Sunday 27 October 2013

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!

Monday 21 October 2013

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 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

Friday 11 October 2013

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 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!

Monday 7 October 2013

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 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

Sunday 6 October 2013

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.