Wednesday 30 June 2010

travel insurance saga - a happy ending

In a last ditch attempt to find a reasonably priced travel insurance, this afternoon I googled "travel insurance cancer" and near the top of the page noticed a link to a newspaper article by Judith Potts published yesterday under the headline "Travel insurance can be astronomical for cancer sufferers.  But not if you choose carefully."  

This looked promising.......

Half way down the page was the phrase "I was beginning to despair until I came upon a company called Insurancewith ( tel 0845 2307 159)" which was started by Flora Macrae to help people like us, based on her own experience of trying to get cover after treatment for breast cancer.

I followed the link, completed the medical screening online for Steve's mesothelioma and his arthritis (which has now run its course, according to the doctor) and was rewarded with a policy covering both of us costing less than £65, including an additional premium of £11.54 relating to Steve's medical declaration.  

Three cheers for Flora Macrea for her enlightened approach to insuring cancer sufferers and to Judith Potts for writing about it....not forgetting Google who found the newspaper article for me.

A happy ending all round.  Hip hip hurray !!!!!!!!!!

the travel insurance saga

If you dip into the blog from time to time, you will know that Steve's mesothelioma has been stable on his last three assessments and that we have been out and about over the last year, traveling extensively in the UK on short breaks and visiting family and friends. 

You will also know that in spite of the cobweb of meso cancer cells lining his right lung like a thin rind, Steve is fit enough to jog around the park and walk into town and back. In fact, in that respect, he probably compares well with men a lot younger in years, especially those who smoke or are seriously overweight.  Currently he's not on medication, doesn't need a mobility aid or use oxygen.

How ironic therefore that when we decide to take a week's holiday abroad, getting travel insurance with his pre-existing medical condition is proving to be an uphill struggle.  So, for everyone out there with mesothelioma who wants to go overseas for a short break, here's a list of insurance companies who will decline cover, even though most of them are listed on the Macmillan website as businesses who specialize in providing insurance to people with pre-existing medical conditions, including cancer. 

Save yourself the time, frustration and the cost of phoning the following companies if you want travel insurance which takes your mesothelioma into account - you will be turned away:

  • Saga
  • Age Concern
  • Freedom Insure
  • Travel Insured
  • Able2Travel
  • It's so easy
You WILL probably be able to get insurance which covers your mesothelioma from the following companies, but at a cost...In our case the price quoted by one company for one week's cover in an EU country exceeds the cost of our entire holiday (flights and accommodation for two!) and the other is more than the cost of Steve's flight.  It's like having to pay for Leo as the uninvited guest!
  • All Clear (£653.00 for Steve)
  • Free Spirit (£205.49 for Steve)
  • Insure Cancer ("in the hundreds" subject to written confirmation by Steve's oncologist that he is fit to fly)
As I write, we are still waiting to hear back from JD Travel Insurance who are brokers, but I'm not holding my breath.  

I think we will take the pragmatic approach and take out an insurance policy which waives any claim directly or indirectly related to Steve's medical condition, but which covers him for all the other usual stuff like delays, loss of luggage, theft etc.  

Having spent most of yesterday and part of this morning on this task I have had enough of answering more questions than the Spanish Inquisition, then being put on hold and having to listen to some horrible muzac only to be told that cover has been declined. Life's too short. And it brings home the horrible reality of being diagnosed with this disease. The financial implications of traveling abroad from now on are likely to get worse rather than better. Hardly surprising that people in Steve's circumstances pursue compensation claims for damages.

We'll need a holiday to recover from this less than joyous experience......

Sunday 27 June 2010

the ecstasy and the agony

Up until a couple of hours ago, it had been a great weekend.  The sun shone on us in Bristol as we walked the downs at Clifton and peered down into the Avon Gorge, followed by tea with our nephew Nick, his partner Kate and baby Esme who has grown so much since we last saw her and chortles merrily.  

We spent the night at our son Jack's house where we had a good meal and caught up on news.  We were out and about again the following morning visiting the SS Great Britain down in the floating harbour, where we were amazed and delighted by how much had changed since our last visit when Jack was not much bigger than a toddler. 

Took the ferry shuttle across the water for lunch, then back again after to clamber over the reconstructed Matthew, currently moored along side Brunel's masterpiece.  

Steve's mum was the object of our afternoon visit - it's her birthday this coming week so a good opportunity to deliver her card and present, and spend some time with her. We headed home via what seems like an obligatory shopping trip to Ikea, this time for a picture frame and some bits and pieces for the significant birthday party which is beginning to loom large.  Steve took it all in his stride, in spite of the high pollen count which gave him itchy eyes and a bit of a wheeze.

