Monday 27 February 2012

A getting much better sort of week

Last week started on a bit of a down note, dominated by death and funerals and compounded by a phone call from the doctor who seemed to be reluctant to sign a form which would help Steve to renew his Disabled Living Allowance (DLA), should he feel the need to do so before it expires later this year.

But things got better as the week progressed.  Wednesday was cheered up by an e-mail from Giuseppe, our friend in Rome, who sent us a lovely photograph of us just after we had thrown our coins in the Trevi fountain.  

Together at the Trevi fountain, Rome, 12 February 2012

As we are usually behind the camera, we have very few images of both of us together, so this one will be treasured. Thank you Giuseppe!

After years of putting up with a lower back problem, encouraged by Steve, I finally plucked up the courage to see an osteopath on Thursday.  Not only did he identify the source of the problem - given a bit of time, he can also manipulate my rotated hip back into alignment and that process has now started.  We also managed to fit in a useful meeting with an accountant, which will help us decide how best to deal with my new role in Guernsey which starts officially on 1 March.

Friday brought more positive news.  Having read advice in an e-mail from Mesothelioma UK, the GP now says she would be happy to do the paperwork that will help smooth reapplying for DLA, should Steve feel the need to do so in the course of the next few months.  A big thank you to Liz Darlison of Mesothelioma UK whose support was invaluable, and to our GP who was open-minded enough to take it on board.

Saturday was the social highlight of the week - we were joined for lunch by a group of friends who came together in Oxford as students in the late 1960s and have kept in contact with each other since.  Although a bit cramped, it was lovely to sit around the table together, catch up on each others news and drink a toast to ourselves and our absent friends.  Thank you everyone for making it a special occasion!

There is another very special occasion to look forward to at the end of this week.  Steve will be 65 years young on Friday and there will be another gathering at our house to mark this auspicious event.  More of that in a future post!  

It seems to have been a good week all round for many individual meso warriors as well as the meso community worldwide.  Debbie in Plymouth has received a Certificate of Recognition in the Tesco Mum of the Year 2012 Awards and will be given the Alan Reinstein Award by the Asbestos Disease Awareness Organisation (ADAO) for her commitment to education, advocacy and support to countless mesothelioma patients and families.  Well done Debbie!

At long last, Mavis and Ray in Kent enjoyed a rail trip and a special meal on the Orient Express, a Christmas present from her family, which she has bravely fitted in between chemo sessions.  Well deserved Mavis - and many treasured memories for you both!

Amanda and Ray are clearly enjoying themselves, after good scan results earlier this month.  Jan has also been out and about, walking the dogs in the woods at the weekend. We need to follow their good example and take more exercise in the fresh air!  

The repercussions of the Eternit trial in Turin continue to reverberate around the world, following the conviction of a Swiss tycoon and a Belgian baron for negligence resulting in over 2,200 asbestos-related deaths in northern Italy.  The deaths were caused by fibres being spread from the Eternit factories which made products with asbestos, such as roof coverings and pipes, up until 1986 some six years before asbestos was banned in Italy. 

I have been following the trial from here in the UK and it casts a long shadow - I still have vivid memories of handing bits of Eternit asbestos cement "slates" submitted for approval as roofing material samples for building schemes, back when I worked at Oxford City Council in development control.  After watching a TV documentary about asbestosis which was shown around that time, one of my colleagues flatly refused to handle or approve the use of this material and was chastised for her brave stand by the man in charge. But in retrospect, how right you were Barbara.  

As we look forward to Steve's birthday, our thoughts are with Tess who has had a rough time recently and three hospital visits to deal with this week; Jan, who is due to get her scan results by the end of the week; Mavis who is back on chemo today and Debbie who is due to return to work, part-time on Thursday. Stay positive people and remember, we're all in this together.  

Wednesday 22 February 2012

the shared experience and breaking the taboo

Those of us whose loved ones are diagnosed with cancer (or any other life-threatening illness for that matter) do whatever we can to support our afflicted partner, family member or friend.  However, we can only imagine how it must feel to be in their position.  While people respond in different ways when faced with such devastating news, those who find themselves fighting the same disease have a common bond outside the ties of family and friendship. It seems to me that this shared experience can be the source of a special kind of understanding and support for our loved ones which we cannot provide. 

And so it was between Steve and John, whose funeral we attended yesterday. They had only met a few times since both were diagnosed with cancer, but whatever the occasion, they always seemed to find some quiet time to talk together.  I know that Steve drew much comfort from these discussions and was inspired by John's positive outlook and approach to life, something which featured strongly in the tributes paid to him at yesterday's service. 

