Celebrating Steve - tributes from the family

My Big Brother by Martin, Steve's brother

A lifetime ago, when we were small, you were there.

I’ll always remember how you looked after me, your little brother.  I’m not sure you were always welcome. Sometimes you looked after me a little too well. But most of the time I looked up to you!

You were always making things, breaking things, taking things apart to see how they worked.  There never seemed to be a time when you were not making something, drawing something, painting something.  

Everything and everyone were subjects to be examined and scrutinised with your incredible sense of wonder and then reproduced through the filter of that wonder into things of beauty.

Everywhere in the house there were doodles and sketches – margins of newspapers, envelopes, schoolbooks – anything with enough clear space for a little picture.  You were always going to be the artist of the family.  You had an infallible sense of what would work and what wouldn’t.

Risk - The game “Risk” springs to mind. You must have been about 15 or 16 at the time and buying a set was beyond your means. So you made one! From a square of hardboard and different coloured Marley floor-tiles, cut to shape with a Stanley-knife. 

You hand-drew every territory card – cut from the cardboard that stiffened new shirts. The infantry pieces were quarter-inch squares fashioned from the tile offcuts. You spent hours and hours of your spare time creating this wonderful artefact. And we spent hours and hours playing the game. You won most of the time, probably because you hadn’t written down the rules . . .

As we grew older, you became a Mod, or, more correctly, a Modernist. With a hairstyle to rival Paul Weller, you’d spend hours in the bathroom getting your “look” just right.  

For me, you were the “Thin White Duke” long before Bowie picked up on the idea.  You always had style long before style was fashionable.

I guess that’s what made you the artist – that profound sense of belonging but also of otherness.  That ability to think in two places at the same time.

All my life I’ve had the honour and privilege to be able to call you my big brother.

The Elephant and the Hummingbird by Heather, Steve's niece

I was trying to think of words to describe my uncle Steve and I decided that that there are other people who will do a much better job than me.

Instead I will tell you a fable about bravery. 

One day an elephant saw a hummingbird lying flat on its back on the ground.  The bird's tiny feet were raised up into the air.

"What on earth are you doing, Hummingbird?" asked the elephant.

The hummingbird replied, "I have heard that the sky might fall today. If that should happen, I am ready to do my bit in holding it up."

The elephant laughed and mocked the tiny bird.

"Do you think those little feet could hold up the sky?"

"Not alone," admitted the hummingbird.

"But each must do what he can. And this is what I can do."

One day the clinical drug trials that Steve took part in will stop a family's sky from falling in, and that is an amazing legacy.

A tribute by Katie, Steve's daughter

Thank you all for coming today. It's a difficult day for us all, and one that we all wished would be far, far into the future. 

Steve didn’t really have many strong views for his funeral, but he would certainly want today to be a celebration of life and the extra time that we were given together rather than dwelling on what we have lost. 

I'm proud to see how many people are here today, to see whose lives Steve has been a part of, as well as all the people who weren’t able to make it, but are here in spirit – I’m sure he would never have expected such a high turn out on a Thursday afternoon.

I've definitely taken on a lot of Steve’s traits – my boss tells me that I’m stubborn because I’m a Taurus, but I’m sure that it’s an inherited Wride trait. I’ve also become a general knowledge - cum useless information sponge. Disappointingly, we never managed to persuade Steve onto Who Wants to be a Millionaire.  He'd acquired an awful lot of general knowledge over the years and I’m sure he’d have had a good shot at the jackpot! 

I have inherited a tendency to leave everything to the last minute (including this speech) and a light-hearted/young at heart approach to life. I hope like Steve, I never really grow up.

I wish I’d have inherited some more of his creativity and artistic capability – I’ve certainly got his love for it, but sadly not the same level of skill to execute it. 

I also wish I got a bit more of the cool gene, I came to the painful realisation in my early twenties that I’m never going to be as cool or as stylish as my dad, and it was probably time to stop trying.

Steve gave me lots of advice growing up, from faking confidence 'til it comes naturally, to how to get a word in edgeways at a crowded dinner table, although at the Wride table this is still often a struggle. 

