Raising a glass to Ben at the Wimborne Folk Festival

Ben was brought up in Wimborne in Dorset, one of those sleepy picturesque English market towns. It was where he roamed in his adolescent years, and where he honed his pub-going skills with his mates during his late teens/early twenties before I whisked him off to Kent to a completely new life in a sleepy picturesque English market town. Now, there is a weekend in Wimborne, once a year, when it aint so sleepy no more and the cobbled streets and alleyways heave with revellers, musicians and lovely nutty folk who wear bells on their ankles and like to bang sticks together as they dance.

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Morrissing away

This is called the Wimborne Folk Festival. Ben was very fond of the festival – he had happy (albeit blurry with some falling down) memories of going there. We even went together a couple of times, as you see…

Wimborne Folk Festival 2005

Wimborne Folk Festival 2005

So when the festival came around, a few months after Ben died,  I decided to go and drag as many family and friends along as I could (actually nobody needed dragging), and we all got together, in a pub, to raise our glasses to our gorgeous Ben, who would have so loved to be there with us, being part of our lives still and catching up over a pint. Here is a pic of our assorted party, squashed in a corner on some hay bales.

Family, young and old. Friends, new and old. All raising a glass to Ben at the Wimborne Folk Festival - June 2013

Family, young and old. Friends, new and old. All raising a glass to Ben at the Wimborne Folk Festival – June 2013

So, it was great, and we decided to do it every year. Except last year I messed up – double-booked, and instead of pint-supping in Dorset, I was standing in the snow on Ben Nevis with my Dad. Oops.

I believe I've looked better

I believe I’ve looked better. Ben Nevis – June 2014

Ben’s family kept up the tradition though and had the party without me, good on ’em. This year I AM going to be there, and so are some friends and some family. And this rambly post is really just to invite anyone else who’d like to come and sit in a pub with us, and drink to Ben and say nice things about/insult him. The details are…

The Olive Branch Pub*– East Borough, Wimborne, BH21 1PF

Meet somewhere between the loos and the fourteenth man from the left’s armpit

Saturday 13th June

3pm and thereafter til the kids go crazy

 

*I know, I know – this aint a ‘proper’ pub, anmd sadly not one Ben would have gone to particuarly, but it’s our best shot at having room for a crowd, inc very small people. So let me know if you can come along (via blog comment, FB or whatever), or just come anyway.  Or…why not join us and Ben in spirit and take yourself to a lovely pub garden anywhere in the world and have a pint (other units are permitted) around 3pm BST and say ‘Cheers Ben’. Send us a pic and a hello if you do!

Pints

Pints. Quite possibly drunk at a Wimborne Folk Festival once upon a time.

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So proud

Yesterday I received my second order of Ben’s blog book from the printers – orders just keep coming in!

When I made my first order I only asked for 30 copies, thinking that would be enough for the close friends and family I’d imagined would want to buy it as a momento of Ben. Then the orders began to come in: from old colleagues, from blog followers who’d never known Ben, from parents of Ben’s old school friends – all sorts of people.

And so far I’ve sold 75 copies! Amazing, and I’m so proud of Ben and I’s mutual achievement in creating these gorgeous books.

This also means that thanks to the extra £1.50 that was added to the price of each book, I’ve got a donation of about £120.00 (still doing the final calculations as some people added extra) for the excellent melanoma advocacy and support charity, Melanoma UK.

And I now have more to sell. If you’d like to order a copy, all the details can be found here.

GO ON!! I love getting orders! 🙂

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Snap them up people!

I’ve sold 66 copies of Ben’s book so far! Way more than I imagined, though not surprising when I think of how many people loved Ben and became avid followers of the blog.

I have a few copies still to sell and we can’t let them go dusty in the box so if you’ve been meaning to order one and just haven’t got your arse into gear yet then get on it!!

Just to remind you, the price is now £18, £1.50 of which goes towards Melanoma UK, a charity which supports melanoma patients and carers and fundraises for melanoma nurses and research.

To make an order, please email me at mamuvblog@outlook.com.

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While stocks last!

Just a reminder that the book version of Ben’s blog is now available. If you would like to order a copy please email me at mamuvblog@outlook.com.

Sally

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‘Me and My Unwelcome Visitors: The Book’ is now available to order

I’ve finally done it! The long-promised book version of Ben’s blog is now available to order. I’m extremely proud of it (and its author) – it’s a lovely object, and a tribute to the brilliant writer Ben turned out to be. I hope lots of you will buy it, treasure it, and turn to it from time to time  throughout the years when you want to remember Ben.

So here’s the lowdown…

Description

– A quality A4 size hard back with colour photographs throughout

– At 192 pages, the book includes all of Ben’s posts and a few of mine, concluding with the ‘Beautiful Goodbye’ post about the funeral. All of Ben’s photographs are included, as are all the comments by followers of the blog.

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Price

– £23.00 for the book (plus an additional £4.50 if you would like me to post it to you at a UK address*)

– This price covers the  price of printing the books, plus a £1.20 donation to  Melanoma UK.

