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

Virtual friends

Shortly after Steve was diagnosed with mesothelioma in June 2009, a friend in Plymouth sent us a press cutting about Debbie Brewer - a fellow mesothelioma sufferer who had achieved good results with a treatment called "chemoembolization" at a German clinic.  We googled Debbie by name, made contact and were delighted when she responded quickly, full of encouragement, helpful information and support.  

Although I had joined Facebook at the end of 2007, the account lay dormant until August 2009 when I posted a link to this blog which was found by another carer, Heather, whose husband had mesothelioma. That started the world of "virtual friends" ball rolling for us....

I'm not sure when we became part of the facebook meso warriors and others associated with the disease and raising awareness of the dangers of asbestos.  However, Debbie was instrumental in starting up and/or introducing us to the various groups in the UK and overseas (especially in Australia and the USA), and now the news from these groups and their individual members are part and parcel of our daily lives.

Along the way we have found fellow meso bloggers and have got to know them and their families in the virtual world - Mavis and Ray in Kent, Tess also in Kent, Jan "up north", Amanda and Ray in the home counties, Lou and Steve in different parts of Australia.  We follow the blogs and the postings in the groups, riding the roller coasters of each other's lives, sharing the good times and trying to offer what support we can through the difficult times.  The good thing about the virtual world is there is usually someone there 24/7 if you need a shoulder to cry on or some words of support and encouragement.  

Sadly many of the meso warriors, including fellow meso bloggers, have succumbed to the disease along the way - Julie Bastian and Anita Steiner in Australia, Ronny White and Debbie Brewer in the UK.  It's heartbreaking but, at the same time, inspiring to read their last few blog posts and to see how courageously they and their families managed to hold things together in very, very difficult circumstances, sometimes aware of - and at peace with - the end of their time approaching, others fighting to hold on to life as long as possible.  We felt for them all....

Sometimes we have the chance to get together with virtual friends in the real world.  It's amazing how easy and rewarding it feels to meet face-to-face after you have been involved with each other's lives online.  We have wonderful memories of meeting Debbie for lunch whilst staying in the west country a couple of years ago.  We've enjoyed meeting others at the Meso Patient and Carers day events in London and more recently, Leicester including fellow bloggers Mavis and Ray in 2011, and Tess and Alan this year.  

Although we have been part of the meso communities on Facebook since 2009, it wasn't until October 2011 that I started to get involved socially with fellow photographers who posted images on the same websites as me.  I think I was afraid of having to explain to people who only knew me through photographic images, how our lives were totally unpredictable, dictated by the constraints of living with an incurable cancer and rarely looking beyond the next hospital assessment - at most three months into the future....

In the end, I poured it out in a post on my occasional photo blog (read it here ) and put a link to the post on the website where I had been regularly sharing my photos.   And then I started accepting friend requests from fellow photographers who, by now, had some idea of where I was coming from.  

In the same way that virtual friends in the meso community had become real friends, we began to meet up in the real world with photographers who had previously only been a name below a set of images. Giuseppe in Rome last February and more recently in London; Marisol in Madrid earlier this year; and a group from 1X.com in London a couple of weekends ago, including some who know about Steve's cancer and others who do not.  It's been wonderful to put names to faces and enjoy good company!

By the time I post again, we will have enjoyed meeting up with some more of our virtual photography friends in a place we will be visiting for the first time.  Another adventure and more names we can put animated faces too in the real world!  

In the meantime, here's a virtual hug for all our virtual meso warrior friends especially those who are going through tough times and for all our other friends - virtual and real world - who we hope we will see again soon, before scanxiety sets in as the date of Steve's next assessment approaches in December...

Now to finish packing!

Mesothelioma Patient and Carers Day 2013

You will probably not be surprised to hear that our particular interest in last Saturday's conference was the update on clinical trials, the talk about the role of radiotherapy in treating mesothelioma and case studies of symptom control.  

Perhaps selfishly, we were hoping to hear good news for meso warriors and bloggers like Steve, Mavis, Lou, Tess and Jan who have far outlived the "median" survival rate, already have two or more chemo regimes (and in some cases, major surgical interventions) under their belts and are looking for ways forward from here on in.  