But as the stay-at-home parent as I was growing up, I’m sure I owe a lot more to him than I even realise.  He was many things to many people, but to me he was: a chauffeur, confidant, encyclopaedia, cash point, team mate, comedian, tech support, father and friend.

Now we have to start a new chapter of our lives without the physical presence of Steve, but his love and memories will stay with us in our hearts and minds forever.

A tribute by Jack, Steve's son

I had trouble writing these words.  Part of me is heartbroken. Part of me still doesn't really recognise the fact that Steve is no longer here.  And he was always Steve for me, rather than dad.  A fact for which I bless him and damn him equally, especially when trying to explain to my then six year old friends!

But for me, it was normal growing up, to spend time with Steve eating chocolate doughnuts  and watching the cricket in the school holidays, doing the school run and using him as a sounding board for the latest homework outrage during term time. 

We talked about lots of topics, as two opinionated characters do.....sport and tech more than most; England's latest selectional mysteries; the newest Apple computer.  The joy of screaming at the TV together during rugby matches.  Say what you like, I think they could hear us!

Smart and with a multitude of knowledge, he was the only person I feared to face at Trivial Pursuit.  The Wride pub quiz team is much poorer for his loss.

I'm so glad he got more time though, cramming in so much life during those years post-diagnosis, thanks to his friends, the Meso Warriors and family alike.  That support is one of the reasons I eventually got him to choose the charity for my Etape cycle ride later this year.  The amount of support received is beyond words and that's for him, not me.

I'd like to finish with a poem, so with apologies to Philip Larkin and Adrian Mitchell 

"This Be The Converse" 

They tuck you up, your mum and dad

They read you Peter Rabbit too

They give you all the treats they had

And add some extra, just for you.

They were tucked up when they were small

(Pink perfume, blue tobacco smoke)

By those whose kiss heals any fall,

Whose laughter doubles any joke.

Man hands on happiness to man.

It deepens like a coastal shelf.

So love your parents all you can

And have some cheerful kids yourself!

Doing Something Positive by Linda, Steve's wife

Steve and I shared our lives for more than four decades.  We built up a relationship as young lovers, developed our respective careers, set up home and raised a family, eventually became empty nesters and then enjoyed "retirement" together....a pattern which many of you will recognise....nothing unusual or out of the ordinary in this mutual life journey. 

However, looking back, it WAS extraordinary in many respects and that was because of Steve.  His irrepressible creativity; his disregard for convention; his attitude towards change and all things new and exciting and last, but not least, his approach to life when told he had a terminal illness.  

Steve's irrepressible creativity expressed itself in the bold decision to give up a career in architecture and branch out into the unknown.  He'd studied architecture for a number of years (repeating several years along the way, as friends from our student days will no doubt recall!). However, although Steve was passionate about good design, when he eventually stopped being a student and worked as an architectural assistant for a few years, the job offered few opportunities to be creative, and that sapped his spirit. 

So he turned his back on a conventional career, and with his leaving present he bought himself a book on silk screening and an airbrush kit, taught himself the techniques, made his own silkscreen frames and airbrush templates, and created designs to paint on window blinds. These days, it would be called a creative start up.  Back then, we called it a shop, Glossies, and it opened in North Parade Avenue in 1976.  Some of you came to the opening, as I recall!

Looking back over the Glossies press cuttings from the national press - the Observer, Homes and Gardens, Cosmopolitan - and the local paper, the Oxford Times, I'm reminded that although it was hard work, it was a very exciting and creative time.  As well as press cuttings and photos from back then, we also have another lasting legacy from the Glossies period.  People who came through the door as customers but subsequently became close friends - isn't that a bit special?

The second area of life where Steve stood out from the crowd was his disregard for social convention. In the 1980s, it was women who traditionally gave up work to bring up children.  But when we started our family, Steve and I swapped traditional roles. I returned to work after maternity leave, and Steve became the main parent.  

