Friday 26 February 2016

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.  

Sunday 21 February 2016

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, 3rd March 2016
South Oxfordshire Crematorium and Memorial Garden, 
Garford, Abingdon OX13 5PA

and raise a glass in his memory from 4.30 pm onwards at
The Punter, 7 South Street, Osney Island, Oxford OX2 0BE

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
Sobell House Hospice, Oxford
Mesothelioma UK via Jack’s L’Etape du Tour 2016 Challenge

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

Tuesday 16 February 2016

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

Friday 12 February 2016

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

Sunday 7 February 2016

The DNR discussion

It was difficult to know how to begin this post, so I might as well jump in with both feet by stating the blindingly obvious. Like it or not, we're all going to die one day.  With few exceptions, we have no way of knowing or controlling when that will happen.  However, we can express a preference about where we die and how we are cared for towards the end of our lives.

Like the majority of people in the UK, Steve would like to die at home in familiar surroundings, with people around him that he knows and loves. Having made that choice, issues around resuscitation as and when the body starts shutting down of its own accord are somewhat academic.  

If an ambulance was to be called in an emergency, the chances are that Steve would be dead before it arrived. If he was still alive and the crew thought he had some chance of survival (notwithstanding his terminal cancer) he would be taken to hospital, shocked, thumped on the heart, intubated and, if resuscitated, taken to intensive care where the chances of him surviving any length of time are remote in the extreme. In all likelihood, he would die in hospital - the last place he wants his life to end.  

When death is imminent at the end of a terminal illness, such intervention would be more likely to prolong the process of dying than extend life in any meaningful way.  Considered in that context, having a note on his file saying "Do Not Resuscitate" (DNR) is a no-brainer.  So that's what he's decided to do.

Sarah the palliative care nurse was at pains to point out that DNR does not mean that treatment would be withheld.  Steve would still have whatever medication or other action thought necessary to make him as calm, comfortable and pain-free as possible as the end of life approaches.  He would also have the comfort of knowing that no one will insist he is taken to hospital and subjected to intrusive and ineffective intervention, when what he really wants to do is finish his days in comfort at home. 

Before having the discussion with the palliative care nurse, my instinct would have been to urge him to opt for whatever gave him the chance to stay alive a bit longer, including resuscitation.  Having a DNR note on his file would have felt like giving up.  After such a long Meso journey on which Steve has already survived what is now approaching seven years against all the odds, and having enjoyed life for much of that time, it would have seemed strangely counter intuitive. However, having thought it through, and in the light of his wish to die at home, it now feels like the right choice.

It would be different of course, if his cancer was curable or capable of being managed long term without compromising the quality of life. Should research deliver drugs capable of doing that - drugs which he could take - then it would be a different matter entirely. That time seems tantalizingly close with the development of immunotherapy and treatment targeted to meet the individual's specific needs. But it's not happened yet. Until then, the DNR note will stay in place and we will get on and enjoy life as best we can.

Indeed, we have been connecting with people and events in spite of Steve's declining health.  More of that in my next post.  Until then, big hugs to the Meso Warriors and love to you all xx

Friday 5 February 2016

Lots of thank yous

We had our discussion today with the palliative care nurse about "Do Not Resucitate" and I'll write about that in another blog post.  

Fear not!  It wasn't exactly easy but it wasn't as difficult as we were expecting ....and don't for one moment think this discussion means that Steve is on his death bed. He isn't.

Today, we simply want to say thank you.

Thank you to the Facebook Meso Warriors who sent two big bunches of flowers, plus chocolates and butterflies, to put smiles on our faces.  They certainly succeeded. There were some tears too. We were very, very touched.  You are very, very wonderful people xxx

Big thank you also to the additional people who have sponsored Jack's cycle ride L'Etape du Tour in July, where he will be cycling a mountain stage of the Tour de France to raise money for Mesothelioma UK.  Cheers to Carolyn and Jerry in California, Baz in Somerset and the anonymous sponsor in the USA whose dad has been battling meso for a couple of years. So glad the blog offers you some inspiration x

Tuesday 2 February 2016

Getting the results and going forward....

We heard about Steve's scan results at the hospital appointment last Thursday.  Our GP phoned to tell us results of his blood test on Monday.  I haven't posted about either of them until today as it's taken a bit of time to digest all the information and to sort out ways of going forward...but we've reached that stage now, so we can now share with you.

The scan results

As expected, the cancer continues to progress.  The area causing most concern now is the external lump where the meso has grown out of the chest cavity, through Steve's chest wall and ribs.  What started out as a small circular bump visible just above the nipple (July 2014) has now grown and spread into a large lump extending upwards to his collar bone and outwards towards his armpit.