There is never an easy time to discuss how we would like others to mark our deaths and celebrate our lives before moving on with their own.  Steve and I have skirted round the subject on more than one occasion, usually in a black-humoured, jokey kind of way which keeps it at a distance. There is still a bit of a taboo feeling about such matters, as if you are tempting fate by even thinking about death.  But it will come to all of us sooner or later; perhaps we just need to face up to it, deal with it without dwelling on it, then get back to enjoying life while we can.

Not surprisingly, the subject came up again yesterday at the gathering after the funeral.  Before he died, John had suggested the music he would like to have played at the event - a wonderful eclectic mix of classical, rock, jazz and blues pieces which reflected his personality and taste in music, and provided a fitting tribute to his life. It was also a great relief and comfort to his family that he had made his choices known them while he was still living, rather than them having to second-guess what he would have liked, after his death.

Without wishing to sound morbid, we have taken a cue from John's lead - each of us thinking about a quiet contemplative piece we would like to start our funeral service, something a bit different in the middle, and something to lift the spirits at the end.  It's rather like choosing your desert island discs - an almost impossible task if you have a wide taste in music - but we've made a start and broken the taboo  I'm not going to spill the beans now, that would spoil the fun...I hope we'll both we have plenty of time to change our minds in future, if we choose to do so. 

However, whilst difficult, simply beginning this process has been strangely liberating in a weird kind of way. As Steve says, his only regret is that when the time comes, he won't be there to enjoy it!  

So much for planning for events in what we hope will be in the distant future.  Time now to start getting prepared for this weekend when we will be joined for lunch by a group of friends from our student days, a pre-birthday meal for Steve in advance of the family event the weekend after. Music not a problem for this event - we'll just put the i-pod on shuffle and see what comes up - but we do need to think about food to make this a shared experience worth remembering for the right reasons!

Last but not least - happy birthday to Ray in Seasalter! Have a wonderful day with Mavis (and Louie the dog).  We look forward to sharing the experience on your respective blogs!

Monday 20 February 2012

Back to life, back to reality

After the high of last week in Rome, this week it's back to life, back to reality....

...Yesterday, I learned that the mother of one of our close friends had just died after living the last few years with Altheimzer's disease. Today the funeral takes place of of Patrick, whom I used to work with at Oxford City Council. He died from a brain tumour after being diagnosis with advanced metastatic prostate cancer in May 2010. Tomorrow we are going to another funeral; my cousin lost her husband John to prostate cancer, first diagnosed in February 2009.  We are thinking of you all, and sending our love.

If nothing else, all this sad news brings home to me just how lucky Steve has been, still enjoying life two years, nine months and four days after being diagnosed with mesothelioma in June 2009.  

Memories of that time came flooding back to me yesterday, when a large brown envelope arrived in the post containing a form to reapply for Disabled Living Allowance (DLA), which runs out in April.  

The DLA is paid automatically to everyone diagnosed with mesothelioma; this type of cancer is usually so aggressive that 60% of those with the disease do not survive more than a year after diagnosis.  Given the poor prognosis and the fact that there is no known cure, it is considered to be a terminal illness.  

For those classed as terminally ill, the DLA payment is fast-tracked under "special rules" where the application is supported by a form signed by a doctor to confirm the diagnosis.  We still have the patient's copy of Steve's original mesothelioma diagnosis form.  However, being unsure whether he needed to get a fresh one to support the renewal application, I phoned the Helpline number on the covering letter for advice. 

Having explained why I was ringing, there followed a rather strange conversation. I was told that the "special rules" form was only for people who are terminally ill and not expected to live more than six months. As my husband is still alive over two years later, the doctor should not have filled in the form back in 2009 when he was first diagnosed. Hearing such words was not pleasant.  It felt like the person at the other end of the phone wanted me to feel guilty that Steve is still alive, in spite of the odds being stacked against him.  

I explained that mesothelioma is incurable and usually aggressive; my husband was one of the lucky ones who had lived longer than the median mesothelioma survival rate. However, as the person on the other end of the telephone clearly had no idea how to deal with someone in Steve's position, I simply repeated the original question, rather than get into an argument.  Does he need an updated form confirming his diagnosis?  The answer was yes.  So here we go again....