* For postage of multiple copies, or postage to addresses outside the UK, the postage charge will be greater

How to order

If you would like to place an order, please email me at mamuvblog@outlook.com with the following details:

  • Your full name
  • Your telephone number
  • Number of copies required
  • Whether you require it to be posted
  • Your postal address (if postage required)

I will send you a confirmation email and information about how to pay. Once I’ve received the payment I will send the book(s) out to you.

That’s all I think – very excited to start receiving orders!

 

 

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A year later

Hello there.

It’s 3rd January 2014 – exactly a year since our beloved Ben died.

To mark the day, and to celebrate Ben’s legacy – his excellent blog, I thought I would add a new post about what this past year has held for me, Saskia and our family.

Life for Saskia and I

It’s still hard to believe that Ben has really gone and that I won’t ever again be able to squeeze his hand or give him a hug or mess up his hair like I used to. I can imagine him vividly though and often do – and I smile to myself and to my ‘spirit of Ben’ which is always with me.

Surprisingly for me, this year has contained more joy than sadness. I expected the weight of grief to come hard, to feel pain and sadness in great waves – for weeks, for months, for years. But instead it’s been a happy year – sad at times but mostly happy. It’s a fact that’s been been hard to come to terms with and I worried about it a lot at the beginning, feeling guilty that I wasn’t suffering as much as I should be. After a lot of reflection, and talking to good friends, and some counselling too, I’ve come to accept that it’s OK to be a happy widow – enough to ‘confess’ it in public like this, though the guilt gremlin does still haunt me from time to time.

Above all else, the reason for my happiness is Saskia. She is such a bundle of absolute joy, and with her around there simply isn’t space or time to get down and feel miserable. I aim to be a happy and playful parent for her sake, and she makes that job so easy! Here’s a fabulous picture that for me sums up the fun and adventure that life with Saskia has been this year…

Saskia and I loving life - Red Sea, Oct 2013

Saskia and I loving life – Red Sea, Oct 2013

If I imagine life without Sas then it really would have been a very bleak year indeed. I am so lucky to have her. And not just her…my friends and family have been AMAZING in their support and generosity.

Saskia’s own journey as her mind develops and little by little she has little shifts in understanding about what has happened to her Daddy is both moving and fascinating. She was only 16 months old when Ben died and too young to understand – this year she has thrived and showed no signs of suffering thankfully. Sadness may come for her in time as her understanding grows, but for now she’s doing fine.

My own blog – ‘These Widows Shoes’

Inspired by Ben, I decided back in May to have a stab at writing my own blog about life as a widow. For a long time I kept it to myself and just a few friends, but recently I’ve been brave and invited Facebook friends to view it – and now all of you reading this too. I’d love you to have a look and pass it on to your friends if you like it. It’s mostly reflections on widowhood, with a lot about Saskia’s journey too. It’s called ‘These Widow’s Shoes’ and you can visit it by clicking here.

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‘These Widow’s Shoes’ Home Page

‘Me and My Unwelcome Visitors’ Lives On

Ben’s blog still gets lots of visits every day. It has been visited from 86 countries to date and has had over 32,000 hits. One thing that I am delighted about is that it has gone right up the Google rankings, appearing second in the list for the search terms ‘melanoma blog’ whereas a year ago it would have been nowhere to be seen. I’ve been tweaking it here and there, and getting other sites to list it (see this one for example) and it seems to be working! From time to time I get comments on there from people whose lives have been touched by melanoma and who have found reading Ben’s words a help. What an amazing achievement Benj – I’m so proud of you!

One of the changes I’ve made to the blog is the addition of a Twitter feed (see the top right column of the home page). Under the username @melanomablogger, I’ve been using it partly to publicise the blog, but also more recently to share information and raise awareness about melanoma. This was something that Ben had started to do himself with his The Enemy page and I’m sure if he’d survived he’d be busy doing this himself. If you’re into the Twitter thing, please follow me and help me spread the message – if you’re not, maybe this is the moment!

A major plan involving Ben’s blog that I am sorry to say I’ve been very slow at getting on with is getting it published in book form. I got started on this back in the summer but somehow I got a bit overwhelmed with it and had to take a step back. But a new year has brought new resolve – I will get it done (with the help of some family and friends who have offered various services) and hopefully in the not too distant future I’ll be able to announce it’s publication on here and you can all order your copy!

Celebrating Ben’s Life

Since the funeral I have been determined to turn negatives into positives whenever I can. One example of this was in June when we had a ‘Raising a Pint to Ben’ get together at the Wimborne Folk Festival. Ben loved the festival – it was a part of his youth and an event that he proudly introduced me to when we first started going out together. I’d already decided to go with a few friends from Kent for my birthday when I realised we should use the event as a good excuse to bring together Ben’s family (young and old) and friends (old and new) to remember and celebrate his life. It was a gorgeous sunny day – Ben’s heart would have swelled with love and pride to see us all there together. Here we all are….

