those photos to look at and process!  

Big hugs to all our friends, especially those on chemo, waiting to start chemo, waiting for the results of chemo, or just having a tough time.  We have been very lucky in recent months. Our thoughts are with those of you who have not been so fortunate.  xx