the long wait....

After yesterday's afternoon sunshine, today dawned grey and misty. Steve was wide awake by 6.30 am, up and sorting out some money matters before my eyes were properly open. Even so, we left the house later than planned and crawled most of the way to the hospital in the morning traffic jams. Not the best start to Steve's assessment day.  


However, there were spaces in the hospital car park; the X-ray was taken quickly; we arrived at the day clinic well before for his 9:40 appointment and were called in to see the doctor bang on time.  Our spirits lifted a little as we were told we would be seeing Dr Church the registrar, rather than the consultant.  If it was bad news, surely Dr Talbot would be the one to break it to us himself....


However, as time passed we became increasingly anxious, sitting alone in the consultation room - five minutes, no doctor....ten minutes no doctor...fifteen minutes later, still no doctor....oh dear, I thought, the registrar has spotted something ominous on the X-ray and is waiting for advice from the consultant about how to break it to us and what to do next.... 


And then.  At last.  Dr Church appeared smiling, accompanied by a student doctor, and asked whether Steve minded her observing.  My mind flew back to the first appointment I had attended with Steve post-diagnosis in 2009, where the consultant was being shadowed by a teenager on work experience and how I had fought hard to hold back the tears as we broached the subject of prognosis.


But today the atmosphere was different, thank goodness. After first asking Steve how he felt, the doctor didn't keep us waiting on tenterhooks any longer.  There was no sign of any change on the X-ray, the mesothelioma still appeared to be stable.  The physical examination by both doctor and student revealed nothing untoward and as Steve still feels good, he's be signed off for another three months!  No need to go back to hospital until 14 June, unless he experiences any problems in the mean time.  


So here we are, with big smiles on our faces, thinking about what we would like to do in the next three months which will include another big milestone - our Ruby wedding anniversary on 1 May.  


Tomorrow it will be exactly two years and nine months since Steve was diagnosed with mesothelioma and he's still going strong.  Woohoo!

softly, softly....

The softly, softly approach of keeping ourselves fully occupied in the run up to Steve's next assessment seems to have worked.  Up until now, there has been no time to dwell on what may or may not happen tomorrow.  


A quick turnaround last Saturday after my short break in Liverpool and we were off again on Sunday, this time to Bristol.  We have been staying with our son Jack for the last few days to provide practical help and a bit of moral support while he recovers from dental surgery which was carried out on Monday morning.  For the first 24 hours or so after the operation, we had to be "responsible" adults to keep an eye on him while the side effects of sedation and the anesthetic wore off.  Being able to eat normally will take considerably longer; we would probably have stayed in Bristol for a few more days to provide support had it not been for Steve's hospital appointment tomorrow morning.    


We called into the Royal Photographic Society's HQ in Bath on the way home today to deliver the set of prints we are submitting to the 2012 International Print Exhibition (IPE) and to collect another set of prints from the RPS Members Exhibition and last year's IPE which recently finished touring the country. By the time we reached Swindon, the sun had broken through the heavy layer of low cloud and fog, lifting the spirits.  Let's hope its a good omen for tomorrow.


So here we are, the day before the next assessment, still feeling relatively calm at the moment.....By this time tomorrow, we will know what's been going on inside Steve's body and will have a clearer idea of how life will pan out over the next three months and beyond.  Between then and now, there's lots of e-mails to go through and news to catch up, plus a small celebration tonight to mark our daughter Katie's success at passing her driving theory test while we've been away.  


Well done Katie!  

Keeping busy

It's that time of the year again, with Steve's next hospital assessment almost upon us. After getting very stressed in the run up to the last assessment, we have been keeping ourselves very busy to try and take our minds off what may or may not happen next week.  


After the last guest left on Monday morning following Steve's birthday celebration weekend, we took off to Focus on Imaging at the NEC Birmingham, to look at the latest cameras, stock up on paper for prints, watch an RPS distinction assessment and pick up a print box for a fellow member of the Oxford Photographic Society. All that would have been tiring enough for one day, but although Steve could relax when we got home, I went out again for the last session photographing a local dancer rehearsing for a performance later this week.  

I had previously tried - and failed - to interest Steve in taking another trip away from base in the run up to next week's hospital visit.  However, my friends Chris and Prue stepped into the breach and on Tuesday morning we went off together for short break in Liverpool; the best part of four days crammed full of sight-seeing, culture, catching up on news and enjoying meals out.  

Museums, galleries, cathedrals and walkabouts interspersed by pit stops to refuel.  What a wonderful way to stop dwelling on and getting wound up about next week's hospital visit!  

While I've been away with the girlfriends, back at home, Steve has been printing images for our submissions to the RPS International Print Exhibition which closes next week. Neither of us feels very confident about having work accepted, but if you don't make the effort you will never know....


Back from Liverpool last night, today is a catch up and turn around day for me. There are more things in the pipeline to distract us tomorrow and for the next few days before the crunch of Thursday's trip to the hospital when we'll find out what's been going on inside...


Last year, a conference about mesothelioma in the Midlands highlighted that carers experience more isolation, anger and anxiety than patients. You only have to look at the blogs written by others whose partners have been diagnosed with mesothelioma to appreciate how helpless we feel at times.  In some ways it's reassuring to know that other people in my position feel the same.  Let's hope the distraction of being with someone else next week is enough to keep my mind from dwelling too much on Thursday's assessment.  We shall see.....

Milestone!

When Steve was first diagnosed with mesothelioma back in June 2009, his 65th birthday seemed like a very long way off in the future.  But he's made it!  I imagine that for most people, the idea of being officially "old" is not something to shout about.  But if you have have been living on borrowed time, it's something to celebrate - so that's what we did this weekend.


A meal out with our children on Friday - Steve's birthday - followed by a big family lunch at our house on Saturday, and very enjoyable it was to!  

Well done Steve - 65 years young and another target hit!  


Here's looking forward to the next big target on 1 May when we celebrate our Ruby wedding anniversary :-)

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.  

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!

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.