These days it's not unusual to see a guy carrying a baby or pushing a buggy.  Back then it was VERY unusual.  More often than not, Steve was the only male at the baby clinic and later, the only man waiting at the gate at school coming out time.  But that drew him into the school community, first as a "Friend of West Oxford School" then as a school governor and subsequently as chair of Governors, roles which he enjoyed and which he carried out with great dedication and enthusiasm.

Steve's involvement with the school helped cement us into the social fabric of the West Oxford community.  I'm delighted to see so many of our West Oxford friends and neighbours here today.

Steve did his parenting role not once but twice.  He must have done something right as both Jack and Katie survived the experience and grew up into wonderful young adults that we're both very, very proud of.

Steve wasn't afraid of change and actively embraced the new, in particular, the era of computer technology.  These days we are used to using computers at work and at home, wearing them on our wrists and having them in our pockets.  Back in the 1970s, personal computer technology was in its infancy. Steve was introduced to new technology by a dear friend Henry, the proud owner of one of the very early Apple Macs. Given half a chance, they would spend hours together huddled in front of the big grey box with its small screen, exploring its potential and having fun. 

Steve was so enthralled by these machines that he bought a ZX Spectrum for Jack's birthday.  Jack's first birthday, I should add!  So it was clearly intended to be more of a boy's toy than something to stimulate a baby's development. 

Of course Steve spent many happy hours playing games on the computer, but he did much more besides....He taught himself to programme (not an easy task at a time when Google didn't exist and you couldn't watch a "how to do it" video on U Tube).  He made electronic music and short animations.  And he created artwork, including the wonderful graphic cards that many of you will have received over the years on your birthday, at Christmas time and on other special occasions.  

He also created fine art prints and, as an artist, he was one of the founder members of WOCart (the West Oxford Community Arts group) and took part in the group's Artweeks exhibitions for several years. 

One of the last creative things he did was to design and print my Valentines card, which he gave to me the day before he died.  That very special card has inspired the end of today's celebration, as you have probably noticed :)  I will treasure it always.

Because of Steve's interest in new technology, we were early converts to digital photography. We joined the Royal Photographic Society and gained the society's distinctions, becoming Licentiates and then Associates of the RPS.  We even had the cheek to ask the Royal Horticultural Society for a stand at Chelsea Flower Show to exhibit and sell our botanical photographs, and to our amazement they said yes!  Some of you here today helped us or visited us on the stand during the show in 2007.  It was hard work but great fun, wasn't it?

The last extraordinary element of Steve's story is how he faced up to the diagnosis of cancer in 2009.  Not just any old cancer, but mesothelioma - an aggressive  cancer caused by exposure to asbestos fibres for which there is currently no cure. The same cancer which had killed his dad some years before, so he was under no illusion about the significance and consequence of the diagnosis. 

Imagine how you would feel being told that you could be dead in a few months and would probably live no longer than a year or 18 months.  Imagine getting that news before you've become a pensioner and got a bus pass, in the middle of what was supposed to be a grown up gap year, travelling with your partner.....

To my amazement, Steve was calm.  He didn't panic.  He didn't give up.  He didn't make a big fuss.  He just got on with it and took whatever opportunities came his way that might offer the chance to extend a good quality of life and maybe, one day, help find a cure.

Although we'd decided to share the bad news rather than keep it a secret, I found it difficult at first to talk to people about his diagnosis without dissolving into tears.  I got things off my chest by writing a blog which I called Doing Something Positive, a title inspired by Steve's positive attitude when faced with such horrible circumstances. 

If you've dipped into the blog from time to time, you will know that life hasn't been all been plain sailing since 2009.  Radiotherapy made him fatigued.  Chemotherapy was tough.  The side effects of three early phase clinical drug trials were punishing - affecting his appetite, his gut, his skin, his heart and his hair.  Loosing his eyebrows and eyelashes was particularly difficult for him.  Christmas 2014, or the "bald" Christmas as we refer to it in the family was particularly poignant as we all genuinely thought it would be his last.  But Steve surprised us all by pulling though, and we were able to pick up again on the good times again last year.

