Recipe for a memorable Christmas!

Ingredients

Christmas tree, lights, baubles and a star
Wrapping paper, ribbons, sticky tape and tags
Cards, envelopes and letters (sent and received)
Balloons, streamers and candles
Christmas stockings
Presents (all sorts!)
Christmas crackers
Good food (all sorts)
Chocolate
Wine, prosecco and champagne
Board games, jigsaw puzzles and books
Chocolate
Music (all sorts, including Carols from Kings College)
Buck's Fizz, mulled wine and cider
Chocolate
Boxing Day walk 
A "bit of a do" with the neighboours
Chocolate 
Family

Method
Do as much preparation as possible in advance
Get in the festive spirit by enjoying champagne and mince pies with the neighbours
Finish decorating the house and tree whilst waiting for the rest of the family to arrive
Turn off all alarm clocks
Lubricate the proceedings regularly with food and drink (and chocolate)
Rest as necessary
From time to time, stir games, puzzles, books and music into the mix of food and and drink (especially when experiencing chocolate overload...)
Liven up with a breath of fresh air as required, preferably with a riverside walk finishing at a picturesque pub that does mulled cider....
Phone up or meet up with friends, go to a pantomime, art gallery...whatever takes your fancy

Enjoy yourself!

Serves four
Preparation time - about a week
Cooking/enjoyment time - 7-14 days, if not longer

Our memorable Christmas is drawing to a close, but it's been lovely to have both Jack and Katie here with us at the same time and to hear about their plans for the future - new job, moving house - especially as we can't bring ourselves 
to look very far into the future, as things stand.  Although Jack returned to Bristol this morning, Katie is with us for a bit longer.  No doubt, she will "first foot" for us on New Years Day.  Who knows what 2016 will bring? Changes for sure.  We shall just have to see what and when. Come back and check in 2016.  In the meantime, a very happy New Year to you all, with our love xx

Six and a half years on: A blog post from Steve :)

Today marks the six and a half year anniversary of Steve's diagnosis with mesothelioma.  Sadly, not many people live as long as he has with this cancer, so to celebrate this mini milestone (and because he hasn't written for ages) I have asked Steve to write something for today's blog.

Steve writes:

Is it my turn again? Well, there's a surprise. Six and a half years, who would have guessed I'd get this far. Makes me wish I took a bet out on my survival all those years ago, one guy with mesothelioma did and made quite a nice little sum. So much for statistics, they're never the whole story.

Looking back over these blog posts, I realise how many good things we've been able to cram in since diagnosis. Although it's not all been plain sailing, I've been very lucky to have had the time I have. A big thank you to Linda for getting me out of my chair and on the road!

That time has also shown me how many friends I have, all wishing me well, it truly is humbling and I don't deserve you. Thank you all for being there.

Talk again in six months time? Why not? See you then.

And now me again....

More good news - at long last, Steve's Attendance Allowance has come through, backdated to September when the application was originally submitted.  I can't bear the thought of going through all the form filling again when applying for for Constant Care allowance, so jumping through that particular hoop that can wait until after the festivities....

We have enjoyed more visits from friends..Jon and Sally came for coffee and pastries which rolled gently into a light lunch on Sunday - easier than going out for a meal, when Steve's appetite is so unpredictable!  Steve has started his Christmas course of steroids, so we are hoping for some improvement on that front over the festive season.

The District Nurses were back again this morning.  I've been shown how to clean and dress Steve's pressure sores, so will act as honorary DN in between their visits which will now be every other week unless there is a problem.  They are also sorting out the lardy cream for dry skin, which seems to have got lost somewhere in the system.  Steve is fantasising about Joanne Whalley "greasing" Micheal Gambon in Dennis Potter's Singing Detective...... (google if this means nothing to you!)

The DNs are going to ask for an Occupational Health Assessment to be arranged to see whether they can suggest any aids or adaptations which will help Steve now he tires so easily on exertion.

We're printing the last batch of Christmas cards, which (all being well) will be written and posted by the end of the week. Just waiting for one more present to be delivered.  The christmas tree is standing in a bucket of water in the garden, ready to be brought indoors for dressing when all the cards and pressies are on their way, and the decorations are on standby ready to go when the table is clear of wrapping paper, lists, cards and envelopes.  

With no planned guests until next week, we ought to have plenty of time to sort ourselves out even taking it easy, lingering coughs notwithstanding....Enjoy the run up to the holidays and don't get stressed xx

DNs join the team

Although she arrived late on Wednesday - just as we were about to eat lunch - we forgave District Nurse Mandi at once. Oxford traffic is bad at the best of times.  Christmas shoppers, deliveries and roadworks at strategic junctions have combined to make it even worse at the moment.  

The important thing was that she came, she saw, and she took action - bathing the sore area on Steve's spine, drying it and dressing it with what I can only describe as a giant hydrocolloid blister plaster....perfect cushioning for pressure sores.  She will also ask the GP to prescribe a special lotion to apply to other bony bits to reduce the risk of more pressure sores developing in future, plus a special moisturiser for very dry skin - another of Steve's (minor) problems.

A different district nurse arrived today - Chrissie - and repeated the same procedure.  She also brought a soft, inflatable cushion which will help reduce pressure where Steve leans against, or rests on, solid surfaces.  Never one to have much spare flesh, he now has no fat and not a lot of meat on his bones so this will be a great help.  A similar product is available as a mattress, but he doesn't need that at the moment, preferring to sit on the sofa in the living room downstairs than to be propped up in bed, upstairs.

So the District nurses (DNs) will be visiting twice a week now to dress Steve's sore bits, for as long as necessary.  It's good to have them on the medical support team!

The GP has prescribed more steroids which Steve will start taking some time next week probably, to boost his appetite over Christmas.  

Slowly, slowly, we are printing and writing cards and have posted the first small batch abroad - so doing better than last year when we just managed a round robin email greeting. We'll get there in the end....