Today started full of hope and promise, with the prospect of seeing the England football team swing into action and play their way through to the next round of the World Cup. However, not surprisingly, the goal that was not a goal seemed to signal an accelerating decline in the  side's fortunes and the rest (as they say) is history. Ah well, at least life won't revolve around forthcoming football matches to the same degree that it would have done had things turned out differently.  However, at least the England cricket team was successful.......just!

Time to put the disappointment behind us and look forward to the good things that are planned for the rest of June and July!

Thursday 24 June 2010

Let's get physical.....

Yesterday was a very physical day one way or another.
  • The England football team finally woke up and played well enough to get through to the next stage of the World Cup
  • Wimbledon saw the start of the l-o-n-g-e-s-t tennis match on record..........
  • And we went for another gentle jog around the park at the end of our street, even resisting the temptation to stop and talk to a neighbour, Ludo, who was out and about enjoying the sunny weather.
Today, the longest tennis match on record finally finished and a letter arrived from the solicitor to tell us that the claim for damages has been lodged at the courts so the long arm the the law has finally started to swing into action. More about the legal niceties in a future blog. Watch this space as you enjoy the summer!

Monday 21 June 2010

the longest day

This time last year, we had just told our children, his mum and brother that Steve had been diagnosed with mesothelioma, and we were preparing to meet the radiotherapist and oncologist to discuss his treatment.  We didn't have the faintest idea of what the future would bring, only that it would be challenging (to use a hackneyed phrase) and that we would try very hard to be positive.  

A year on and, so far, doing something positive seems to working. The longest day of the year dawned bright and sunny this morning and we decided to do something we haven't done for a very long time.  We went for a run in the park together. I know that doesn't sound like a big deal.  I confess, it wasn't a marathon or sprint, more of a gentle jog for about a third of a mile.  But we did it and Steve didn't collapse, or cough, or seize up (and neither did I).  

If you had said to me 12 months ago that we would jog a circuit of the park to celebrate the 2010 solstice, I doubt if I would have taken you seriously, even at my most optimistic. But now I think our attitude has shifted somewhat. The sword of mesothelioma still hangs precariously above our heads, but we try to look forward more than we look up at that time tomb hanging over us, and we celebrate the little things which make life special, not just the big occasions.  

We are not the only people celebrating today.  Happy birthday to Chris in Wells and thank you for a wonderful garden party yesterday!

Not forgetting the Portugal football team who managed to score 7 goals in today's match against North Korea. They'll be enjoying themselves tonight, I bet :-)

Getting back down to earth, I have just read some poignant words written by Ray, whose wife Mavis has mesothelioma. You can find a link to her blog top right.  The words are about how he deals with Mavis's condition. They were written in response to a request on the Macmillan Forum from a lady whose husband has the same disease.  She is finding it hard to cope, especially as her husband won't talk about his mesothelioma.  

In many ways, Ray's words echo my own feelings about living with Steve's mesothelioma. I can't read them without the tears welling up and a lump forming in my throat. You will probably find the same.

"Hello.  Mavis said maybe I should talk to you. 

How do I feel? It's been a year since diagnosis. Over 365 days of fear, pain, and disbelief.  I wake each day and am thankful that we have another day together. I dread the scans and the oncologist visits.  We sit in the waiting room waiting our turn not saying much, but secretly praying for good news.

But we have a life a good life and we try to get as much done as we can.  We don’t sit and dwell or mope.  Together we don’t talk about it, well to each other.  But it's always there, when I drop off to sleep and when I wake up.  

Every day is a bonus. What the future holds or how long that future will last I do not know.  I do know that when that day does show itself, for me life will cease. For 53 years Mavis has been my life, my breath, my best friend, my everything, and I cannot imagine life without her.  It's her courage that keeps me going.  She is so up front and brave, it helps me to cope. I feel that if she wasn’t so courageous in the way she deals with it, then I would probably be in tears every day.  

It's a case really of taking what we have and making the best of it. I say to you chin up;  support your husband because he is in pain too. Support each other, and be there for him.  For me, whatever she wants that’s what she gets.  I don’t care what it takes.  If I can do it, then it's done. 

I hope this in some small way helps you. There are lots of us out there. 

Try not to think of yourself, but of your partner.


Tuesday 15 June 2010

364.5 days and counting.....

This time last year I was in London preparing for a work-related meeting scheduled for tomorrow, worried about leaving Steve on his own to hear the results of the biopsy which was carried out when fluid was drained from his lungs and the pleurodesis op that followed to stick the lining of his lungs back together.  

Ironically I shall be in London again tomorrow on the anniversary of his mesothelioma diagnosis, but this time I'm being being trained as a health and safety rep for my union, Prospect.  If nothing else during the last twelve months, I have begun to develop a better appreciation of work-related H & S issues.  If I can help prevent someone else having to go through the sort of experience Steve has had this last year, then it will be worthwhile.