And we really have enjoyed good times since 2009.  Lots of traveling to places we had only dreamed of visiting in our previous life....Venice, Rome, Tuscany, Santorini, Marrakech, Budapest, Heidelberg, Paris, Caracassonne, Madrid, Valencia, Seville, Brussels and Amsterdam to name some of our destinations, wherever possible meeting up with friends during our stays...In truth, at times it felt like I was writing a travelogue rather than a blog about terminal illness. 

We also got out and about a lot in the UK, again often staying with friends - so I have many happy memories of trips to Yorkshire, the Peak District, Sussex, Devon, Cornwall, Somerset, Wales - not forgetting numerous visits to Bristol where our son lives, following in his father's footsteps, and London where our daughter now lives, following in mine.  And of course, we welcomed people to visit us in Oxford whenever we could. 

Into this mix of travel and socialising, we added art and culture, visiting exhibitions, going to events and Festivals.  We topped up the experience bank with hot air balloon flights, helicopter rides, flying a Tiger Moth and a Chipmunk airplane, with Steve taking control of the craft as he looped the loop....trips in fast boats and open top sports cars; sporting events - the Derby, Glorious Goodwood, Silverstone Grand Prix, Prescott Hill Climb, a test match at Lords, rugby in Oxford, Bristol and the Olympic Stadium in an amazing snowy Rome.....

When offered opportunities and invitations, the default answer was "Yes", working out how to do it afterwards.  From planning a year in advance pre-diagnosis, we learned how to be spontaneous, to take decisions at the last minute, to make the most of each and every day, as far as humanly possible.

You helped us do this, with your love, your support, your practical help, your understanding, and your invitations which helped us stay connected to the real world whilst living in what might have otherwise have been a nightmare. 

The global Mesothelioma community on Facebook - the self-styled Meso Warriors - have also been there for us, day and night, all over the world, offering support, advice, sharing information, celebrating the good news and sending flowers to bring a smile to our faces when we needed cheering up. 

Thank you all, from the bottom of my heart and on Steve's behalf. You are truly wonderful people.

Death comes to all of us sooner or later.  In Steve's case, it came a lot later than we expected in terms of years post-diagnosis.  Although his lifespan was cut short probably by about 20 years or so, it feels like we managed to make up for that lost time with everything we've crammed in since 2009.  

However, Steve's death also came sooner than any of us expected. He'd watched England's handsome victory over Italy in the Six Nations rugby tournament the day before he died.  We'd exchanged Valentine cards that morning.  We'd had a discussion that evening about converting the first floor bedroom into a bed sit so that he didn't have to climb Everest every time he needed to visit the bathroom or wanted to work on the computer in the loft.  A spare table top was pulled out of storage, ready to take upstairs the next day to put the plan into action the next day.....Even then, he was still looking forward and being positive.

The following morning, I took him a cup of coffee in bed and he told me about a dream he'd just woken from...a dream in which he had been trying unsuccessfully to arrange numbers in the right order so as to open a door.  Less than half an hour later he was dead.  Perhaps during that short interval, he had found the right sequence, put the numbers in order, opened the door in his mind and decided it was time to go through.....

In any event, he died as he wished, not in pain, not drugged beyond consciousness, at home, in the place of his choosing.  I can't think of a better way to finish the journey of a lifetime.  Perhaps we should think of it as a happy ending, in the circumstances :)

A celebration, tears, smiles and laughter...

First of all, a big thank you to all those who joined us on Thursday to celebrate Steve's life.  The service room was packed - around 90 people - all of whom knew Steve in one capacity or another.

As well as the Wrides of Oxford, Frome and Bristol and two of my cousins, there were friends going back to our respective school days; friends from our student days from the schools of Architecture and Planning at what is now Oxford Brooks University; friends and neighbours from the West Oxford Community, including the local school where Steve had been a governor and the local community art group wocART, of which he was a founder member.

We were also joined by people who knew Steve from our respective workplaces over the years - our little shop Glossies, the City Council, the Historic Towns Forum and the Planning Inspectorate.  Then there were people we had met through mutual friends who soon became an important part of our own lives.