I have to say, there was not much to get the pulse racing from the speakers in that respect.  It was the longer term survivors who got up and spoke at the conference that got the heart thumping.  People like Graham Sherlock-Brown (diagnosed in 2002 and still going strong); William Burleigh (Burley?) who will have survived 15 years post-diagnosis by the end of this year; Alastair who was diagnosed in 2008 and Chris, a 9 year survivor, who provided living proof not to give too much weight to survival rate statistics.  Not forgetting Steve, who stood up to give his message of hope!

So much for the overview....here are some random things that various speakers highlighted which caught my attention

Amrita Bajaj : Scans and X-rays in mesothelioma
Although considered a rare cancer, more people die from mesothelioma each year than as a result of cervical cancer, melanoma and endometrial cancer...all of which have a much higher public profile.  

Malignant mesothelioma is distinguished from benign disease because it

• surrounds the whole lung with a "rind" which can include nodules
• has pleural thickening greater than 1 cm
• involves activity in the mediastinal area (the central part of the chest between the lungs)

MRI scans have a higher sensitivity when it comes to identifying chest wall invasion.

PET scans show up "hot spots" of active disease.

Even so, it is still very difficult to "stage" mesothelioma i.e. establish how far the disease has spread and therefore what treatment is appropriate for the individual.

I found it rather difficult to follow this talk mainly because of the speed of delivery, especially towards the end when Amrita was running out of time and skipped rapidly through slides including several which looked potentially interesting from our point of view.  Amrita is clearly very knowledgeable and experienced in this area of expertise, but a bit more thought about the audience's needs and expectations might have resulted in a more targeted and succinct presentation.

Jeremy Steele: Oncology Trials Update

This talk was meant to be delivered by Professor Dean Fennel, University of Leicester who was unable to attend so Jeremy Steele spoke instead. There was a mix up in the slides which appeared to put JS in a bit of a pickle.  As a result, the first part of the talk didn't cover upcoming clinical trials, just went over why the disease is so difficult to treat with surgery and radiotherapy due to the way the cancer grows all round the lung and its proximity to vital organs and major blood vessels which makes "stripping out" very risky.  

More interesting from our point of view was how researchers are now looking at different ways of using chemotherapy to combat the disease by

• blocking cell growth (ie stopping the cancer growing out of control) using blockers such as MTOR/P13K
• using FAK inhibitors to target the loss of the NF2 protein Merlin which tells cells to switch off, stop growing and kill themselves
• exploring how genetically modified T-cells can be used to address the immune system's failure to recognise and kill cancer cells
• starving cancer cells of the key nutrient they need to grow, but leaving healthy cells alone (active substance L-Asparaginase)

After lunch, the slide problem had been sorted out and we were told a bit more about the clinical trials associated with the research outlined above:

• Cancer Research UK funded MESO 2 trial based in Leicester which opened in late August and is due to close at the end of January 2015.  It involves the use of ganetespib with pemetrexed and cisplatin. Ganetespib is a type of biological therapy which stops the signals that cells use to grow and divide.  This trial is only for those who have not previously been treated.  More details here (will open in new window) 
• COMMAND (Control of Mesothelioma and MAiNtenance Defactinib).  Defactinib is a FAK inhibitor which disrupts communication between cells to prevent mesothelioma cells from migrating and forming new tumours, thereby preventing metastasis and helping keep the cancer under control.  The trial is being lead by Leicester but will be rolled out worldwide, including other bases in the UK.  More details here.  This trial is only for people with one prior chemo regime consisting of four cycles of pemetrexed and cisplatin or carboplatin and documentation to confirm an ongoing response to this treatment
• VIM Phase II trial of vinorelbine as second-line therapy for people with mesothelioma.  Vinorelbine is an alkaloid which stops cancer cells dividing and consequently blocks the growth of the cancer. You can find out more about the trial here. The results from this trial will also help those whose cancer is due to genetic susceptibility.  The BRCA-1 gene produces proteins which suppress tumours.  If the gene is harmfully mutated, it cannot produce the proteins needed to carry out this vital role. There is a close relationship between the effectiveness of vinorelbine in inducing cell death (apoptosis) and the expression of proteins by the BRCA-1 gene.  This research will help evaluate the BRCA1 gene as a predictive biomarker for mesothelioma which in future will help doctors produce a personalised cancer care plan for individual patients