Family, young and old. Friends, new and old. All raising a glass to Ben at the Wimborne Folk Festival - June 2013

Raising a pint to Ben at the Wimborne Folk Festival – June 2013

It was Ben himself who set the precedent for positivity, as his blog testifies and as was reiterated many times during the funeral service. It has moved and inspired a great many people – many of whom barely knew Ben in his lifetime. One such person was my very good friend Pete Gold, who I met at university and then shared a house in London with for a couple of years.  I was really touched that he made the effort to come to the funeral (as did many of my old friends), despite the fact that I’d hardly seen him for years. It was lovely to catch up briefly, but again the months went by without seeing each other and it wasn’t until October that we finally managed to organise a get together. Not long before we were due to set off home after a weekend visiting Pete’s family, Pete shyly informed me that he’d composed a song in memory of Ben and would I like to hear it. I was so moved that he’d done such a thing that I think I was weeping before he even had a chance to play it to me! The music and words are just stunning – it’s called ‘Live Forever’ and is a 4-part choral piece (forgive me if I’ve described that crudely Pete, I’ve no idea if that’s the proper terminology!). Pete has recorded it with his local choir, The Rickmansworth Players Choir, and we are planning to get together early this year to somehow release the recording as a single so that it is available to buy, with the proceeds going to charity. So watch this space – I’ll let you know via the blog and Facebook when it’s available.

The Burial Ground

The beautiful Woodland Burial Ground where Ben is buried has played an important part in our lives this year. For me it has become a pilgrimage that I make every few months when I am visiting Ben’s family in Wiltshire and Dorset. From Ben’s Mum’s house, where I usually stay, it’s a 45 minute drive over sweeping hills and fields, up and down lonely narrow lanes, through sun-dappled woods – it’s just lovely. It’s one of the rare opportunities for me to be alone with my thoughts and it’s such a perfect way to frame my visits to see Ben. After spending some time at Ben’s grave I like to walk around the site, finding a bench at the top of the hill where I can look down over the burial ground, across to The Horns pub and the countryside beyond. I often take my journal and spend an hour or so reflecting and ‘chatting’ to myself and to Ben. It’s bliss – I feel so close to him there and so full of love and gratitude that he came into my life.

The burial ground and the Horns Pub have become a meeting place for the family as a whole. His aunties who live nearby visit weekly and keep the grave looking lovely, always covered in fresh flowers. Various family members meet there, and when Saskia and I are visiting we often get the family together for a meal and to visit Ben…

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Arranging and planting flowers in the sunshine – September 2013

During the year we decided that we wanted a rowan tree to be planted on Ben’s grave. It’s a colorful tree, with blossom in the spring, berries in the summer and red leaves in the autumn. We hope it’ll be home to lots of wildlife and will offer us a lot of comfort when we visit during the seasons. The tree is very young and obviously bare now in the winter…

Grave

But in years to come it will hopefully be as stunning as this one…

A mature Rowan tree

A mature Rowan tree

We also finally found the right words to put on the plaque, which was put up in October…

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The plaque which stands just in front of Ben’s tree

The quotation is from a Red Hot Chilli Peppers song, ‘Venice Queen’. I was stumped for ages as to a quote that would be personal to Ben and yet also fitting for this context. After hoping that it would just ‘come to me’ for months, I realised it wasn’t going to happen I sat down to start wading through Ben’s albums to find the right words. Ben must have been helping out somehow because the first album I looked at – ‘By the Way’ by the Chilli Peppers, a really important album for Ben, gave me what I was looking for. Besides the fact that Ben loved the sea, and surfing, the deeper sentiment here couldn’t be more perfect. Every day Ben influences me in positive ways, but the waves have travelled so much further – across the world via his blog, and into beautiful, timeless notes through Pete’s music.

You can read the rest of the ‘Venice Queen’ lyrics and watch a live version of the song by clicking here (our bit comes in at 6:29)

Fundraising

The waves that Ben made have also inspired many people to raise money for different charities related to Ben’s story. At the beginning of the year my brother David did the Tough Guy challenge raising £679 for Pilgrims Hospices and £840 for Cancer Research UK.

Dave doing his 'Tough Guy' pose

Dave doing his ‘Tough Guy’ pose – January 2013

In February Ben’s school friend Tanya, and her friend Sofia completed their 24 hour spin challenge – they covered the distance from their gym in Bournemouth to Pilgrims Hospice in Kent and back again – twice! They raised £1,269 for Pilgrims Hospices.

Tanya and Sofia spinning their way from Canterbury to Bournemouth and back in 24 hours

Tanya and Sofia spinning their way from Canterbury to Bournemouth and back (twice!) in 24 hours

Then in June Ben’s Mum, Delia, and two aunties, Claire and Maria, did the Race for Life, jogging (and a little bit of walking!) 5k along Bournemouth beach. They raised £461 for Cancer Research UK.

Maria, Delia and Claire looking over the sea from Bournemouth Pier after finishing the Race for Life - June 2013

Maria, Delia and Claire looking over the sea from Bournemouth Pier after finishing the Race for Life – June 2013

Ben’s cousin Michaela also did the Race for Life, running 10k in London, and raising £145 for Cancer Research UK.