We had a lovely time earlier this week with visits from friends on Monday and Tuesday and are looking forward to more visitors on Sunday.  Just hope my cough clears up by then and energy levels improve.  It's a bit of an uphill struggle at the moment.  But at least we are not flooded like those poor people in Cumbria....Please stay, warm safe and dry!

Lastly, an apology to those who have sent lovely supportive emails and not had a reply.  Life is a bit of a blur at the moment, but we have read them and they do lift the spirits...and occasionally bring a tear to the eye.  Thank you xxx

Joy and Frustration - the Attendance Allowance saga continues....and where is the District Nurse???

We have had a lovely couple of days, enjoying visits from our friends Agnes, Andy and Dave on Monday, and Keith and Glynis yesterday.  But the edge has been taken off the joy of the last two days by today's morning of frustration ....

Spoiler Alert - this post is a whinge...Feel free to ignore!

Back in September, I applied on Steve's behalf for Attendance Allowance under the Special Rules for terminally ill people. Such applications are supposed to be fast-tracked and processed within 11 days.  

Having heard nothing for a couple of months, I followed up in November and was told that although the application had been scanned in as "received" on 22 September, it had subsequently vanished without a trace.  

A duplicate set of completed forms was duly posted off that day at the Department of Work and Pensions (DWP) request, and I followed up again this morning, having heard nothing two weeks later.  

The first person I spoke to in "New Claims" unit told me I had got through to the wrong section.  They only dealt with enquiries from people making new claims and sent out forms. A different section dealt with people following up new claims which had been submitted but not processed....

So I rang again, got through to the correct section, only to be told that the only information showing up on the computer screen under Steve's name and National Insurance number related to Disability Living Allowance (DLA) - a different benefit for people of working age, rather than someone over 65 years, like Steve.  

In spite of my protests, I was transferred to the DLA unit, only to be told that I had been given the wrong advice. Surprise, surprise.  Transferred back to the Attendance Allowance Unit, I spoke to a different person, gave them the same information - Steve's surname and National Insurance Number - and explained the background again.

This time round, they found the record of the first attendance allowance application being received in September, and the duplicate application having been received in November.  But once again, the trail had gone dead.  The application hadn't even been registered, let alone processed in the fortnight since it had arrived at the Unit.  So much for fast-tracking applications for the terminally ill within 11 days.  We are now at 11 WEEKS and still counting...

The other frustration has been waiting at home for the District Nurse, who is supposed to be coming between 9.00 am this morning and 1 pm this afternoon.  Still no sign of her...

She is coming at the request of Hannah, Steve's lung nurse specialist, to look at a lump on Steve's spine which has developed into a sore.  Most people develop "bed" sores due to inactivity...Steve has a "sofa" sore where he has spent so much time sitting on the sofa doing crosswords, sudoku, browsing the internet etc etc  (or at least, that's what we assume it is...).  

Now, if I start lunch she is bound to come, isn't she?

With apologies for venting my frustrations on the blog....it's been one of those mornings

Festive feasts in the House of Coughs

The festive season has started early at Henry Road.  The Sunday before last, we hosted our first extended family festive gathering with the Bristol branch of the Wride clan. Last Sunday we did the same again, enjoying a festive feast with the Frome-based branch of the family, who kindly acted as courier bringing with them the wheelchair offered to us by Mandy, one of our Facebook meso friends. Thanks again, all of you!

This weekend, we have taken break from festive feasting to make some progress on other Christmas preparations - producing our first batch of Christmas cards and choosing presents.  How very different from this time last year, when we were still reeling from the news that Steve's life expectancy was thought to be a "small number of months" and could only manage a very low key festive season, with electronic greetings rather than home produced cards and no socialising......

This year's festive socialising begins again tomorrow, with visits from our friends Andy and Dave dropping in on their back home to the Peak District via Oxford, and Agnes calling by en route to Luton airport before she flies back home to Budapest.  On Tuesday, it's the turn of more friends from our student days - Keith and Glynis - combining a short break in Oxford with a visit to us before heading back to Bury St Edmunds.  More visitors are coming next weekend, so lots to look forward to!  That means a lot to us, now we are spending so much time based at home. 

On the health front, Steve's not sure whether the mucus-thining medication is working, but he's still coughing a lot, whatever.  Over the last few weeks our son, who is staying with us at the moment, has also been soldiering on with a bad cough.  Just as he started to get better, it was my turn to joining the coughing choir and keep our poor neighbours awake at night....Hopefully, we are both past the infectious stage by now.  Wouldn't want to pass on this bug as an unwelcome Christmas present to our visitors....

So...its beginning to feel a bit like Christmas.  Present deliveries in the pipeline; off to get the tree some time later this week; cards to write and post...

....But amongst the mesothelioma community, the people who had the very best Christmas present this year are fellow meso warrior Mavis and her husband Ray.  The "Keytruda" immunotherapy drug trial she has been on at the Royal Marsden has worked for her.  Her last scan showed no active cancer.  Mavis and Steve were diagnosed with mesothelioma around the same time in 2009, so we have been walking hand in hand on this journey for well over six years now.  We are so pleased to hear Mavis's news!  Lou in Australia is having similar positive results.  Quite a Christmas miracle in its own way - what better present could you wish for?  If only Steve was eligible for immunotherapy trials....

But there's no point in "what ifs" - we need to live in the here and now and make the most of this festive season.  Bring it on, as they say.  Here's hoping for some more miracles  x

Home entertainment

No blog posts for a over a week, and now three come along together.  Here is number 3

As getting out and about now is difficult for Steve, we are now enjoying the company of family and friends at home where Steve can take himself off quietly for a nap if he feels tired and doesn't have to worry about what/when/how much to eat - issues which makes dining out a bit tricky, even if we can get him to the pub/restaurant by car and wheelchair now that he is unable to walk very far.

So....we've been entertaining at home instead!   

My old school friend Angela kick started this round of visits, joining us for tea and cakes the week before last.  On Sunday, both our grown up children were here for lunch, along with the Bristol-based Wrides - nephew Nick, his partner Kate, daughter Esme and mum Di.  And jolly wonderful it was too! 