Neil Bayman: The role of radiotherapy in mesothelioma

Radiotherapy is used in three ways to treat mesothelioma

• prophylactic - to sterilize the tracts/ports where drains have been inserted into the chest and thereby reduce the chance of mesothelioma seeding into these areas. This procedure was based on a small trial in France and is currently given routinely in the UK.  However, there are some doubts now about whether it is worth doing, given the small size of the original trial sample. Two new trails are currently underway in the UK to assess the effectiveness of the procedure:  the PIT trial (more details here) and the SMART trial (more details here)  Steve had this procedure after pleurodesis and suffered no nasty side effects (read the blog posts in July 2009 if you want to know more).
• Post operative or adjuvant radiotherapy - usually carried out after surgery.    However, it rarely happens these days as the MARS trial (a pilot study which looked at the effectiveness of the EPP operation in which the affected lung, diaphragm and heart covering are removed) found that people who had the operation did not live any longer than those who didn't (the opposite in fact). Proton beam therapy is better at sparing normal tissue and targeting cancer cells and may be helpful in future for those diagnosed early, without metastasis
• Palliative radiotherapy - can help reduce pain (50-60% patients report an improvement). A new trial (SYSTEMS II) is proposed to help determine the optimum doseage
• CyberKnife was mentioned in response to a question - this is a very targeted beam which can be used to treat very small, well defined cancers. Neil did not consider it helpful for mesothelioma patients because of the way the cancer develops in sheets around the inner pleura lining the lung.  I'm still unclear why it cannot be used to target well-defined nodules of meso in the pleura, lines which can develop along operation tracts or "fingers" of meso which can grow into the chest wall, through the rib cage...
• Cryoablation - one member of the audience tried to ask a question about this form of treatment but referred to it as cryogenics.  The panel did not seem to know much about it, even though many of us in the audience had read about Jan Eggerton's experience of this treatment in the States....Jan, perhaps you should enlighten JS?

Mesothelioma UK:  Liz Darlison

Liz encouraged everyone to get involved with the NIHR to help ensure that clinical research studies reflect patients needs and priorities.  More details here

It was also good to see Meso UK's fundraisers get the recognition they deserve in a short but moving slide presentation! 

Luke Feathers: Symptom Control

Using an anonymous case study, Luke talked through the issues facing mesothelioma patients and suggested various ways of dealing with breathlessness, coughing and pain as well as the benefits of advance care planning and the need to deal with psychological and spiritual care needs when "hoping for the best but planning for the worst".  

He also highlighted the value of carers in a practical way, for example keeping a diary or record of drugs prescribed and medical appointments/interventions.

The Legal Panel Alida Coates and Ruth Davis

Ruth and Alida used a case study to show how a straightforward mesothelioma claim case can be handled efficiently under the current legal system and compared this approach to the timescales and steps proposed by the Association of British Insurers (ABI).  Needless to say, the proposed ABI regime is more complicated and time consuming and appears to be designed to string the process out as long as possible in the hope that claimants will give up or accept the first offer that's made, given the poor prognosis most receive on diagnosis....

Liz Darlison: Ten Top Tips

1. Knowledge is power - seek out trustworthy sources of information; learn as much as you can; find out about both the disease and treatment options; be aware of your entitlements; be aware of the National Guidance and Standards.  You can access the Mesothelioma Framework 2007 here  
2. Develop a Team - you are the boss; you are in the driving seat; know your key worker; identify your responsible consultant; have regular contact with your GP; have a buddy/partner to help you
3. Communication - don't presume things have happened; maintain a record of drugs/dates; tell the doctor what you want to know and what you don't want to know; use an accessible source, probably your key worker; keep information flowing; communicate by e-mail and text as well as phone calls and letters; don't wait for an appointment if you are concerned
4. Access expertise - ask informed questions; ensure you have continuity in consultations, ask to see the same doctor every time to build up a relationship; ask for or have an advocate 
5. Second opinions - rarely refused, but will take time and may delay treatment; if confused, don't be afraid to ask the GP or consultant to go over things again and explain; if you want to see another consultant, your GP will make the request; consider taking part in a clinical trial; talk and network using social networking sites, reading or writing blogs, joining a generic group; maybe attend the CureMeso conference in the States in March 2014?
6. Exercise - crucial; use it or loose it
7. Change- ill health changes your life; be prepared to change
8. Hope - vital; seek it out; if you have it, share it; avoid things that destroy hope; "once you choose hope, anything is possible" 
9. Emotional Self - don't ignore your emotional well being; there is a range of support available, use it!
10. Live - write the bucket list; travel; take a break from treatment; manipulate your appointments to suit your life; use your key worker and plan ahead; remember Mesothelioma UK is there to help you!