Katie's former school friends came too, and the children of friends who have grown up knowing us as part of their parents social network.  Some of them even brought their own children to the post service gathering, so it was a real multi generational celebration!

The service was led by Pat, a humanist celebrant who had spent a long time talking to us to get to know Steve as a person.  Her love, care and sensitivity showed clearly in the way she led the celebration and helped us through the tributes, music, tears, smiles and laughter along the way. Although not a religious service, there was also time for quiet reflection and individual prayer for those who have a faith.

The music was very much an integral part of the occasion, directly linked to some aspect or another of Steve's life.  Erik Sartie's Gymnopedies piano pieces (the only music Steve had actually requested whenever I had tried to tie him down on the subject); John Martyn's hauntingly beautiful song "I Couldn't Love You More" from our iPod music collection; Swing Low, Sweet Chariot - which as every rugby fan will know, echoes around the stadium whenever England is playing an international, such as the Six Nations match against Italy, which Steve had enjoyed watching on TV the day before he died.

Steve was keen that everyone left the service on a more upbeat note, so we went out on a classic - Not Fade Away - with versions by the Stones and Buddy Holly, a song directly inspired by Steve's final Valentine card which he designed, printed and gave to me on his last full day of life.

There were tributes from Steve's brother Martin, who spoke about his "Big Brother", our niece Heather who told the fable of the elephant and the humming bird, inspired by Steve's bravery in taking part in clinical drug trials in the hope that his contribution would one day help find a cure for mesothelioma.

Jack and Katie also spoke from the heart, talking about their relationship with Steve and what he had meant to them.  Not an easy task in the circumstances, but I know that their words reached out to everyone in the room.  I am so very proud of them and I know that Steve would have been too.

I managed to speak my tribute Doing Something Positive without completely dissolving in tears, although I came close from time to time.  It felt like I was addressing a sea of faces, but from time to time a face in the crowd would come into focus, lit up by memories of times shared with Steve that were special to them.  And we all remembered the happy times, as well as feeling the loss of a husband, father, brother, uncle and dear friend.

All the tributes from the service will be added to the blog over the course of the next few days, along with some of the lovely words you have written to me in cards, letters and emails, or posted online.  I think they add an extra dimension to the person that many of you will only know through the blog, because of his mesothelioma journey.  

It was wonderful that so many of you were able to join us after the service in the Punter, our local riverside pub, to raise a glass in honour of Steve.  We took over the place for a couple of hours before people had to head off home, many to far flung places.  Those who were staying on or lived locally came back to our house afterwards to continue the celebration, which was lovely.

I also know that there were many who were unable to join us at the event, but were there with us in spirit, raising a glass or cup to Steve all over the UK, in Europe, Australia, USA, Canada, and even one in an airplane en route to Colombia. Thank you for keeping us in your thoughts .

I have been thinking about whether the blog should end now that Steve's mesothelioma journey is over, but there will still a few more strands to share with you from time to time, after the tributes are posted.   In particular, news of Jack's cycle ride in L'Etape du Tour 2016 to raise money for Mesothelioma UK in Steve's memory - the number of donations and money raised to date has literally gone through the roof!  Thank you all so much for your generosity.  

Donations have also been made in Steve's memory to other charities and I'll let you know the outcome of those in about a month's time, if I can track them all down.....

The family is giving some thought about where to scatter Steve's ashes, and the creation of a more lasting memorial to him which other people can enjoy too.  It would be good to think that some of you will be able to join us when it is eventually dedicated - although that will be some time into the future I imagine.

In the meantime, I do hope you will enjoy reading the tributes which I will post over the next few days...I know they will raise a smile and even a gentle laugh, as well as maybe a tear or two.  Much love to you all, especially the meso warriors, their families and friends and to our family and friends who helped make Steve's life celebration a truly memorable occasion xx

Not just any old birthday....