Yesterday, our friend Ruth dropped in for a chat on her way home after visiting her daughter Emily and baby grandson Reggie.

This coming Sunday, it's the turn of the Frome based Wrides to come for lunch - Steve's brother Martin, his wife Mary and son Mathew, together with Jack and Katie, our son and daughter. Martin will be bringing a wheelchair offered to us by a meso friend on Facebook. Mandy - you are a star!

Other friends are coming in early December - Andy and Dave on their way back to the Peak District, and Keith and Glynis taking a short break in Oxford to visit us at home.  Looking forward to it very much....

Home entertainment in the company of family and good friends - nothing to beat it!

Times they are a changin'

No blog posts for a over a week, and now three come along together.  Here is number 2

In May we were in Seville, climbing the Giralda tower, exploring the Alcazar, wandering around the Metropol Parasols, watching Flamenco and eating tapas....In June we visited Malaga, enjoyed the museums, walked around the port and up and down the beachside promenade, explored the Mesquita in Cordoba, drank mojitos and eat seafood at beach front bars.....In July, we found ourselves dancing to world music at WOMAD....In early August, we bopped the night away to Geno Washington and the Ram Jam Band at the Retro Festival, with only short breaks to recover between dances.  

It's only been a few months since we were having all this fun, but it seems like a lifetime ago so much has changed since then.....

Here and now in November, Steve can't walk very far under his own steam; the effort of getting up, dressed and downstairs tires him out so much that he needs a rest before tackling breakfast; his energy levels are so low, he's become a semi-permanent fixture on the sofa. I am reluctant to leave him on his own for very long, in case he needs something and hasn't got the energy to sort it out for himself. Cabin fever is looming large....

A course of steroids gave Steve's appetite a boost, but only a temporary one.  Now its going off again, he's chewing more and eating less.  Not surprising then that we have felt unable to accept some generous invitations from friends offering to take us out for a meal.  Since peaking at almost 60 kilos in July, he's lost almost 10 kilos (a stone and a half) in weight in spite of not doing much physical activity to burn calories.  

The persistent cough can quite literally be a pain in the side after a bad spell and, on a couple of occasions, has made him sick.

So...that's the bad news.  

The good news is that the new mucus-thinning medication seems to be helping with the cough. He can go back on steroids after a break and is hoping to time the next course to coincide with Christmas, so he can enjoy the festive food with family.  The delivery of a wheelchair on Sunday will open up the option to get out and about more (weather permitting), if Steve feels that way inclined and can overcome the psychological resistance to accepting his physical limitations.  

Perhaps best of all, is that family and friends now realise and appreciate that our social life has changed and are doing their best to accommodate us.  We still love to see people, but its easier to do that here than to arrange to go out somewhere.    So..to use that rather prosaic idiom, we are now "at home" most days for visitors, (but with a bit of notice please, and on the understanding that Steve may take himself off for a rest if he feels tired).  More of how that's working out in the next post!

The importance of following up

No blog posts for a over a week, and now three come along together.  Here is number 1

Following up 

• Hospital and GP

Steve had his post-radiotherapy follow up appointment at the hospital last week.  It was a bit weird as there was no "after" scan to compare to the pre-treatment baseline scan, and no physical examination. Dr P mainly wanted to talk to Steve about how he felt things were going and to find out if the radiotherapy had eased his breathing.  

After a long chat, we came away with a recommendation that the GP prescribe mucus-thinning medication (Carbocisteine) to help him clear muck from his chest more easily (bad coughing bouts send his stomach muscles into spasm) and a suggestion that he take prescribed codeine linctus when the coughing gets really bad (along with a laxative to counteract the side effects).  

We also discussed the benefits of steroids to stimulate his appetite and our concerns that his appetite is going off again now the course of steroid treatment is over.  Dr P suggested having a two week blast of steroids at full dose, followed by a break, then another two week blast (and so on), rather than a long course which starts with six tablets a day and tapers off by reducing the dose one tablet a week until there are none.  

While we were at the hospital, we also had a session with the dietician.  It seems we are doing the right thing at home, using full fat milk/butter/yoghurt, eating lots of soups and making smoothies, which are easier to swallow than chunky food.  She suggested having the evening meal a little earlier in the day when Steve seems to have a better appetite, and having a smoothie later in the evening.  She also pointed out that ordinary skimmed milk powder is just as good as the expensive protein powder we have been buying to make shakes - very helpful!  We came home with a leaflet of smoothie recipes which we must try out...

We followed up these suggestions with the GP, and the mucus thinning medication seems to be helping.  His appetite is variable.  However, we need to wait a while before he can have another blast of steroids. In the meantime, the weight has started to drop off again - another kilo over the last week. He is disappearing before my eyes....

• Blue Badge (Disabled Parking Permit)

Having applied to renew Steve's Blue Badge Disabled Parking Permit a good six weeks before it was due to expire, we eventually followed up with the Highway Authority having heard nothing for a month - the application was showing up as "received" on the County Council tracking website, but no action taken.  An exchange of emails with the Blue Badge team, and we advised that there had been a problem with the "system" but that application had now been processed and was being sent "fast track" for delivery.  Two weeks later, still nothing so we followed up again, only to be told that it hadn't been processed after all.  The lady Steve spoke to did it there and then, whilst he was on the phone. The new Blue Badge finally arrived two days before the old one was due to expire, to our relief. But so much unnecessary stress.....

• Attendance Allowance

Back in September, I applied on Steve's behalf for Attendance Allowance and then promptly forgot about it, knowing how long these things take even when fast tracked under the Special Rules for terminally ill people.  Today, I realised it was over two months since the application had been posted and we had heard nothing, so I followed up with a phone call.  It seems that the application had been logged as received on 22 September and scanned in, but had then disappeared into a black hole somewhere in the Attendance Allowance Unit - both the original application and the scanned copy.  So I was asked to complete the form again....How frustrating!!  Luckily, I had an electronic copy of the original completed form so that has been printed out and posted off again.   If I hadn't followed up, we would have been none the wiser.  I'll have to keep better track of it this time around....