I understand that many of the presentations outlined above will go on the Meso UK website in due course.  I do hope so - it's not always easy to take notes with some of the presentations.  I also hope that my summary above, based on those notes, is accurate.  If any other attendees spot any errors, please let me know so that I can correct!  

In the meantime, I hope this will give you a flavour of the day.  For us, perhaps the most heart-warming thing was meeting other meso warriors, especially fellow blogger Tess and her husband Alan, as well as those we had met in previous years who are still here, living with not dying from, mesothelioma.  I hope that we will all be there again next year, including Jan and Mavis and the others in the Facebook Meso group who couldn't make it this year as they were too poorly.  And Debbie Brewer was there in all our thoughts x

Miles and smiles :-)

This time last year Steve was about to start chemotherapy (his second regime since being diagnosed with mesothelioma in June 2009) and for the next six months or so we went into hibernation.  Time revolved around hospital visits and managing the side effects of treatment; our travels were curtailed and life was more of a challenge than a bucket of laughs.....

A year on and we are back to enjoying life to the full.  It's been a busy week getting out and about and be sociable; lots of miles and smiles including...

.....a trip to London to meet up with fellow photographers, where I enjoyed putting faces to names and taking a few pictures....

Parcours on the South Bank

....a trip to Bristol to visit our son Jack and Steve's mum, now approaching the first anniversary of moving into a care home after being hospitalised for many weeks following an infection in 2012...

.....a trip to Windmill Farm in the grounds of Waddesdon Manor to visit the wonderful modern building housing the Rothschild archives and some choice pieces of art, which is only open to the public on rare occasions....

Meeting Room, Windmill Farm, Waddesdon Manor

.... a trip to Leicester yesterday for the Mesothelioma Patient and Carers Day, where we met up with some of the meso warriors and their partners, including Tess and Alan, Stephen and Lesley, Diane (although we didn't get to talk to her partner Mike) plus William and Anne from Plymouth...

Tess and Steve

It felt rather strange being there without other familiar faces, especially fellow bloggers Mavis and Jan; many of us felt Debbie's absence keenly, I'm sure.  For those of you unable to get there, I'll write up some of the key points from the conference in my next blog....

.... out last trip was very short, just along the Thames Path to The Punter, our local gastro pub, where we had lunch today with daughter Katie (who has been staying with us this weekend) before she headed back to London...

More miles and smiles to look forward to in the near future, but that's for another blog!

A big hug to all the meso warriors out there at whatever stage you are at on your journey.  May you have many smiles, even if you can't travel many miles in the coming weeks for whatever reason x.

A New Term

Although it's been a while since our lives revolved around the academic year, September still feels like the start of a new term and all that entails - reunions with old friends and making new ones; revisiting a familiar place or perhaps getting to know somewhere different; starting a new challenge or going forward on a work in progress.  Fresh, new, exciting times ahead in the new term, even though it can be a bit scary at times.  

And that's how it felt for us over the last few weeks.  Our new 3 month term of life got off to a good start with copy of the letter sent by Steve's hospital consultant to our GP.  It was a bit like getting a school report at the start, rather than the end, of term - we knew from the assessment earlier this month that Steve's condition is still stable, but it was reassuring to see the confirmation in black and white:

"Status: He remains well and performance status 0 (i.e. fully active and more or less as he was before his illness).  Maintains active physical exercise.  On examination he appeared well with no palpable lymphadenopathy (i.e lymph nodes do not appear to be enlarged). Expansion of the chest was equal.  No clinical evidence of recurrent disease.   