We could see clearly on the scan where the lump is pressing on the nerve bundle which travels from his neck down the right arm to the hand.  It is pressure on this nerve bundle which has caused occasional cramp and numbness in Steve's right hand and arm - not all the time, but when he gets into certain positions. 

Unless something is done to halt growth, continued pressure from the lump will result in nerve damage, pain and probably paralysis.  So the way forward is to zap it with radiotherapy using a Linear Particle Accelerator (LINAC).  

The last radiotherapy in this area was well over a year ago and it shrunk the chest lump significantly, so hopefully there will be a repeat performance this time around, although the approach will be different...This time, the beam will travel through and through the body avoiding the spinal cord and gullet, rather than dealing the lump a glancing blow, skim-hitting the raised area without penetrating the body. Because of the level of penetration, the side effects of treatment will be more noticeable than before.   

The radiotherapy planning appointment was yesterday (to set up Steve in the correct position) and the course of treatment will last five days starting on 11 February, with two days off for good behaviour over the intervening weekend.   

There was some good news too.  No sign of any obstruction or constriction to the food pipe (gullet) due to tumours, so the swallowing problems are not a direct result of cancer growth. The air passage to Steve's lower left lung (which had been reduced to a tiny hole, the size of a pin prick) has been opened up by the most recent course of radiotherapy in December 2015 and is now clearly visible as a black hole on the scan.  This means his lung is no longer in imminent danger of collapse, much to our relief.

We put the consultant on the spot about his life expectancy, knowing full well that she can't predict accurately or with 100% confidence..but we felt we needed a better idea of how much longer Steve can expect to live.  The answer was more than weeks but probably less than a year  Whether it will longer than six months or less, is anyone's guess. But at least we have a bit more time to get ourselves sorted out and prepare for the next stage of the meso journey. 

The blood tests results

The blood tests showed up several things: 

  • raised white blood cells suggesting an infection (not a raging infection, but may explain the wheezy cough and thick, coloured phlegm)
  • lower than average protein levels
  • high than average calcium levels  

Steve is now on a course of antibiotics to sort out the infection (although swallowing large capsules is proving a challenge - should have asked specifically for syrup).  

We will be getting an appointment with the hospice nutritionist to discuss how to improve his protein levels (and yes, we are using the Nutribullet and blender, making soups and smoothies, and he's having Complan twice a day as a meal supplement as well as full fat milk, full fat yoghurt, savoury pates, chocolate and sweet soft deserts - the caramel pannacotta is going down well!)... There's rice pudding and porridge still to try, but other than that I've run out of ideas so need some more suggestions from an expert. 

The elevated levels of calcium rang alarm bells with me. Untreated, high levels of calcium in the blood (caused by the cancer "eating" bone) can cause increased drowsiness and ultimately patients can become comatose and die.  However, I have since been reassured by Sarah the palliative care nurse, that although raised above normal, Steve's calcium levels are not so high as to cause concern.  They may have been like that for a while...we don't know...he hasn't had blood tests for over a year.  They will now test and monitor bloods more frequently and regularly, and take action if and when necessary.  It is treatable using bisphosphonates.

Practicalities and psychological therapies

We are moving forward on the practical front too. The pee bottle (sorry - portable male urinal) arrived today.  He doesn't need it now but its here, ready for those times when Steve can't get upstairs to the loo quickly enough.  

Another inflatable cushion is on its way - one to sit on, rather than lean back against.  He can also use it as a foot support when lying in bed.  Now the pressure sore on his back has healed, its all about prevention of sores developing on other bony bits - bottom and heels being the most vulnerable areas in addition to his spine.

On the psychological front, Steve's opted to try some music therapy sessions at Sobell House, our local hospice.  Tom, the music therapist came today to explain how it can help people in Steve's situation - from listening to old favourites which spark happy memories, to bashing drums for an hour to vent anger and frustration, via writing songs to express emotions that you might find difficult to articulate in other ways...and in other individual ways. They will transport Steve to and from the hospice and feed and water him while he's there.  Sounds pretty wonderful!  All kicks off this time next week.  Watch this space for the first composition :)

On Friday, we are having a session with the palliative care nurse about "Do not resuscitate" (DNR) considerations - a question that came up in a phone call from the GP on Friday, which I could not answer.  We know what the words mean, but have not really thought around the issue and how to arrive at a decision that's right for Steve.  Time for a full and frank discussion to make an informed choice.

Thank yous and cyber hugs

I must also say some thank yous Jean, another sponsor for Jack's Tour de France cycle ride; to Margaret and Tracy for your thoughtful Facebook private messages; to all our friends who have written such lovely letters and emails and cheered us up with phone calls and messages; to Chris who diverted on her way home to Somerset to call in and say hi, and to the meso warriors for their support, as always.  And special cyber hugs for Mavis to congratulate her on her British Citizenship Award and to Amanda and Ray, who have been having a tough time.  Much love to all x