• Post Office Savings

I'm finishing this blog post on a lighter note with a happy ending.  In the process of putting our affairs in order, we came across a very old Post Office Savings book, which Steve's parents had opened for him when he was only two weeks old.  The last withdrawal had been in March 1967, leaving the princely sum of £1 and 3 shillings still in the book. Out of curiosity as much as anything else, Steve completed an online form used to track down "lost" accounts and, a few days later, he received a cheque in the post for £3.51p, being the outstanding balance plus 44 years interest!  

Isn't it strange how such small things can bring a smile to you face :-) 

We are not alone

First, a big thank you - you wonderful people!  

In response to my last post, we have been inundated with comforting messages of support; enjoyed reading your good news and looking at your photos; received a lovely bunch of fresh freesias from my work colleagues in Guernsey, an offer of a wheelchair from a meso friend on Facebook and other offers of help; had a visit from an old school friend and arranged more visits in the near future, with family and friends coming here at various times over the next three weeks or so.  

Both of our grown up children are now visiting more often and staying over for longer, which is great from our point of view.

We definitely do not feel alone and are touched that so many of you are sharing our journey.  A heartfelt thank you to you all x

Steve is now down to taking one steroid tablet a day and his appetite is holding up most of the time.  Although his weight has dropped to just under 52 kilos, its remained stable over the last week, which is a small relief.  However, he often feels full up before he has finished his meal, eating the last few mouthfuls is often a real effort and stomach cramps are not unusual.  

After a long talk on the phone with the hospice nurse, he has arranged to see the hospital dietician when he goes to his radiotherapy follow-up appointment next week. He's already on a high calorie diet with protein supplements, so it will be interesting to see if they can suggest anything else.  

What else on the meso front?  Well, the cough goes on (and on and on...) and after particularly long bouts, it causes a stitch-like discomfort in his abdomen.  And the lumps on his chest where the cancer has grown through the chest wall are still expanding slowly.  I'm tempted to say better out than in, but we both wish they weren't there at all...

It's now approaching a year since Steve was told his life expectancy was a "small number of months" and nearly six and a half years since he was diagnosed with mesothelioma, so we still consider ourselves very lucky in very unfortunate circumstances.  

Since diagnosis, we have come into contact with many others on the same journey, including fellow bloggers.  Sadly, many of our meso blogging friends have written their last posts. However, there are others who have taken on the role.  I have added more links on the right hand side under the heading "We are not alone" to mesothelioma blogs by Heather, Claire, Linda (Lakin), Lorraine and Dave who are all at different stages of their journey.  

The bottom line is that we don't really know where Steve is on his meso journey.  He's been told before that the end is nigh, and then bounced back to everyone's surprise. Whether he will do a repeat performance this time, we'll just have to wait and see.  However, one way or another, we've had a long time to prepare for the inevitable (and are still working on getting our affairs in order - there's always something more pleasurable to do....).  How different to those poor people in Paris who went out to enjoy themselves on Friday night and will never go home.  We join with others around the world to tell the people of France that they are not alone.

time for some lifestyle changes...

Those of you who have followed this blog for a while will no doubt remember our friend and fellow meso warrior Tess Gully, whose own blog "Targets" was an inspiration for many until her untimely death in August 2014. 

Steve does not have a "bucket list" and, unlike Tess, has not been in the habit of setting targets. However, he is a great fan of rugby union and over the course of the last year or so has his cancer has continued to progress, he has wondered whether he would still be around to see the final of the rugby world cup.  Well, that "target" was achieved yesterday, in the company of our good friend Ian and a number of bottles of beer in front of the TV.  Not the final they had been hoping for, but good fun nevertheless!

Sadly, Steve didn't feel well enough to come into town on Friday night to join in the fun as friends and former colleagues said (another) goodbye to Murray who has after many years left the City Council, where I used to work a millennium ago.  Steve has been out of the house, but only as far as the car to drive to places too far or difficult to reach on foot or by bus. Once we have arrived, he has preferred to stay put in the vehicle rather than accompany me on errands.  

I think this is a sign of the times and shape of things to come. Until and unless he decides he is ready for a wheelchair or mobility scooter, Steve's physical horizons will be limited to the house and garden, the street outside and views through the car window.  And social life will probably be home-based. You will have to come to us, rather than us come to you....So if you are down this way, please do drop in if you are passing, or give us a call to arrange for a longer meet up over tea, coffee, drinks or a meal if Steve feels up to it.  

Although he is eating well most of the time, Steve's weight is reducing inexorably.  He's now down to 52 kilos (just under 8 stone 2 lbs) in shorts and a T shirt - a loss of 1.6 kilo/3.5 lbs in the last ten days.  In truth, that's rather scary...We can't blame it on the side effects of a drug trial like we could this time last year.  The word cachexia rears its ugly head again...

Yesterday, returning home after a trip to the garden centre, we bumped into Mark, an old friend and former neighbour in the street - always a pleasure to see!  The conversation started with the normal pleasantries including the usual question, how are you? 

Steve started to say "I'm fine.." but then stopped himself and admitted that actually, he's not feeling too great at the moment.  How do you respond to that, knowing that the cause of the problem is without a cure, and that hoping someone will get well soon is therefore not really an appropriate response in the circumstances? 

Well, there are no words. At least, no easy words. We know you don't want Steve to die or to be in pain. Take that as read. There's no need for a deep philosophical response, even if you can think of one off the top of your head. Swearing is permitted as a way of expressing your feelings and emotions. Black humour is keeping us going too!    

The bottom line is mesothelioma is a bugger and it's not going to go away.  If you really want to know how Steve is you will have to face our demons with us.  Its difficult, but it's just about do-able...believe me.  The fact is, life goes on until the last breath is drawn - and we both feel that Steve is still some way off that (although he's just told me that he's decided against investing in a new pair of jeans....see what I mean about black humour?)  