Test Results: Chest X-ray: stable appearances  

Assessment: Stable disease"

Until a cure is found for mesothelioma (and it WILL happen) this is as good as it gets!

Since the assessment on 5 September, we've had a very sociable time.  

Our son Jack came to stay for a few days.  We really enjoyed his company, had a meal out to celebrate his birthday, watched the excellent German cult movie "Run Lola Run" and visited All Souls College which was open to the public as part of the Oxford Open Doors weekend.

Codrington Library, All Souls College

We spent a very pleasant morning over a coffee catching up with news from John, Oxford's former Conservation Officer with whom I worked for many years.  Ironically, he now finds himself on the receiving end of planning and conservation advice (from a different local planning authority) and is not very impressed by the experience...

We had a day trip to London last week to meet up with our Italian friends Giuseppe and Maria Adele.  We had last seen them in a cold, snowy Rome in February 2012 where we had been overwhelmed by their kindness and generosity.  This time round, it was our turn to play host - albeit for a few hours - with lunch at Tate Modern, followed by a stroll over the Millennium Bridge and coffee overlooking St Paul's cathedral where we said our good byes.  It was lovely to see them again and we have plans to meet up again soon.  

Maria Adele, Giuseppe and Steve at Tate Modern

There was a full house here last weekend.  Our friends Helen and Rob arrived from Leeds on Friday night, stopping off in Oxford for a wedding on Saturday before moving on to London on Sunday and flying to the States on Monday.  We were joined by more friends on Saturday - Anne and Colin up from Chichester and Ruth, just back from a visit to Croatia - so lots of mutual news to catch up with over a slap-up tea, followed by drinks and nibbles in the evening and into the wee small hours.  We burned off some of the calories after breakfast on Sunday with a walk along the Thames to the Trout Inn at Wolvercote for a pint, then home via Port Meadow for more food, eventually saying our farewells late afternoon after a very enjoyable weekend.

Steve, Rob and Helen post-pint at The Trout Inn, Wolvercote

Helen and Rob were the first people to stay in our new guest room - now carpeted and (mainly) furnished. The old sofa bed will be the last thing to go and, once the space has been cleared, there will be a proper bed for our next staying visitors.  All we have to do now is bring the rest of the house up to the same standard!

Somewhere comfortable for our guests to sleep :-)

In between all this socialising, we have been backwards and forwards to Ikea a couple of times buying smaller items for the guest room; assembling flat pack furniture; putting a few bits and pieces on e-Bay as part of the ongoing de-clutter, and progressing our plans for October (although we still don't have an appointment for Steve's next scan, so I hope there won't be a clash). Flu jabs are booked, so that's another thing crossed off the "to do" list.  

I even managed to fit in a work-related conference on Planning for an Ageing Population (a bit of enlightened self-interest there).  However, an event like that highlights the downside of our personal circumstances. While the UK population as a whole is living and staying healthier for longer, like others with mesothelioma, Steve's normal life span will be cut short by a disease which could have been avoided had asbestos fibres not been released into the air in his presence.  That said, this knowledge encourages us to live for the day and make the most of the time we do have together.  And we certainly do that!

On the photography front, I volunteered to step in as a replacement judge for the photographic section of a local village show.  We had a fun time watching others judge the fruit, flowers, vegetables and cake classes, as well as looking at the photos.  Living in the city centre, it's easy to forget that Oxford is in the heart of a very rural area. Going to a village show was a bit like walking into a real life episode of the Archers (for those of you outside the UK, that's a very long running radio programme based on the "everyday story of country folk").

Other good news on the photography front - one or more of my images will be included in Portfolio 3, published by the Royal Photographic Society this month. The complementary copy of the book has yet to arrive, so I still don't know which image has been included.  However, I do know that two of my photos (below) have been selected for the RPS International Images for the Screen exhibition which opens in London on 31 October.  

Strings and Shadows

The Finger Points

We'll be going to the launch, so that's something to look forward to next month.

We were invited to another launch this month - this time a book "On foot from Oxford Castle to St Giles", which was written and illustrated by Malcolm and Edith, friends I used to work with at the City Council. That event coincided with the last day of St Giles Fair here in Oxford - a street fair held on the first Monday and Tuesday in September in one of the city centre's most historic streets which is closed for the duration. The contrast between the fair and its surroundings couldn't be stronger!  And its very photogenic... 