Michaela and Georgina at Hyde Park after the Race for Life 10k - July 2013

Michaela and Georgina at Hyde Park after the Race for Life 10k – July 2013

In August, a friend of Ben’s from university, Kathryn, did the 100 mile London-Surrey cycle ride, raising an amazing £1,755 for Cancer Research UK.

Kathryn Daniels

Kathryn after completing the 100k London-Surrey bike ride

Also in August, Ben’s Grandad Ken sadly died. Ben’s Dad kindly suggested that the donations at the funeral be in aid of Pilgrims Hospices – we raised another £369 for this brilliant charity thanks to Ken’s friends and family.

Ken Edge

Kenneth John Edge

Then in September, on what would have been Ben and I’s 5th wedding anniversary, a team of Ben’s friends and I did a 10k Moonlight Walk along the Kent coast in aid of Pilgrims Hospices – together we raised £3,272!

The Moonlight Walkers team - Sept 2013

The Moonlight Walkers team – Sept 2013

Finally, to round the year off my ever-creative colleague from English in Action, Jacqui Miller, raised £75 for Pilgrims Hospices by selling Magic Reindeer Food!

Quite an amazing catalogue of achievement hey? And we’re not stopping there! Our next fundraising efforts will be this month, in collaboration with Ben’s favourite local pub, The Phoenix in Faversham. If you live anywhere near us, and fancy a pub quiz please join us on the 6th and/or 20th of January to show off your general knowledge and help raise money for Pilgrims Hospices.

Ben’s Facebook page

One last thing is that I just wanted to remind you all is that Ben’s Facebook page is still there for any of us to post thoughts, memories, photos or messages. Today would be a good day to post something if you feel inspired. Unfortunately this is only accessible to people who were already FB friends with Ben, although anyone can post comments on the blog at any time, or on my FB page if you like.

So there we are. I miss him so very much, and yet I feel he was such a force for good in my life that even though he’s gone he still makes me happy. I wish every one a very happy and healthy 2014!!

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Beautiful Goodbye

Over a month has passed since Ben’s funeral and during that time a few people have suggested to me that I should put the transcript from the funeral on the blog. There were so many unique and beautiful contributions to the ceremony that it seems right that they should be recorded here for those who were there to look back on, and those who were unable to attend to share. As unorthodox as it may seem to say it, it was a beautiful occasion, in a beautiful setting, with just as many smiles as tears. I have copied all the words that were spoken during the ceremony below. I have also included a photo of the burial site and a selection from the photo gallery of Ben’s life that we had up during the ceremony and wake for people to look at and add to. I would like to thank everyone who came along, especially those who came long distances, and endured the freezing cold and the mud to be with us and remember Ben. Thanks also for all the donations to Ben’s chosen charities, Cancer Research UK and Pilgrims Hospices – we collected £970 on the day. More  fantastic fundraising activities are still going on – news of these and links to their fundraising pages can be found at the end of this post.

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FUNERAL SERVICE OF BENJAMIN DAVID EDGE (1981 – 2013)

Friday 25th 2013, Wimborne and Poole Woodland Burial Ground

First piece of music to be playing as everyone arrives:  ‘Dawn’ by Carlos Nunez

Introduction to the Service led by Noel

Let us live in such a way

That when we die

Our love will survive

And continue to grow.

by Leunig

Good afternoon and welcome to Wimborne and Poole Woodland Burial Ground. My name is Noel and I’m an Interfaith Minister, which means that I respect the choices people make regarding belief and religion and that includes the choice to believe or not to believe in a God or afterlife. So whatever you hold be to be true, you are very welcome here today.

The music you have just heard “Dawn” by Carlos Nunez was played at Ben and Sally’s wedding.

We are here to acknowledge the passing from life to death of Ben David Edge. I know that Ben was loved and respected by everyone here today and also those not able to attend.

The loss of a loved one is always a shock, so I am sorry for any pain or sadness you feel today.

In remembering Ben please let this service be a celebration of his life, not only a mourning of his death. Although there may be sadness in our hearts that can bring tears, there is also space for joy as we remember the life that Ben lived. Let the two emotions share the same space in our hearts and let us remember Ben with fondness and love.

Times such as these allow our love and our kindness to come forward and be shared with all around us. The loss of someone we love can bring people closer together. When you share stories about Ben after the service, make a pledge to stay in touch and not be stranger as days, weeks and months go by.

 

Reflections and Poems from Ben’s Family and Friends 

Ben’s Aunts Claire and Maria:

Claire

Our family chain is broken,

And nothing seems the same,

But as God takes us one by one,

The chain will link again.

Maria

We cannot judge a biography by its length,

by the number of pages in it;

We must judge by the richness of the contents,

Sometimes the ‘unfinisheds’ are among the most beautiful of symphonies

Claire

Think of Ben as living

In the hearts of those he touched,

For nothing loved is ever lost

And Ben was loved so much.

Claire

I have many lovely memories of Ben but one that is very special to me is of when Ben was five years old and he came to stay for the weekend.

I decided as a treat to take him to the panto so off we went, just Ben and I to the Pavillion in Bournemouth. It was all going very well and we were having a great time when a character came on stage, one of the nasty ones that you have to boo and hiss at!