I have to say that Steve finds the whole thing very difficult. On the one hand, he feels uncomfortable about receiving an allowance for a disability which, since recovering from the side effects of chemo, has not hugely affected his ability to lead a "normal" life, or at least as normal as life can be when diagnosed with a terminal illness. On the other hand, he knows that things could change for the worse very quickly and when that happens - as it will one day, inevitably - we will need all the support available, as soon as possible.  Having to live with that knowledge is stressful enough.  The thought of having to go through the bureaucratic sausage machine to ask for help when that time comes is not a nice one.  That's the reason why people with mesothelioma are fast-tracked for DLA under the "special rules".  

Having heard my account of this phone call, Steve did not feel inclined to re-apply for the DLA under the "special rules" and may be not at all, until his health worsens significantly.  However, having looked again on the Mesothelioma UK website at the information on benefits and allowances he is entitled to, he came round to the view that a decision about whether the special rules for terminally ill people should apply to him was the doctor's call, not his.  And that's where we've left it, with the GP. 

The last expert to give Steve a prognosis hedged his bets, stating "On the evidence presently available, I estimate his life expectancy at 2 years, but with a significant chance that he may survive more than 3 years and a significant chance that he may die within one year." That statement was written in April 2010.  I wonder what the doctor will say in now, in February 2012?  

Ironically, the "special rules" DLA form does not require a prognosis, simply confirmation of the diagnosis which is not in dispute...

Apologies for this whinge.  Normal positive service will be resumed as soon as possible.

Thursday 16 February 2012

When in Rome.....

Take a deep breath - this is a long post.  It's been quite a week!

Steve planted the seed of an idea five months ago when he casually asked whether I fancied watching England play Italy at rugby in the 2012 Six Nations Cup - in February, in Rome! Never having visited the Eternal City before, it was too good an opportunity to miss.  But why go to Italy and stay in a hotel just for a few days I thought, when we could rent a small apartment and stay a whole week, including Valentine's Day?  

So we found a small flat to rent in Trastevere on the west bank of the River Tiber, booked our flights and bought tickets for the rugby match on an Italian website way back in October. Then we sat tight, hoping for good news at Steve's hospital assessment in December which would allow us to realise our plans, as we were unable to get travel insurance for Steve so far in advance of the date of travel. Fortunately for us, the gamble paid off! So...if you have been curious about what we've been up to for the last eight days or so, we've been in Rome, doing as the Romans do!  

We watched the film Roman Holiday on the flight to Italy last Wednesday to get us in the holiday mood.  On arrival, we were picked up at the airport, whisked into central Rome and taken to our accommodation, a top floor flat in an old house on a narrow cobbled street, just around the corner from the church of Santa Cecelia, patron saint of music. And it was the bells of Santa Cecelia which woke us up early the next morning for our first full day in Rome - bright sun, blue skies but extremely cold! 

We started with some of the classic sights - the Roman Forum and the Colosseum - then went on the the Capitoline Hill where we found the famous statue of Romulus and Remus being suckled by a she-wolf, followed by a ride in the panoramic lift to the roof terrace of the Vittoriano building, with its wonderful views over the Roman skyline. 

Roman Forum

The Colosseum

Rome skyline from the Vittoriano

Our first day's sight seeing ended at the Pantheon with its spectacular dome, where an ominous sign on the door advised visitors that the building would be closed on Friday and Saturday because bad weather was expected....

The Pantheon

Rome had already experienced heavy snow falls the weekend before our arrival which had more or less closed the city down.  When we arrived, it was still slippery under foot where the snow had not been cleared, so it seems that the Mayor didn't want to take any chances second time round.  

It was bitterly cold that evening when we met up with Giuseppe, a fellow Fotoblur photographer who lives in Rome, who had contacted me when he heard we would be visiting his home city.  Giuseppe took us to one of his favourite bars in Trastevere and insisted on buying Prosecco to welcome us to Rome. How generous!  We got on so well, that we arranged to meet him again a few days later, depending on the weather......

To our relief, we awoke on Friday morning to sunshine and blue skies with no sign of any snow. Our travels that day took us to the northern edge of Rome where we planned to collect our tickets for Saturday's rugby match at the Stadio Olympico box office. But first, we visited MAXXI, a wonderful gallery of contemporary art, designed by UK architect Zaha Hadid, which opened in late 2009.  An exciting place to wander around and have lunch.  

MAXXI interior

MAXXI exterior

So excited were we, that it took a while before we realized that the blue sky and sun outside had been replaced by clouds and rain.  When we did notice the change in the weather, we put off collecting the rugby tickets for as long as possible in the hope that it would improve.  It didn't.  It got worse.  We gritted our teeth and headed off to the stadium in driving sleet, which had turned into a full blown snow storm by the time we emerged from the ticket office.  