While we've been enjoying life and having fun, other members of the meso community, including many of our fellow bloggers, have been having a tough time with bad news, pain and dealing with the debilitating side effects of chemotherapy.  Sending you strength and much love x

Assessment day

The elusive pink slip for Steve's X-ray didn't arrive in the post, so we hoped it would be waiting for us at the reception as promised, when we arrived at the hospital this morning for Steve's assessment.  To our delight and relief, there it was, ready and waiting for Steve when he checked in at the day clinic reception on arrival.  

As it was close to the appointment time, I returned to the waiting area in the day clinic while Steve had his X-ray. We usually have to wait a 20-30 minutes, sometimes longer, before being called in from the waiting area to the consultation room.  Today, Steve's name was called right on time - while he was still in Radiology - so we had to wait for the next available slot to see the consultant.  

The last few assessments have been carried out by one of the registrars.  Today, to our surprise and delight, it was Doctor T himself - always relaxed and able to put us at our ease.  He didn't keep us waiting in suspense. He told us that he'd looked at Steve's X-ray and could see no discernible change. On physical examination, the chest sounded good. If you read the blog regularly, you will know that Steve is very fortunate to have no other symptoms usually associated with mesothelioma - no pain, not even the breathlessness that he was aware of a couple of years ago.  

His weight is down a little on this visit, which is easily attributed to being weighed today wearing a T shirt and cut-offs rather than the usual jeans and jacket, and the fact that we've had a bit more physical exercise recently, refurbishing the spare room.

Unlike most hospitals which give meso patients CT scans every three months, up to now, ours has only taken scans as part of a chemo regime to assess response to treatment. The rest of the time, they use X-rays which deliver a lower dose of radiation, and only follow up with a scan if the X-ray shows a noticeable change in the cancer.  

I was therefore a bit concerned when Dr T said he would like a CT scan before Steve's next assessment in December, and queried whether this was because of something he'd noticed on the X-ray. We were reassured by Dr T that there was nothing on the X-ray to cause concern. He just thought it would be about time by then for another scan to compare to the one taken at the end of the second line chemo regime which finished earlier this year. 

We had a short discussion about scans and the fact that being more detailed, they can show up areas of meso activity not visible on the X-ray.  Dr T said that some people prefer not to know this level of detail, especially if they are feeling OK otherwise.  Did Steve want a scan, bearing this in mind?  The answer was yes.  So that's what happens next.  

The appointment will probably come through in the post in 2-3 weeks time.  If we want to know sooner, we can ring radiology in a week or so and enquire about timescale, so we don't have to hang around waiting for the appointment before sorting out our plans for the next three months.

The pink slip of paper requesting a scan will be filled in today, photocopied by his secretary to "prove that the request was made" as he said, then taken to radiology to be processed.  So much for the paperless office!

And so the next three months has opened up for us and we can look forward again.  Time to firm up those "pencilled in" arrangements and make plans!  Lots to look forward to in the coming months to make the most of the time between now and the next appointment on 5 December.  

As Steve said as we walked out of the hospital, even if the forthcoming scan indicates meso activity which justifies further treatment, it's unlikely that chemo would start straight way.  All being well, he will be able to enjoy Christmas 2013 and celebrate with a bottle (or two) of fizz, unlike last Christmas when he was four cycles into a six cycle regime of Alimta and carboplatin and not feeling so great.  

Which reminds me - time to put the fizz in the fridge for tonight's celebration and make the most of the sun on what looks to be the last day of summer here in the UK.  Raise a glass with us this evening!

Celebration of Lights by Talha Tariq

Here's hoping that other meso warriors have good news today and next week.  Fingers crossed for all of you xxx

keeping busy as assessment day approaches (and the saga of the pink slip...)

When Steve was diagnosed with mesothelioma in June 2009 and underwent his first regime of chemo, our priorities changed.  We were in and out of hospital so much on the Velcade drug trial that housework chores were reduced to the minimum necessary to stay clean and healthy.  House and garden maintenance was put to one side, only to rise to the top of the "to do" list in an emergency.  