When Steve was diagnosed with mesothelioma he was 62 years old.  He knew that the median life expectancy for those with the disease was 12-18 months and that only a small percentage of those diagnosed would still be alive five years later.  He didn't set a target, but he did say that he would "settle for 70"....he'd like to be around longer, but he could live with that....

Today would have been Steve's 69th birthday. Tomorrow, his funeral will take place at 3pm, on the third day of the third month.  Tomorrow will also the first day of what would have been his 70th year.  If you look back over the blog, he certainly did "live with that" for the best part of seven years, far longer and far more fully than we could have imagined back in 2009.

We have all been very touched by the overwhelming response to news of Steve's death and comforted by the many hugs - real and cyber - which have helped us keep going over the last couple of weeks.

Tonight Jack, Katie and I plan to go out for a meal to celebrate Steve's birthday.  Tomorrow, we are looking forward to seeing many of you at the service to celebrate his life and to raise a glass to him afterwards. I know there will be tears, but I also know there will be smiles and hopefully some laughter as he would have wanted.  

For those of you who can't make it for whatever reason, we know you will be with us in spirit.  I hope to share some of the tributes with you in my next post.  

But for now, "Happy Birthday Steve".....you will be in our hearts as we celebrate this special day.

With happy memories of a short ride in a fast car, last year :) 

There and back again....

First....A heartfelt and very big thank you for all the lovely cards, messages and flowers - so many, we have run out of vases!  Steve would have been very touched, as are Jack, Katie and I.  

Thank you also for the donations in Steve's memory which are already flowing in.  So good to think that the money will go to very worthwhile causes.

As my Facebook friends will know, I've had an email malfunction over the last few days and my messages about access and parking arrangements for the funeral and after service drink have stayed in my "Outbox".

If you plan to come to Steve's funeral/memorial service, I hope you will find the following information helpful.

South Oxfordshire crematorium/memorial garden is set in parkland, in the middle of the countryside so only accessible by car/taxi. There is extensive parking to the rear of the building (follow the signs), plus toilet facilities, disabled access and a hearing loop inside the building.  

Please congregate in the parking area until you see the hearse arrive, then follow us into the venue.  The service will not take more than an hour (maximum).  When it’s over, we will travel back to Oxford.  Jack, Katie and I will join you in the pub around 4.30 pm.

On-street parking in West Oxford is mainly restricted to residents and visitors with a permit.  If you are going to join us for the toast to Steve's memory in the pub after the service then, on your return to Oxford, please leave your vehicle at Seacourt Park and Ride, which is off the A420 Botley Road (there is a dedicated P&R lane off the slip road from Botley A34/A420 Interchange).  From there you can either walk to the pub on Osney Island (about a mile/18-20 minutes easy walk) or catch any of the buses from the P&R or heading into town along Botley Road.  

Alight at Osney - you will see a church on one side of the road, allotment gardens on the other, and Osney Bridge over the Thames in front of you. Cross the main road and head for the river.  The Punter fronts the Thames on Osney Island, at the corner of East St/South St.  

In addition to the Park and Ride car park, there are a limited number of free parking spaces at West Oxford Community Centre which fronts Botley Road, close to the Osney Island pedestrian crossing.  Waitrose “customers” can leave cars in the supermarket car park (also off Botley Road) for up to 90 minutes.  The Station (pay) car park is at Becket Street, closer into town, accessible off the roundabout near the railway bridge/station approach.

If you have mobility problems and need to park your car near the pub or are staying in this area overnight, I can provide a Visitors Permit which allows you to park in residents parking areas anywhere in West Oxford.  The permits are valid for 24 hours from time of arrival.  Let me know if you need one. However, I don’t have an inexhaustible supply of permits, so please request only if needed! 

If you haven’t done so already, please can you let me know whether you will be joining us for the toast in Steve's memory after the service so I can advise the pub about numbers.  No formal catering as such, but the pub does good food if you are hungry.  There is a small pub garden to sit outside if the weather is fine, or we can overflow onto the banks of the Thames (but please don't fall in!)  

I hope to sort out a glass of prosecco/juice or something similar for everyone to toast Steve's memory, some time between 4.45pm and 5.00 pm.  