This character proceeded to tell all the mums and dads, and in my case aunties, that he was going to go out into the car park and let all our tyres down (cue lots of boos and hisses!!)

Well Ben just turned to me and said  ‘Auntie, can we go now please because that man is going to let our tyres down and we won’t be able to get  home!’

I spent the rest of the performance trying to reassure him that the nasty man didn’t really mean it and the car would be fine but I don’t think he really believed me until the show was over and he could see for himself!!

Just one of many memories of Ben, an adorable little boy who grew up into a wonderful young man,  I’m so proud to be his auntie xxx

ben

Aged 18 months

 

Maria (Read by Keith)

My memories of Ben

Ben was a cheeky, funny but sensitive little boy who was full of life & loved chocolate.

I looked after him when he was a baby and often pushed him down to the shops. I used to love it when people admired him and thought he was mine – I felt so proud!

Another fond memory was of him coming round to our house. I had to stand him on the coal bunker because our dogs were so much bigger than his and he was a bit unsure of them – but he felt safe up there.

One day he was helping his Dad out on the heather nursery, and came into the Bank where I worked to pick up some chairs for the potting shed. There was Ben, looking so cute in his little shorts & wellies, trailing mud all up the stairs, and yet taking his job very seriously like a little grown up man – we all thought it was so funny.

When he was about 13 he started to talk to me about music which was an important thing in my life.  I lent him my Def Leppard and REM albums which he really liked. I thought then he seemed so grown up and was so pleased his taste in music was going towards rock.  I am proud to say I bought him his Guns & Roses Spaghetti Incident Album – that’s my boy.

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Working on the nursery – about 2 years old

Ben’s cousins, Anthony and Theresa (READ BY NOEL)

The Ladder into the Trees: 

We arrived at the nurseries in the woodland where our cousins lived, full of excitement for the newest adventures the eldest of us had dreamt up. Ben was always finding things for us to do in and around the woods where they lived, and today was no exception.

Within minutes we were following Ben into the woods, like Robin Hood leading his merry men. Deeper we went, squelching through the dead leaves. Past the pig pen where I had, on a previous adventure attempted to pull the pig’s curly tail straight again, and deeper still, until there in the distance we saw it: The ladder.

We cautiously approached, Ben striding confidently before us and my brother doing the same after him. Shadows loomed overhead as we began walking beneath platforms suspended in the trees by some unknown force. Up shot Ben like a rat up a drainpipe, Anthony followed after him up into the unknown like a loyal soldier following his captain. I stood still. Nothing on earth would make me climb that ladder, nothing that is, except Kat.

I was rooted to the spot, refusing Ben’s offer of help and ignoring my brother’s teasing, when up popped Kat’s head. She had been there for hours and was well accustomed to tree dwelling life. Well, I was not about to let the youngest of us show me for a coward. So I made my slow and rather wobbly way up the ladder. At last we were all together on the platform, Ben breathed deeply surveying his kingdom below.

All three of them scampered like squirrels about the platforms as I braved a smile and sat firmly in one place, ignoring the fact that I would at some point have to make the return trip down the ladder.

After some time the boys became restless. There was of course a rope hanging off the furthest platform, which Ben demonstrated climbing down, Anthony doing the same being born half monkey himself. I, of course refused and was greatly relieved when Kat did the same. It was only after a while, as Ben, Kat and I were playing a game of eye spy that we noticed one of us was missing. Ben peered through the trees from the above the Autumn coloured ground calling out for his lost cousin.

It was then we heard a bark. Captain Ben cupped a hand to his ear and listened, another bark followed by a faint squeal. Then everything seemed to happen at once. Through the trees came Anthony, screaming with equal parts glee and fear. Then came the barking Bonnie, the neighbours boxer dog. Ben grabbed the rope and swung in true hero fashion to the ground and went tearing off calling the dog’s name and trying to stop her from eating his younger cousin.

I stood trembling with fear watching as prey, dog and hero vanished from sight. Kat appeared below me before I could notice she had left and ran off in their direction. Although I stood upon the platform feeling useless, I knew without a doubt that my brother would be saved. Our elder, our captain and our hero Ben would save us from the monstrous dog…and he did.

It was only as the light began to dim within the forest that I heard the sound of rustling leaves below me. And there at last stood my cousins and my brother, the last heroic deed of the day; to retrieve me from the trees

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Fishing in Poole Harbour – about 8 years old

Ben’s Dad, David

These words are from a CD that Ben and Sally gave me for Christmas.

Coincidently it happens to be one of my favourite groups so it was well chosen.

The CD is Shape Shifter by Santana and the words are written by Chief Yellow Lark of the Lakota tribe, one of seven Sioux tribes from Dakota.

………………………………………………………………………………………………………..

Oh Great Spirit, whose voice I hear in the winds

And whose breath gives life to all the world….hear me.

I am small and weak

I need your strength and wisdom

Let me walk in beauty and make my eyes ever behold the red and purple sunset.

Make my hands respect the things you have made and my ears sharp to hear your voice

Make me wise so that I may understand the things you have brought my people.