We took shelter at the bus stop, blissfully unaware that the bus route we had used on our way there had been suspended as part of the transport system's "Snow Plan". Had it not been for a kind local sheltering at the same stop, we might have waited for hours for a non-existent bus. Luckily for us, our good Samaritan was able to tell us how to get back to Trastevere via bus routes that were still running, and we made it back to base safely. Gluttons for punishment, we braved the snow again that night to eat out at Giuseppe's favourite bar, wondering whether the rugby match would go ahead the following day given the horrible weather conditions.

Saturday dawned cold but bright, so we headed off north again on the bus, this time getting off at the Ponte della Musica where Roman families were out in force having fun in the sunshine, playing in the piles of snow which had been cleared from the bridge's main walkway. 

Playing in the snow - Ponte della Musica
This time we headed past MAXXI to the Auditorium, a complex of buildings dedicated to music, designed by Italian architect Renzo Piano (how apt!) where we had lunch, watching the snow being cleared from the main entrance by a man in bright yellow wellies using a red shovel - very colourful!  

Snow clearing at The Auditorium

The Auditorium

However, as we finished eating the snow started falling again so we spent some more time exploring the building rather than brave the blizzard outside.  The chances of the rugby match going ahead in these white out conditions seemed remote. But unable to check the latest news online, the only way to find out whether or not the match had been cancelled was to make a quick phone call back to the UK to ask daughter Katie to investigate. As she could find nothing to suggest the match wasn't gong ahead, we set off towards the stadium, stopping at MAXXI on the way for a warming cup of coffee, along with other Italian and English rugby fans with the same idea.  

Snow at MAXXI, en route to Stadio Olympico
Then almost on cue, the snow stopped, the sky began to brighten, and everyone started moving in the direction of the Foro Italico, where the stadium is located. The workforce was out on the pitch, clearing snow with shovels and blowers, even as the players were warming up! They had managed to clear all the lines and about half the pitch by the time the match started.  The atmosphere was great - the home crowd chanting IT-AL-IA and stamping their feet so that it sounded like an express train. English fans did their bit with "Swing low" echoing around the stadium every so often. One brave soul even made a public proposal at half time.  I hope she said yes!  The numb fingers and toes were forgotten as the whistle blew for full time, with England in the lead and winning the game.

Steve at the Stadio

The sign says "Clare Morris Will you marry me?  From Mike"
A very public proposal
With 50,000 fans leaving the stadium at the same time it was a bit of a nightmare journey home. There was no sign of the bus we had planned to catch, so we jumped on the nearest one with some space and hoped we could find our way back from wherever it terminated.  We eventually found ourselves in an area of the city we were unfamiliar with, and so started a long, rather circuitous walkabout until we eventually found ourselves somewhere we recognised. Fortunately, we didn't have long to wait before a bus turned up and we eventually got back to base, tired but happy.

Sunday morning dawned bright, but once again bitterly cold. We met up with Giuseppe and his wife Maria Adele at the Pantheon and warmed up with coffee and pastries at their favourite cafe before going walkabout from Piazza to Piazza, via atmospheric streets, learning about the city's history from Maria Adele (born and bred in Rome) as we went along.  

Giuseppe and Marie Adele

The Trevi fountain where you throw in and coin and wish to return to Rome
We threw coins in the Trevi fountain and wished to return one day; we even made it to the top of the Spanish steps, recently cleared of snow, before heading off on the metro to have lunch at Giuseppe's home, where we relaxed for a few hours in excellent company.  

Our Sunday ended with a trip back to Trastevere to visit the African drum and dance group where Giuseppe plays most weeks. Great sounds! 

We finished the evening with a farewell drink together before heading off to our respective homes after a wonderful day. It seems strange now to think that until a few days ago, Giuseppe was known to us in name only, on a photography website.  In these circumstances, to experience such generosity and kindness is indeed a privilege and one which we appreciated greatly. Thank you so much Giuseppe and Maria Adele!

On Monday we visited the Vatican - a city within a city, with its own police, post office, army and fire brigade (the latter on snow clearing duty in Piazza San Pietro).  The queue to get into St Peters was half way round the square by the time we arrived, so instead of waiting in the cold we spent a few hours people watching and trying our hands at street photography before an early lunch. 

Our timed tickets to the Vatican Museums were for 1.30 pm and we spent the next few hours passing about two and a half thousand years of art - painting, sculpture, archaeology, tapestries, gifts to the Pope (including a small flag which had travelled to the moon and some fragments of moon rock, a gift from Richard Nixon to the people of the Vatican City) before entering the Sistine Chapel to marvel at Michelangelo's painted ceiling and the other frescos. 