When the drug trial finished and Steve had recovered for the side effects of chemo, the priority was to get out and about visiting family and friends, enjoying new experiences and seeing a bit more of the world - those places you always plan to visit but never quite get round to organising the trip...And that's more or less how things have carried on for the last four years, making the most of the here and now!

However, our neglect of maintenance has taken its toll on the house and garden to the point we felt we needed to take action.  And that's what we've been doing these last few weeks - clearing the spare bedroom;  dismantling the old play/sleep platform; cleaning; plastering (not us - a job for Ian the plasterer); prepping woodwork and priming bare plaster; painting, painting, and more painting - ceiling, walls, window, skirting boards, fire place surround....

Today, the door was taken down and trimmed ready for the carpet fitters on Monday.  Some larger items of new furniture are on order and will be delivered the week after. The spare room transformation is underway and progressing well, so our next staying guests should be enjoying the results in a few weeks time.  

All this activity has meant that we have been too busy by day and too tired by night to dwell on Steve's assessment on Thursday.  So much so, that we had forgotten that Steve has not received a "pink slip".  This is not as you might imagine, an item of underwear!  It's a sheet of pink paper the consultant gives to the patient at one assessment which is taken by the patient to radiology at the follow up assessment so that the doctor has an X-ray to look at and compare to previous X rays before the subsequent consultation and physical examination.

Most meso warriors seem to have a scan every three months or so to monitor their cancer.  Our local hospital seems to be one of the few which relies on X-rays to inform the quarterly assessment.  Scans are only used to follow up any signs of disease progression.  When questioned why, one doctor said it was because scans expose the patient to 20 times the amount of radiation compared to an X-ray.  

However, the last registrar we saw back in June asked about Steve's scan regime and seemed surprised when we told him it was usual to have an X-ray, rather than a scan. He said he would follow this up with the consultant.  As a result, Steve was not given the pink slip to take away, ready to bring back to the hospital for an X-ray prior to the next assessment in September.  

The follow up letter to the GP (copied to us) said "this gentleman remains very well in himself and has recovered from the toxicities following his chemotherapy.  We plan to see him in three months time with a repeat chest X ray beforehand, but should he become symptomatic we can organise a CT scan."  

At that point, we contacted the hospital to ask to be sent a "pink slip" to take to radiology at the September assessment.  We waited so long for the pink slip to arrive, we eventually forget about it until a few days ago. Another phone call, another explanation, and still nothing in the post even though the assessment is on Thursday.  If nothing arrives tomorrow, then it will be another round of phone calls to make sure radiology is expecting Steve on Thursday morning and will do his X ray in time for the doctor to have a good look at it before the appointment.  

It beats me why a modern cancer centre which only opened in 2009 has such an archaic system.  Why does a doctor in the day clinic have to give a patient a bit of paper to take to the radiology department just down to the corridor when the X-ray is already booked in electronically (or I assume it is - they seem to be expecting Steve when he arrives). He still has to go through all the security checks to confirm he is who he claims to be...It just seems to be an unnecessary extra step for the patient who has to keep the form safe for 3 months and then remember where it was put for safe keeping, not to mention all the trees that went into making the pad of pink paper....

Rant over.  I thought I was dealing well with the stress of the approaching assessment, but may be not as well as I thought!  However, getting stuck into a DIY project does seem to take the mind off things, as well as being productive on the home front.  If we did a project for a couple of weeks before every one of Steve's assessments, that would be a great way to get the house and garden in good condition and combat "scanxiety"!  

We are not the only ones waiting for results around now. Amanda and Ray will hear about his scan results on Friday. Steve in Australia will get his on 12 September.  Fingers crossed for all of you.  Big hugs and positive thoughts to Lou in Australia who is having more chemo this week, and to Mavis in Kent who is determined to finish her current regime of fourth line chemo.  Sending much love to you both.  And a very big hug to Jan and Gary who had to cut short their holiday cruise as Jan is not well enough to continue. She needs and deserves a break.  Here's hoping so much that things work out for you, Jan x. 

Next post will be the results of Steve's X ray and assessment - always assuming that the saga of the missing pink slip does not put a spanner in the works on Thursday....