Let me learn the lessons you have hidden in every leaf and rock.

I seek strength, not to be greater than my brother, but to fight my greatest enemy,.. myself.

Make me always ready to come to you with clean hands and straight eyes.

So ….when life fades , as the fading sunset, my spirit may come to you without shame.

………………………………………………………………………………………………………..

When Ben’s life faded it was without shame for he fought a long fight against an unequal enemy. An enemy that held all the cards, but hopefully an enemy that one day will be conquered.

When Ben was a child he and I had the rare and extremely fortunate opportunity to share many hours and days together. Working from home as I did on the nursery, we made peat bale forts, dens, swimming pools, tree houses in the woods; he learnt to ride his first bike  and much, much more..

 At that time we had a menagerie of animals, ducks, goats, cows, rabbits and sheep.

However his favourite and constant companion was a golden retriever called Misty, They were usually to be found together as the greatest of pals and, by holding on to her hair, she even helped him master the art of walking.

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Ben and Misty – 5 years old(ish)

In those days we were living in a mobile home on the nursery. I well recall Ben’s night time regime which, before bed, involved him sitting in his favourite wooden legged armchair in front of the television ( black and white in those days). He insisted on having his favourite blue fluffy blanket positioned carefully on his lap (he was very, very particular even at that age) and his favourite programme on TV was Top of the Pops with Legs and Co…for those of you who are too young to know they were a group of young scantily clad female dancers who appeared on the Top of the Pops programme…he always called them ‘my gals’. Following this he would have a ‘bang’ (as he called it ) in his armchair which involved rocking it forwards and backwards. The sound of it could be heard even to the far end of the nursery, echoing on the raised wooden floor of the mobile home which raised many a question from visiting friends. This done he was ready for bed along with his bear and ‘fluff’, his woolly blanket, which again had to be placed correctly positioned on his bed. Picking bits of fluff off he would roll them in his fingers until he was read a story and dozed off.

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Ben with his ‘fluff’ (getting on for 2 yrs old)

Although the passing of Ben is the saddest event of my life I was cheered to find photos of our more enjoyable times together recalling when he first learnt to drive, riding his bike and lots, lots more.

We recently chatted and recollected about the many holidays we had shared in his younger days …these were good times together.

Ben and I had not always been as close to each other as we could have been during the preceding times due to distance and work. Several weeks before his first seizure Ben and I spent several days together in Saskia’s bedroom making a wooden shelf.

Following, in his words (which I will always cherish),  he wrote to me on email  ‘It was nice to spend time with you, and I feel we had some good chats, which was nice.

I feel like we were probably the closest we’ve been in a while, which is a good thing.’

Ben brought a lot of happiness into my life, I was his father and he was my son, forever he will remain, every hour of every day, in my memory.

Sally, you have carried an unenviably heavy burden over the recent months. You have my total admiration and thanks for your patience and understanding for looking after and caring for Ben. My words cannot convey sufficiently my gratitude for your dedication to his care, comfort and well being, thank you so much.

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Sailing in the Hebrides – 2006

 

Ben’s sister Katherine (READ BY NOEL)

My Brother

From the very first day I admired Ben and wanted to be like him, so I decided it would be a great idea to be born on his Birthday, although I don’t think he was too keen on this idea at first.

Ben was a great brother, always looking out for me and helping me when needed.

When we were young he would build lego castles for me, make race tracks around the lounge for my tricycle, we would go in the woods and play, and even sneak on to the golf course next door to steal the lost golf balls.

We had some great holidays together where he would always look after me. Unfortunately I wasn’t quite as good at that bit and found it funny when I saw Ben hanging off the edge of our canal boat in the water.  Apparently he was not pretending and had to be pulled back in.

Ben taught me to like his taste in music (or in other words, wouldn’t stop making fun of my music taste until I liked his!). I do now, however, see how the Spice Girls and Boyzone were not quite as good as I thought and thank him for this.

Ben would always help me with my computer, he built and designed my website which was admired and copied by other dog breeders!  He was always interested in what I was doing and would find time to help talk through possible questions and answers when I went for job interviews.

Whatever Ben did I wanted to do, whether it was wakeboarding, surfing trips (until I realised his idea of the best time to go was in the winter!), even down to leaving the salad on the plate or scrapping it out of a burger and putting cheese on everything.

I have always looked up to Ben and admired him. I couldn’t have asked for a better brother. He was always there to help me and talk to, even if he had other things to do.  I am so proud of his strength and determination and proud to have had him as my brother.

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Katherine’s first day at school (Katherine age 4 and Ben age 10)

 

Ben’s Mum, Delia

When I tried to write this (piece), I was overwhelmed by the impossibility of finding words that could in any way describe what I feel about Ben,  –  all that he meant and will always mean to me;  how, from the moment I saw his face on the day he was born, my life expanded and was suddenly so meaningful and worthwhile;   how he made being a mum such a joy;  how we came to understand each other so well and knew when either was happy, worried or sad;  and how, for all his life, he made me so proud.