For now, we need to find ways of managing the changes imposed by the disease so we can make the most of life in the best ways possible. So bring us a bit of sunshine, smiles and laughter, funny stories, your news, maybe a bunch of flowers, and most importantly, your good company...either in person, or via letters, emails and phone calls (but please don't be offended if you happen to call at a bad time and we can't talk right then, or you don't get a response to your email).

I didn't start out intending to write stuff like this today, but it's like someone pressed a button and it flooded out.  Writing the blog helped me articulate and face the fears and emotions when Steve was first diagnosed back in 2009, and I have the feeling that it will be doing that again in the foreseeable future. 

In the meantime, life goes on....Steve wants his hair cut; there are winter flowering pansies and violas waiting to be planted out on top of the pots of crocuses, daffodils and tulips ready for next spring; a meal to prepare and an opportunity to enjoy the blue sky, sunshine and autumnal colours.

Love to you all x 

ups and downs...

It's been a week or so of ups and a few downs.

The ups have mainly been on the social front....

A visit from Steve's brother last Friday so that they could go to the Oxford Probate Registry together to swear the executors oath relating to the estate of their mum, Jean, who died in September.  The grant of probate came through today - much sooner than expected - which is a relief, and another load off our minds.  

A visit from our friends Ruth, Anne and Colin last Saturday who dropped in for coffee and pastries en route to see mutual friends - we loved the chance to catch up on their news and have a long chat, lifting the spirits as always!

Our son is also staying with us at the moment, so we have been enjoying his company much more so than usual and are making the most of it, before he disappears back to Bristol.

On the health front, Steve is in the process of weaning himself off the Prednisolone steroids which he is taking to stimulate his appetite.  The dose has been reduced to four tablets over this last week, and will go down again tomorrow to three tablets a day, for the next week.  

The good news is that his appetite has not diminished with the steroid dose reduction and he's still eating well.  However, after a period of stability, his weight dipped from 53.3 kilos to 52.6 kilos three days ago.  That's just under 8 stone 4 lbs in shorts and a T shirt.  Whether it's a blip or a downward trend only time will tell....

The sporadic coughing continues - usually associated with movement.  As a result Steve does not look forward to getting out of bed or indeed doing any activity which involves physical exertion, knowing that it will probably trigger the cough which makes him feel puffed out. It's an effort to get up, get dressed and get himself downstairs, by which time he needs a rest to recover.  

Not surprisingly, he will happily spend most of the day sitting doing crosswords, sudoku, browsing online, reading a newspaper (and being waited upon...) Not surprisingly also, his inactivity has the opposite effect on me!  Not the best timing, now the nerve root block injection I had back in August is beginning to wear off making the pain in my lower back increasingly noticeable.  

Steve's follow up appointment has now come through in mid-November.  Another three weeks or so before we find out if the course of radiotherapy has shrunk the tumour which is severely restricting the passage of air to the lower lobe of his left lung.  Hopefully, he will notice an improvement before then..

...Keep your fingers crossed for us!

zapped....

Since my last post, Steve has been zapped.  Five times, on the Linear Accelerator (LINAC).  Three radiotherapy sessions last week and two this week, finishing this morning. No horrible side effects so far, but the impact of treatment is cumulative and has yet to reach its peak, so we are not out of the woods yet...

He has been tired, but so have we both as a result of setting the alarm for silly o'clock so as to be at the hospital before 8am.  The fatigue may be the result of treatment, getting up early (for us!) day after day, or a bit of both.  We're looking forward to not having an early morning alarm call tomorrow....

Back to hospital again in four weeks time to see if the radiotherapy treatment has shrunk the tumour that's constricting the passage of air into his lower left lung.  I assume he'll have another scan before then to compare to the base line scan taken before treatment, but we don't have any dates yet.  If the radiotherapy is working, he should start to feel the benefits of increased lung capacity, so we should have some idea of its effectiveness before the next appointment.

Steve is now in the second week of taking the full dose of Prednisolone steroids (back up to six tablets) to stimulate his appetite which had all but disappeared, along with a lot of weight.  From Friday onwards, he'll start being weaned off the drug as long term use causes all sorts of problems.  One less tablet per day over each successive week, until they run out. I hope they can prescribe another type of steroid if the loss of appetite returns.... 

But for now, the Prednisolone seems to be working.  He's eating more but hasn't gained any weight.  However, the weight loss has been stemmed and now stabilised around 53.3 kilos/8st 5lbs 6oz in shorts and a T shirt.  

I am sitting here wondering how to finish today's post.  I'd love to tantalise you with hints about future plans, but in truth there are none.  We're just taking each day as it comes; fulfilling commitments and not taking on new ones for the time being; taking the opportunity to tie up some loose ends as and when things pop up, but not looking to far into the future.  

Lastly, heartfelt thanks to those of you who have sent lovely messages.  Sorry I haven't replied individually.  This last week has been a bit of a blur.  Hope to catch up with you soon x

What a difference a day makes...

For various reasons, the phone was hot yesterday with lots of calls including one from a doctor at our GP's surgery to say that he had sorted out a prescription for steroids to help improve Steve's appetite and boost his energy.  

I collected the prescription during the morning and Steve took his first dose at lunchtime - six x 5mg tablets a day of Prednisolone, a highly potent glucocorticoid steroid used in the treatment of a variety of illnesses.  

He's on a two week course to give him a boost, then will be weaned off gradually as abrupt withdrawal can cause serious problems. Long term use can result in side effects which outweigh the benefits so this is only a short term fix.  But, oh boy.....It kicks in quickly!  

How much of it is the drug and how much is psychosomatic, we don't know.  But in the last 24 hours his appetite has improved, he has felt hungry and eaten just about normally. No gagging as he swallows, or coughing up bits of foods stuck in his throat which has been a problem recently. Whether it will help him gain weight is another matter.  We shall monitor. The baseline weight taken yesterday (9.10.15) is 54.8 kilos/8 st 6 lbs (fully clothed).  