We also  managed to photograph the splendid 1930s double helix staircase - originally the entrance to the museum complex, now the exit - a classic view which we were keen to capture ourselves.

By the time we stumbled out of the museums, the queues to visit St Peters had all but disappeared so, after an extended security check (if you wear a belt with a big metal buckle that sets off the alarm, make sure it's one you can easily remove....) we entered the basilica and were overwhelmed by the huge scale of the place.  Not surprising really, its the largest church in the world!  We were too late to take the lift to the dome and the viewing terrace, but it was still worth the visit, nevertheless.

St Peter's Basilica, Vatican City
Tuesday, St Valentine's Day, dawned bright and cold again. As if by magic, two Valentine cards appeared, one for each of us!  We are such softies....

Wrapped up well, we headed off to the EUR district via the tram to Trastevere Station, a dry run for our return journey to the airport the following day.  The EUR area was planned as a home for a World Fair in the mid 1930s, but work came to a halt with the onset of World War II. However, some interesting buildings survived, in particular the Palazzio dei Congressi and the Palazzio della Civilta Italiano (also known as the Square Colosseum) both of which are interesting photographically. 

The Square Colosseum

We headed back into the centre of Rome for our Valentine lunch (Pizza Romana - what else?) then carried on to the Palazzio Barberini.  As it was Valentine's Day, the Museum let two people in for the price of one - what a lovely gesture!  We enjoyed walking through the almost deserted galleries viewing the art and climbing the two beautiful staircases at either end of the main frontage, a square one designed by Bernini and a circular stair design by Borromini. 

Later that day, we celebrated our last evening "at home" with a bottle of Prosecco, before packing ready for the return trip yesterday.   

If you ever travel to Rome via Fiumicino (Leonardo da Vinci) airport allow plenty of time for security and passport checks - they seem to take forever, even in February which is hardly a busy time of the year. The furthest boarding gate (used by budget airlines) is a good 15 minutes fast paced walk beyond passport control. We were both panting as we arrived at Gate H9, with just five minutes to spare before it closed, even though we thought we had allowed plenty of time, having checked in online with hand luggage only, and with our boarding passes printed already.  Several others were not so fortunate, arriving after the gate closed and their luggage was removed from the hold before we departed. We heaved a sigh of relief that it wasn't us, as we settled down to watch "Three Coins in the Fountain" on the flight home.  The views of the city in the film which had been so new to us on the way out, were now familiar sights, bringing back happy memories of our week in Rome. We hope to return, but next time without the snow!

Saturday 4 February 2012

Home and away

Since Steve was diagnosed with mesothelioma in June 2009, the occasions when we have been apart for more than a day or two at a time have been very few and far between.  Last week was one of those rare occasions.  

Steve saw me off to Southampton airport on Monday afternoon and I've spent the rest of last week in the Channel Islands learning all about Guernsey planning law, so similar in some respects to what I'm used to, so different in other ways.  Still it keeps the brain active, especially in this freezing weather when I might otherwise be tempted to go back into hibernation.

While I've been away, Steve has been moving forward on the home front.  He has been going through his workroom, sorting out, recycling and filing paperwork and organizing equipment, and in the process finding things he didn't know (or had forgotten) that we had.  Not to mention a clear floor!

He's stocked up on the supplements he takes to help boost his immune system, so no fear of running out for a few more months. He's stocked up on food, so we won't starve if we find ourselves snowed in for a few days.  According to the Met Office, it's on its way but has yet to arrive here in Oxford. Steve has also tied up the last loose end for our February treat next week, so we are now ready for another adventure. Always assuming we are not snowed in...

The adrenalin had run out by the time I reached home yesterday evening, so it wasn't until today that I learned of the death of two more meso warriors earlier this week, Heather and Keith.  Our thoughts are with their families.  

I've also now managed to catch up with other meso warriors blogs.  There have been some traumas and challenges to do with treatment and some good news too while I've been away.  It was heart-warming to read on Amanda's blog that Ray's scan results brought good news - enjoy the next twelve weeks you two! Sending our love and positive thoughts to all meso warriors and their families.  

Now that January is behind us, so is our long stretch of "normal" weeks.  The calender for February and March has some special things to look forward to, interspersed with periods for rest and relaxation, which I have had a tendency to overlook in the past. Perhaps this time, we'll get the balance right!

Having just looked out the window, I see that the snow has now started to fall.  Will it be a winter wonderland when we wake up tomorrow?