The date of 16 June 2009 will stay in my mind forever, probably because I feel horribly guilty that I wasn't there to support Steve when he heard the news.  Steve, on the other hand, says he is quite relaxed about it.  The disease has started before the diagnosis.  16 June just happened to be the day he was told about it, although he had been worried about developing mesothelioma ever since his dad had died of it as a result of breathing in asbestos when working in the ship yards in Bristol before he was born.

But here we are, almost a year to the day since the diagnosis was delivered, and life goes on.  Steve's condition is still stable, something that seemed almost too much to hope for twelve months ago.  But in the last year he has had chemo; taken his vitamin tablets and mushroom supplements every morning; walks as much, if not more, than most people of his age, and still acts like a kid from time to time.  We both try to be positive, and have benefitted greatly from the love, support and practical help we have received from you.  Thank you!

What does the next year hold?  Who can tell?  You'll just have to dip into the blog from time to time to find out.  I can say that there are good things to look forward to....Watch this space :-)

Saturday 12 June 2010

a bit of frustration, a sigh of relief and great expectations

By now, Steve should have looped the loop. No kidding! He really was going to view the world from a novel angle in a Chipmunk airplane. However, the thundery showers yesterday morning in this part of the world put paid to that - which was a bit frustrating but not the end of the world.  We try again very soon!

We were back in hospital again this morning.  Not the Cancer Centre at the Churchill Hospital, but the Nuffield Orthopaedic Centre (NOC) nearby, hanging our joint exhibition.  

It's a collection of images with a botanical/garden theme which includes some of the pictures we took to Chelsea Flower Show; some from my allotment project Cultivating Communities; some of Steve's creative abstracts including Tulip Sky (see blog 28 August 2009) last seen on the underground and at the 2009 RPS International Print Exhibition, and some of my award winning pictures, including The Allotment in June (blog 13 January 2010), Potting Shed (blog 16 February 2010) and this one Nymphaeaceae (water lily), which was commended in the plant close up category of last year's RHS competition.  

We'd arranged the exhibition last September and hadn't given its much thought since then, so when it all came together relatively easily this morning, we heaved a big sigh of relief!

So much for feelings of frustration and relief.  It's now time for great expectations....Need I say more?

Thursday 10 June 2010

shock, surprise, shock, delight

I confess.  Getting up early this morning for Steve's hospital appointment at the Cancer Centre was a bit of a shock to the system.  However, we arrived in very good time and, to our surprise, there were plenty of parking spaces at the Churchill.  As there was no need to hunt for somewhere to park the car, Steve was the first person to book in at the radiology department, and only waited a short while before his chest X rays were taken. Consequently, we arrived at the Oncology Day Centre in good time for his assessment appointment.

That was when we had a shock. The receptionist looked puzzled when Steve gave his details, then informed us that today's appointment had been cancelled on 19 April because the consultant would not be available.  This was the first that we knew of it.....On reflection, the cancelled  clinic probably explained the surfeit of parking spaces outside. However, having wound ourselves up for this appointment, the prospect of having to arrange another and the extended wait to find out how Steve was doing, was not a pleasant thought.

Fortunately, one of the registrars was on duty and happy to carry out Steve's examination and assess his X-rays.  I'm delighted to say that the cancer is still stable, almost a year to the day he was diagnosed on 16 June 2009! The next appointment is not until early September so, all being well, we can look forward to another three months of enjoying life whilst he's still feeling good :-)  

The feeling of apprehension has lifted; stress levels have plummeted and we can look forward to being sociable over the summer.  How wonderful is that? 

Tuesday 8 June 2010

a different sort of year

When I gave blood yesterday, I filled in the usual questionnaire at the start of the proceedings.  One of the questions is whether you have been abroad in the last 12 months and the answer is usually "Yes" - somewhere in Europe on holiday.  Yesterday I had to answer "No". Inevitably, this triggered a train of thought.....

It's now over a year since our last trip abroad - an anniversary visit to Florence - and a planned holiday to Turkey had to be cancelled.  We never did get to visit our friends in Vietnam, which had been pencilled in for October. Rather then go off on a grown-up intermittent gap year as planned, life has taken us on a different sort of journey these last 12 months.  

Along the way, we have come to rely on, and really appreciate, the practical help and emotional support we have been given by family, friends and work colleagues. We have also been inspired by others in Steve's position who are determined not to give up without a fight and are happy to share their experience and knowledge of mesothelioma to help us do the same. I do hope that we will see many of you in July at my significant birthday celebration; it's our chance to say thank you for all the support you have given and continue to give us.