Whilst trying to write I was watching the snow falling outside and remembered that it was snowing on the day Ben was born.  He was a beautiful baby and very contented, but, as the midwife recorded on his card using,( most unkindly I thought), the words “greedy baby”, he had a healthy appetite which didn’t change much over the years !

Ben grew into a happy, friendly little boy who loved books and being read stories. Thomas the Tank Engine was a great early favourite and later he went on to spend many happy hours playing with his Hornby train set, the track, with station, tunnel, all the engines etc., set out on a board covering a good proportion of our large living room floor.

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Checking the morning news – about 2 and a half

We lived in the countryside and Ben grew up surrounded by animals and nature and he never lost his appreciation for the natural world.

Earlier on, when we moved into the house we had built, Ben was only just 3 years old, but I remember  him being able to play, rewind and replay over and over again his audiotape recording of the story of Mr. Chatterbox on our stereo system.  Quite an impressive technical feat for one so young and a portent of things to come – that is, his love of gadgets and all things technical.  Even now in Kent, his cat Pickle can be located from quite a distance using a radio controlled collar.

As soon as he could talk, Ben was himself a Mr. Chatterbox, forever chattering to me, his Dad, and all the staff on the nursery.  At First School he was always talking in class and then apparently, to all the dinner ladies in the playground!  But as he grew older, Ben became a good listener and reserved his enthusiastic talking to explaining, in seemingly endless detail, the intricacies and details of mountain bikes, surfboards and latterly cameras and photography, all of which I tried to follow, but most of which went over my head.  However, I did promise to learn how to use the camera he helped me choose last year and I will keep my promise and hopefully take some photographs he would be proud of !

When I think of Ben, I see a young man who remained in many ways a fun loving child and yet who also had the wisdom and integrity of a man much older than his years.  The following first lines of a poem  by A A Milne always makes me think of Ben when he was young.  It is called “Disobedience”.

“James James

Morrison Morrison

Weatherby George Dupree,

Took great

Care of his Mother,

Though he was only three.”

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Ben and Mummy – age 3

I remember so fondly that many a time as a little boy,  he would get very serious and  talk to me about what could be done to make a situation better, an example being persuading me of the virtues of an artificial Christmas Tree one year  when I was upset because I couldn’t find a nice real one in time.  We still have the tree and it is forever “Ben’s Christmas Tree”.  This beautiful aspect of Ben remained with him all his life and he went on to indeed take great care of me, his sister Katherine and then Sally and Saskia.

As a mum it was a joy to see the relationship that developed between Ben and Katherine – they were so close and loved each other very much.  Right from the start Ben watched over her and she looked up to him.

When Ben first got the diagnosis that his disease could be terminal, the very first thing he worried about was how this would affect Sally, Katherine and myself.  So typical.

I am so happy that Ben went on to marry Sally and that they were so happy together. I’m so grateful that he got to know the wonder and joy of having and loving his baby Saskia.  Thank you Sally for making him so happy.  And I thank Ben for giving us you and Saskia to love now.

I loved Ben so much and am so proud of him –  for the way he lived his life and for the way he fought and lived with his “unwelcome visitor”.  I hope his inspirational  blog goes on to uplift , inform and support many others, as he would have wished.

And now I have to think of life without Ben and the thought is impossible because he will always be there.  He is in my heart and I will always talk of him. “ People never die if they live on the lips of the living.”  I would like to read two poems.

3 weeks old

3 weeks old

The Mention of His Name

The mention of my child’s name

May bring tears to my eyes

But it never fails to bring

Music to my ears.

If you are really my friend

Let me hear the beautiful music of his name.

It soothes my broken heart

And sings to my soul.

We Are Connected

We are connected, my child and I,

By an invisible cord not seen by the eye.

It’s not like the cord that connected till birth,

This cord can’t be seen by anyone on earth.

This cord does it’s work, right from the start,

It bonds us together, attached at the heart.

I know that it’s there though no one can see

The invisible cord, from my child to me.

The strength of this cord, it’s hard to describe,

It can’t be destroyed, it can’t be denied.

It’s stronger than any cord man could create,

It withstands the tests, can hold any weight.

And though you are gone, not here with me,

The cord is still there, but no one can see.

It pulls at my heart, I am bruised, I am sore,

But this cord is my lifeline, as never before.

I am thankful that God connected this way,

A Mother and child, death can’t take it away.

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Glastonbury Tor (1996)

 

 

Music: Stop crying your heart out by Oasis,

Chosen and sung by Ben’s cousin, Michaela

 

SCHOOL/UNI FRIENDS

 

Dave

 It was once said that the unconsidered life is not worth living. Ben’s life was worth living so much. And it was a considered life. Ben was one of the few blokes I know who spent time thinking about the right way to live, the right way to treat people. Ben was happy to spend an evening talking about love and life, hurt and happiness, how to live and live well.

Andy, Ben and I did our growing up together, we met as boys with squeaky voices and acne, Ben tended to outclass us on the football pitch in those days –  (though I would never have admitted that if he were alive), we went through the stages of Youth Club, Ice Trax, then in the sixth form Anna’s house parties, school shows and getting drunk til we threw up or pulled someone really embarrassing.