However, although he says he's a bit dozy this morning, in general, he looks and feels brighter too!  So much so that he has decided to reduce the dose by one tablet a day so that he doesn't go completely hyper, and take the medication in the morning so that it doesn't keep him awake at night.  

What a difference a day makes....

There has also been progress on probate relating to Steve's mum's will.  The "estate accounts" are done, forms signed and dated and will be delivered by hand to the Probate Registry here in Oxford on Monday.  

One of the so-called liabilities on the estate is a bill from Aabletone Nursing Home in Bristol where Jean died in September, on a Sunday evening.  But because the family didn't collect her belongings until Monday morning, we have been billed for the whole week.  That's £578.00 for two black bin liners, less than a couple of hours in the room to pack away her belongings, and not being able to tell us where her body had been taken.  We had to go hunting ourselves via the nearest funeral directors.  I kid you not!

What a difference a (half) day makes.....  

Waiting, news, action and more waiting

After my last post, we were waiting on tenterhooks for what seemed like forever to hear whether Steve could have a stent inserted to keep his airway open and when the course of radiotherapy would take place.  

In the end, the waiting got too much for Steve and he contacted the hospital for news.  When it came, it was a mix of good news and not-so-good news.  

The bad news is that the restriction on his windpipe caused by tumour growth is too deep to insert a stent which we were banking on to keep the airway open to his lower left lung. The good news is that radiotherapy to shrink the tumour causing the airway restriction has now been arranged. The planning session was this morning and the treatment sessions will start next week.  

The radiotherapy people confirmed that there should not be a problem if Steve takes steroids during treatment, so we are hoping to get a prescription sorted out sooner rather than later.  Steroids should help stimulate his appetite which is very poor at the moment, so that he can take on board more calories, stem the weight loss and have a bit more energy.

Steve was also given some tips on how to cut through the phlegm which he has problems coughing up - gut-rotting coca cola helps, it seems!  Also salt water or aspirin gargles should help if his throat gets painful as a result of treatment.  Plus the usual advice on keeping up the calorie intake - full fat milk and yoghurt, creamy butter, protein drinks, Danish pastries and donuts, nuts, soups with cream if swallowing solid food is difficult.  The Nutribullet will be working overtime, I think....

So....After this morning's action, we are now back to waiting. Waiting for the first radiotherapy session....Waiting for the Blue Badge to be renewed....Waiting to hear whether he will get Attendance Allowance....Waiting for progress on probate on his mum's will....

In the meantime, life goes on albeit at a much slower pace. Although we missed the Mesothelioma Patient and Carer Day, we did manage to meet up with Sue, a friend from our student days, who treated us for lunch (soup as it happens) at Worton Organic Garden - not so far away from us, but not somewhere we had heard about or visited before.  Thank you Sue - lovely to meet up with you again!

I am in the process of finishing my work commitments. Our son is visiting to see if he can help us progress the last few outstanding garden projects. Steve is talking about designing this year's Christmas card (we didn't send them last year as he was very poorly and told he only had a small number of months to live).  We have a photography day booked soon at the local Hawk Conservatory (hopefully the birds will fly to us, rather than Steve have to walk to them)....There are occasional references to wheelchair hire, but Steve isn't quite ready for that yet.  

When his energy levels improve, we hope to see more friends. But he's not feeling very sociable at the moment (who wants to talk about disease progression, after all?) so the emphasis is on taking it easy for the time being.  

So....Easy does it.

Leo is being obstructive

Those of you who have read the blog from the early days will know about "Leo".  Inspired by other meso warriors, it's the name Steve gave to his cancer in 2009, not long after he was diagnosed with mesothelioma in the lining of his right lung.  

Leo has been sleeping quietly for much of the time since then (albeit we have been reminded of his presence every three months or so when hospital assessment dates come around). For sure, there have been difficult times when Steve has had treatment - chemotherapy and drug trials - with nasty side effects.  However, the cancer itself had no direct, significant physical impact on Steve's day-to-day life for some five years. It almost seemed like tempting fate to keep referring to Leo during this period, so I haven't mentioned him by name very often in recent years....

However, Leo has reared his ugly head quite spectacularly over the last twelve months or so, and we can't pretend to ignore him any longer.  He's spread himself around a bit, making unwelcome appearances in Steve's liver and spine, invading the left lung, growing in the right lung, tunnelling through the chest wall and squeezing through Steve's ribcage, popping a rib in the process and causing the first real pain directly related to the cancer.  

A course of radiotherapy last December shrank Leo's visible presence a bit, but the lump on Steve's chest started growing again in August.  Consequently, at his hospital appointment on Thursday, Steve was expecting to discuss a further course of radiotherapy aimed at the external lump. However, Dr P (the medical oncologist) was not concerned about the visible chest lump - it's not causing pain, affecting movement or near any vital organs.  

She was worried however about a tumour nodule in his left lung which is severely constricting the air passage to the lower lung lobe.  Although the passage is still open sufficiently for air to get through at present, there is a concern that any further growth could close it off completely causing this part of his lung to collapse.  

People can, and do, live successfully with only one lung.  This is because the remaining lung expands into the space vacated by the collapsed/removed lung and increases its air capacity to compensate for the loss of the affected lung.  Which is great if your other lung is working properly.  Not so great if the capacity of your remaining lung is reduced and constricted by tumour growth, like Steve's right lung.

So...the race is on to keep the left lung airway open and make it bigger.  Dr P is hopeful that a stent can be inserted to expand the affected air passage. However, the blockage is quite deep into the lung which will make it difficult, maybe impossible, to insert a stent.  We are waiting for the specialist to advise.  Nevertheless, a further course of radiotherapy with the LINAC (Linear Accelerator) will be arranged regardless of whether a stent can be used. Five sessions over five days aimed at the nodule that's restricting air entry.  