A celebration for Steve

Stephen Wride

2nd March 1947 - 15th February 2016

Linda, Jack and Katie invite you to a service celebrating Steve’s life

3pm, 3^rd March 2016

South Oxfordshire Crematorium and Memorial Garden, 

Garford, Abingdon OX13 5PA

www.southoxfordmemorial.co.uk

and raise a glass in his memory from 4.30 pm onwards at

The Punter, 7 South Street, Osney Island, Oxford OX2 0BE

www.thepunteroxford.co.uk

RSVP via the blog, a PM to Linda on Facebook, or email

Family flowers only

Any donations in Steve’s memory may be made online to the following charities

Cancer Research UK www.cancerresearchuk.org

Sobell House Hospice, Oxford www.sobellhouse.org

Oxfam www.oxfam.org

Mesothelioma UK via Jack’s L’Etape du Tour 2016 Challenge

www.justgiving.com/LEtapeduTour2016

or by cheque c/o Reeves & Pain,
288 Abingdon Road, Oxford OX1 4TE

Not fade away

Six years and eight months almost to the day since diagnosis, Steve's mesothelioma journey is now over.

He died at home, in the familiar and comfortable surroundings of our bedroom (as he wished) shortly before 9 am yesterday morning.

The last creative thing he did was to design and print a Valentines card which he presented to me on Sunday, St Valentine's Day.

It was inspired by the lyrics of the Stones 1963 single Not Fade Away.  I cannot think of a better tribute to mark his passing, so will share it with you now. Some of you will recognise my nickname :)

I'll post details of the funeral arrangements in due course and - if I can bring myself to write more - how we spent our remaining time together.

A heartfelt thanks from me, Jack and Katie for all the love and support that has been flowing our way from dear friends all over the world.  

In the words of the song "A love that's real not fade away".  

With love to you all xxxxxx

One step forwards, two steps back as life goes on...

I had intended this blog to be about the nice things that are happening as life goes on after the DNR discussion - weekend visits from Jack and Katie, our grown up kids; Katie's successful property search (selling one flat and buying another in the space of a week, subject to contract); enjoying the Six Nations rugby fest with family and friends; watching the garden spring into life; looking forward to Steve getting his mojo back with music therapy.....but things haven't quite worked out as anticipated.

Over the last week or so, Steve has been complaining on and off about stomach ache and it's become worse each day, with less food being consumed as time passes. 

Although he had been looking forward to it, he didn't feel well enough to go to his first music therapy session on Tuesday, so I had to phone the hospice and cancel. 

He took things easy on Wednesday and managed to make it to the hospital yesterday (Thursday) for the first session of this round of radiotherapy treatment, albeit using the wheelchair for the first time - unplanned...all the nearby Disabled Parking spaces were full and the only space we could find was some distance from Radiotherapy....he knew he couldn't make it under his own steam.  

However, food-wise he only managed a couple of spoonfuls of yogurt for breakfast and barely touched his lunchtime soup, relying on Complan instead. The stomach cramps were worse by the time we returned from hospital and he went to bed early without any food or an evening Complan.  He hardly slept at all and was sick when he first woke up, and again after having a cup of coffee in bed.  

For the first time since diagnosis, I asked the GP to do a home visit as I was increasingly concerned about Steve becoming seriously dehydrated. The doctor has precribed medication to help the digestive process, so I'm hopeful that will do the trick when I can pick it up tomorrow (no pharmacist available to dispense at our local chemist this afternoon).

Steve has spent most of today in bed; eaten nothing and only managed to keep down small sips of water.  Not a good day. Radiotherapy session 2 which should have happened early this evening has been cancelled. They will add an extra session on to the end of the course next week to make up for it, assuming Steve is well enough to continue by then.  

We are now sitting here in limbo....Steve has come downstairs, but still feels unable to eat anything or take in large amounts of fluids. Stomach cramps persist.  He's zizzing off every now and then, probably as a result of the additional doses of morphine taken on an empty stomach.  

Here's hoping for a better day tomorrow xxx