Although it felt like we had fallen into a black hole when Steve was first diagnosed with mesothelioma last June, life went on.  Even during the six months of chemo, we managed to get out and about quite a lot between the seemingly endless hospital visits, pacing ourselves as necessary depending on how tired or nauseous Steve felt at the time.  The last six months has been much better as the side effects of chemo have become less noticeable (although Steve's fingers and toes still feel numb) and Leo has been stable at the last two assessments.  Since my work commitments were fulfilled, we seemed to have packed in quite a lot, including some first time experiences!  

However, as the next assessment draws closer, I can feel the apprehension and tension beginning to build again, even though we have no reason to suspect anything other than the cancer is still stable one year post-diagnosis.  Living with a time bomb is nerve-wracking, particularly at times like this.  Just have to stay positive and concentrate on the good things.....

......And on that note, my first book review has a two page colour spread in this month's RPS Journal; weather permitting, Steve will have looped-the-loop by the end of this week; our joint exhibition of botanical images is being hung at the Nuffield Orthopaedic Centre on Saturday; we're off to a special birthday party in Wells the weekend after; then there's a trip to Chichester, a riverboat tea party, and a joint 57.5 birthday party in Frome, as well as our party, happening in July.  With so much to look forward to, Leo won't know what's hit him!

Friday 4 June 2010

time flies....

It's been almost three months since Steve's last hospital check up and the time has flown by having fun - visits to Bristol and Huddersfield to see family; cheering Jack on at his half-marathon in Bath; walks in Oxford, the Peak District and Hampshire both together and with friends; Jack and Katie (and George) visiting here; meals out with friends, including Jon and Sally, Richard and Alison over from France and Ian visiting from Vietnam; a trip to London Zoo; a weekend on the Gower; a week in the Lake District, and a trip to Lord's to see a test match.  

But we are now getting close to Steve's next assessment - trying hard not to get too stressed and to stay positive about the outcome. Steve still feels fine in terms of his breathing, although he has been suffering a bit with hay fever recently, like many others. The hay fever tablets seem to be doing the trick, so we don't think it's Leo flexing his muscles. Steve is also suffering with a stiff neck - his arthritis seems to be flaring up again, so he might need to go back on the anti -inflammatory drugs for a while.  So what do you do when you have a stiff neck?  Book the trial flying lesson he was given as a birthday present in March and loop-the-loop.  Something to look forward to after next week's assessment!

Things are moving slowly forward on the damages claim front.  We have received copies of the reports from the medical consultant and asbestos environmental specialist, and Court Papers have been served on Oxford Brookes University, successors in title to Oxford Poly, which seems to be the most likely cause of Steve's exposure to asbestos. I guess we sit and wait now to see if they fight the claim or settle out of court.

In the meantime, the sun shines and we are making the most of it.  Katie and George are visiting for the weekend and we went out for a meal at lunchtime in Oxford Castle, then on to Carluccio's where some of my photos are being exhibited today, tomorrow and Sunday as part of the Festival of Flowers and Gardening.  I'm also celebrating the news that three of my images have been selected for Issue 6 of Fotoblur magazine.  You can see them in my portfolio : Twist (page 2) Down and around (page 3) and Into the light, together (page 6). 

Plans are progressing for a bit of a do in July when I will have a significant birthday and there are other invitations to follow up between then and now.  But first we have to get through next week's assessment.  I'll keep you posted on the outcome.  Keep your fingers crossed for Steve xxx

Wednesday 2 June 2010

another first.....

Having enjoyed our first visit to the Lake District recently, we did another "first" on Sunday. But you have got to guess what and where!
Clue 1
Maroon and gold stripes were being worn by the chosen few
Clue 2
Most people were drinking alcohol (beer, Pimm's or champagne) from 11 am
Clue 3
Favourite pastime of those observing was reading the Sunday papers, closely followed by dozing in the sun, whilst the most energetic did a Mexican Wave, made strange noises occasionally, and from time to time waved red cards with 4 or 6 on them in the air
Still haven't worked it out?
Clue 4
This should help!

Yup....We made our first visit to Lord's and watched our first Test Match England v Bangladesh.  It was Jack's idea and he joined us for the experience and gave me the idiot's guide to the rules of the game.  And here is a taster of what we saw!

and here's the Mexican wave...and the lady who turned her back on the bowler!

and that's not all....

....We finished off the day at a party in Oxford to say farewell to Emily and Nick who are going off on their travels to the Far East shortly....

Cramming so much into one day and the early hours of the next took its toll and we have taken time to recover (not just Steve but me too)  But it was worth it!

On a more sombre note, two weeks ago we were happily strolling around the harbour at Whitehaven in Cumbria.  We could hardly believe our eyes and ears as today's story of multiple shootings in the area unfolded on the news. Our hearts go out to those affected by the tragedy.