Leo, you will soon be zapped again!

Now we wait for dates.....

Steve has taken this news remarkable well.  I think it helps him to know the reason for the problems he's been having on exertion, and he is reassured by the fact that there are treatment options to deal with the current crisis.  Of course, we don't know what's happening elsewhere in his lungs or the rest of his body.  They didn't discuss the rest of the scan report at his hospital appointment and he didn't ask for a copy to look at at home with me afterwards, on my return from a work-related trip to Guernsey.  I confess to being a little bit annoyed at the time.  However, in retrospect, perhaps not knowing the big picture in detail is a good thing, as things stand. One crisis at a time is more than enough to deal with at the moment.  No point sweating the small stuff until and unless the big issue is tackled.

So we carry on - taking each day as it comes, enjoying the early autumn sunshine and keeping our fingers crossed for England in the Rugby World Cup!

Family and friends

Since my last post, much of our time has been spent with, talking to, and hearing from, family and friends.

First of all, thank you for all the lovely messages, via e-mails and Facebook, in response to my last post.  I haven't replied individually as time has been taken up with funeral arrangements and other things, but want you to know that we really do appreciate the support of our wonderful friends! Thank you x

The family gathered together in Bristol last Friday for the funeral of Jean, Steve's mum.  It was a very personal service, with music and readings, poetry and tribute given by sons, daughters-in-law and grandchildren.  The great grandchildren participated too, their drawings adorning the Order of Service which Steve had designed.  As you would expect, there were tears all round, but smiles and laughter too as we remembered Jean and said our last farewells.

On Saturday, I met up with our friend Sarah and we went walkabout Open City sites south of the Thames, including a visit to Greenwich - one of my favourite places in London. Steve isn't up to walking any distance these days, but he did drive to join us on Saturday evening, tempted no doubt by Sarah's cooking and the prospect of one of those long lazy Sunday mornings when breakfast morphs into lunch, the wheels oiled by good company and lovely surroundings.

Last night, we were invited to a celebration to mark two friends leaving the City Council where I used to work. Steve decided he wasn't up to it, so I went alone.  It was lovely to see so many familiar faces and catch up with news over a glass of wine or two, but such a pity Steve wasn't there.  Today, we had tickets to visit the University's new China Centre at St Hughes College but ducked out due to a combination of rain and tiredness, and had afternoon naps instead.  Sometimes, you've just got to rest.... 

However, we can't ignore the fact that the mesothelioma is making its presence felt.  Steve is reluctant to go anywhere or do anything that might involve walking any distance or standing around for any length of time.  It tires him out.  I know he is feeling it because after years of resistance, at last he agreed to let me apply for Attendance Allowance on his behalf.  Another sign that he is not feeling confident.  He's not ready yet to take to a wheelchair, investigate mobility scooters or look into installing a stair lift.  However, we have talked about these things in passing, in an only half joking manner...

The good news is that Steve's appetite has improved a little since the funeral. I think the bereavement and stress associated with funeral arrangements and the service got to him more than he realised.  Not forgetting the thought of the impending hospital appointment on Thursday, when he will get the results of the most recent scan and find out if more radiotherapy will be offered on the lump on his chest which has started growing again after being knocked back by zaps last December.  

I'm not sure if Thursday's appointment with the medical oncologist will be an opportunity to discuss whether Steve is still fit enough for more chemotherapy or to take part in clinical trials (which is straying into clinical oncology territory - a completely different clinic and set of doctors).  We shall just have to wait and see....

A difficult week, but with some happy moments

As you can imagine, with the death of Steve's mum late last Sunday, it has not been an easy week.  Although you feel numb at the loss of a loved one, you still have to deal with the legal and practical requirements arising from a death - medical certificate; death certificate; funeral arrangements; content and order of service; the will and probate - as well as the emotional turmoil.  

However, the wheels were put in motion last Monday in Bristol, when we met up with Steve's brother Martin and his wife Mary to collect belongings from the nursing home, visit the GP and talk to a funeral director.  Steve's health has limited what we have been able to do since then in terms of running around, but he is designing the Order of Service and is coordinating input from family members for the eulogy he will give next Friday.  

No doubt, stress over the last week has not helped Steve's health.  He has been coughing more; he is becoming increasingly breathless and now gets puffed out just going up and downstairs; his appetite is variable, he is eating less and loosing weight; his energy levels are low, he is having afternoon naps almost every day and it takes a concerted effort to get on and do things.   

His scan was yesterday and there is a follow-up appointment with the radiology team in two weeks time, frustratingly on one of the rare occasions when I will be away from home, on a work-related trip to Guernsey. I will just have to trust him to give honest and full answers when they ask him how things are going.  

We know the scan results will not be good, but at least we will get an idea of how fast the cancer is now growing (as Lou, our meso friend in Australia says, it's not called an aggressive cancer for nothing...) and whether it has spread beyond the lung linings, liver and spine.  

But for all the doom and gloom, life goes on and there have been happy moments.  One of the highlights was a reunion with our dear friend Agnes, a fellow photographer we met in Budapest almost two years ago now.  She is splitting her time between Hungary and the UK, working only a short train ride away from where we live.  It was lovely to spend a couple of hours with her over lunch and we hope to see her again soon.  

At long last, we have replaced the boring privet bush by the front door with something a bit more interesting- a star jasmine Trachelospermum jasminoides - which we hope will grow up and over the porch to give year round colour, with fragrant white flowers in the summer and seed pods in the autumn.  That should make us happy every time we enter and leave the house!

Good news on the photography front too.  One of my images is part of a collage of photos which will appear on the new Royal Photographic Society's pack given to all new RPS members.  

I also have a print shortlisted for the Photocrowd/Alamy/Digital Camera exhibition which opens at the Printspace Gallery in London next week.  That makes me happy, even if it doesn't make the final cut.

Trying hard to stay positive....

For Jean, with love

I had intended to write a post about the meet ups we have enjoyed with our wonderful friends over the last week or so, but that intention has been overshadowed by the sad news that Steve's mum died last night, at her nursing home in Bristol.

It didn't come as a complete surprise - we had been advised back in the spring that her life expectancy was short. However, whilst forewarning helps soften the blow of bad news when it comes, it does not lessen the feelings of loss and sadness on such occasions.  

Steve's mum, Jean, was no stranger to mesothelioma.  She cared for his dad when he was diagnosed with the disease back in the 1980s.  I guess that makes her an honorary Meso Warrior, as well as a much loved mum, mum-in-law, gran and great grandma.  

Today's blog is dedicated to you Jean, with all our love xxx 

On the move again

Things are on the move again.

Sadly, it's not us on the move this time.

It's Steve's meso.  

The cancer is progressing visibly.  July's scan report noted that the lump on his chest (where the tumour has grown through the rib cage) had shrunk after radiotherapy last December.  However the weekend before last, some six weeks after the July scan, Steve noticed that it had grown.  

There is now a linear swelling on the outside of his chest extending diagonally from the site of the original lump towards his shoulder and armpit.  To see this change in such a relatively short period of time is worrying, as you can imagine.  If the cancer is growing that quickly on the outside of Steve's chest, there's a good chance it's probably doing the same on the inside.....

....Plus, his appetite has been variable; he has been coughing more, and getting more puffed out on exertion.  Not good signs.....

Time for action. 

The extra "puffers" prescribed by our GP are helping Steve's breathing and cough, which is good. Hannah, his meso nurse specialist, will arrange for him to see the radiotherapist after another scan to assess disease progression since July and to act as a baseline to judge the effectiveness of further treatment. We now are now in limbo, waiting for the scan date so that an appointment for radiotherapy can be sorted out.  Potential referrals to other hospitals are also on hold while we deal with the immediate problem.

Of course, life doesn't stop still in the meantime.  In the near future, we have another trip to Bristol to look forward to, and a few more social gatherings in the pipeline.  However, plans beyond late September are (of necessity) very fluid. 

We'll just have to take life one day at a time again.  We're good at that....

birthday, Bristol, family, friends and (another) festival

Its been a busy fortnight....

A birthday trip for me, starting in Bath with a visit to the Royal Photographic Society to deliver a print shortlisted for this year's International Print Exhibition; a chat with Lesley the exhibitions manager followed by lunch at The Bear pub nearby.  

Then on to a farm near Radstock to take some photos in the Somerset Lavender fields (a lot easier than going to Provence!) before travelling on to Frome to pay a surprise birthday visit to Steve's brother Martin to wish him many happy returns (we share the date) and a happy retirement too.

Two days later, I spent the afternoon with friends and former colleagues from the City Council visiting the Oxford Centre for Islamic Studies before rushing home to enjoy a repeat birthday celebration when daughter Katie and partner Ed came to stay with us for the weekend. 

After a meal together on Friday night, we went our separate ways on Saturday afternoon - them to meet up with their Oxford friends, and us for a very enjoyable gathering with our friends Ian and Ruth, plus Anne and Colin, visiting Oxford for the weekend - then a final family meal together on Sunday, before Katie and Ed returned to London.

The next day we packed our bags to spend a "holiday" week in Bristol with son Jack, indulging in a bit of art and culture with indoor exhibitions at the Arnolfini, Bristol Museum and Art Gallery, and the Royal West of England Academy.  

We also enjoyed some outdoor installations - the "Bristol Whale Project" in Millennium Square, woven in willow, emerging from waves of recycled plastic bottles, and "Withdrawn" an enigmatic collection of derelict boats nestled deep in Leigh Woods, on the other side of Clifton Suspension Bridge.   

Jack took us to Royal Fort Gardens (part of the University of Bristol) where we had fun trying to take some photos in the mirror maze, as well as capturing the very photogenic Life Sciences building.  

The prospect of a warm sunny day lured us to the coast for a traditional British seaside lunch of fish and chips amidst all the hustle and bustle of the pier at Western-super-Mare, followed by a more peaceful walk through the sand dunes and on to the almost deserted beach at Berrow, to photograph the wreck of a Norwegian boat, the SS Normen, which ran aground in 1897.

We had fun eating out too - lunch at Flinty Red with Jack, tea together at the Clifton Lido and an evening meal at the Greenbank community pub with nephew Nick, partner Kate and daughter Esme.

It was good to be able to go back to Jack's to rest up every evening after all this activity, and to enjoy his company. Steve was feeling a bit puffed at times and could have done with his inhaler to ease his breathing; it had run out, but he soldiered on anyway.  The only sad part of the trip was the visit to see Steve's mum in her nursing home.  She is very, very poorly and was rather agitated when we arrived.  Very distressing to see her like that, but feel unable to do anything....Apart from that, we enjoyed our extended visit to Bristol so much, we'll be going back again soon.

Back at home in Oxford one night, new inhaler picked up from the local chemist, then on to Newbury the next day for the Retro Festival - classic cars and other vehicles, vintage stalls, aerial displays, and lots of music and dance, with the highlight being a set by Gino Washington and the Ram Jam Band on the Ricky Tick Mod Stage on Saturday night.  Steve was a bit frustrated that he didn't have the puff to dance to every number, but still has the moves when he does!

After a day to recover, we were delighted to spend Monday afternoon with our friends Peter and Paula, visiting from London.  Good to catch up with their news, including the fact that they are going to be grandparents.  Congratulations Ellie!

The rest of this week has been a bit more down to earth - taking delivery of some new garden furniture; sorting out some work and medical matters; catching up with housework, slowly....and thinking about Steve's next steps on his meso journey, but without making any firm decisions as yet.  

Plans for more traveling are on hold for the time being, until Steve decides what he wants to do next and where he wants to do it.  Is it time for a second opinion, or a referral to another hospital now that the Churchill Hospital here in Oxford seems to have run out of options (for the time being at least)?  Hmmm...decisions, decisions.....