Ben was one of those guys who could be friends with everyone – even guys at school that the rest of us were scared of.

We went our separate ways to University but would always meet up in the holidays  and it would always be like we’d not been apart. We’d go out for drinks and catch up on how growing up was treating us. Those nights would tend to end with Ben trying convince us to go with him to some warehouse party that he read about on the internet.

For many years Ben and I would go down to Cornwall every summer, sometimes with a load of other mates, sometimes just the two of us. When I remember Ben I will always think of him in sitting in a campsite in Perranporth writing silly songs, talking about waves and women and life, the sun going down on another good day in a lifetime of good days.

We won’t get over losing Ben we will merely learn to live without him. We’ve lost one of the good ones. But in our sadness, we must celebrate his living – that we knew him and we loved him and we felt loved by him. In his living, and his dying Ben has shaped my life in many ways and I, like all of you, will miss him terribly.

I want to read the chorus of a song Ben wrote– possibly the only song Ben ever wrote – which was pretty famous for a while around the campfires of South Wales. He wrote the words and I wrote the music. Rather than singing, he kinda narrated it…

“I am camping with Dave

Camping with Dave I am,

We’ve got a tent with some beer outside

And in the car there’s some ham.”

Wherever you are now Ben,  I hope you’re watching the sunset over the sea and raising a beer to a life well lived.

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Spain – 2005

Dan

On this sad day I thought it best to remember Ben by focusing on the good times, because my overarching memory is that all the times I spent with him were good times.

My relationship with Ben was unique in that we spent more of our time together on two wheels rather than on foot. We spent endless hours outside of school cycling around the streets of Corfe Mullen biking over heaths, causing mischief, hanging around street corners (along with Simon). I have thousands of great anecdotes from those times all of which were focussed around the primary, and very unlikely aim, of searching for girls.

Ben and I were both new to Corfe Mullen in 93, and soon bonded over a shared passion for quality music, extreme sports and a sense that everyone else in Corfe Hills was a bit weirder than where we had come
from.  At school, Ben was universally liked and was friends with everyone, no matter what their social group, except for a few teachers who he wasn’t afraid to talk back too. But to his best friends he was unequivocally caring  – a good example is when my wife, whom he had known for some time, and I got together, he took her to one side and told her not to mess me around – advice I’m glad she took.

I’m really touched to be asked to speak today and recount this part of his life, which is testament to how much Ben cared for, and remembered his friends. As we grew up Ben and my lives lead in different directions, but we never lost touch and more importantly our friendship never changed as a student or so-called grown-up. When we met, it was still on bikes or skateboards and just as fun although the girl searching was less necessary.

I’m so glad Ben found the perfect family and had such a beautiful baby. Ben was an incredibly warm, generous and caring friend to all of us and I will treasure his friendship forever.

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Wakeboarding in Greece – October 2007

Andy

I was very lucky to have known Ben for over half my life and like everyone here I am absolutely devastated by his death. He was the best friend anyone could have hoped for.

Ben was a genuinely unique person. He was a great listener and incredibly patient and generous. He was the king of the deep and meaningful conversation and would always be someone I could turn to when I needed some support.

Reading my last few texts from Ben, the first thing he said (after the customary introductory insult) was to ask how I was and to ask what was going on in my life. You always knew that Ben genuinely cared about his friends and family.

I remember part of Sally’s wedding speech, and forgive me if I get this a little bit wrong, where she said that no matter what time of the day or night it was she could tell Ben some plan or idea she had and rather than dismiss it as a pipe dream he would be supportive and try and make it happen.

This was the same in our friendship. He always had faith in me and made me believe I could do something.

As well as a being an incredible friend it would be a disservice to Ben not to mention his sense of humour. It was a testament to Ben that not only was his blog a brave thing to write when battling cancer but was also genuinely entertaining and, at times, could be laugh out loud funny.  It isn’t the most philosophical thing he ever said but, when I was looking back through his old facebook posts, the following some how summed up Ben’s humour:

‘Ben thinks Downton Abbey would be significantly improved by the inclusion of dinosaurs. Even just one velociraptor would liven things up considerably.’

He was the best friend anyone could have hoped for and I will miss him terribly. Love you Ben! x

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Extreme(ly muddy) – Andy and Ben – Oct 2009

 

Tom

I lived with Ben for four years while at university. When I look and think of Ben during this time my memories can be split into two sections. The adventures we shared and the person that Ben was.

The adventures varied from taking trips to north Devon, going to the pub, sleeping in the car, then getting up in the morning slightly hungover and surfing in the hail in January. The many drinking sessions and parties at university. Seeing what he ate was always an adventure too, he would bimble his way around the kitchen, preparing such delicacies as Fray Bentos pies and Campbells meatballs with spaghetti. I remember one time watching the spaghetti and meatballs making a repeat appearance and it didn’t look any different.

My other thoughts of Ben are more a reflection of his personality. His anal retentiveness for the position of items in his room. If I was back before him I would sneak into his room, turn a CD upside down or move an ornament or book then wait when he came back to see how long it would take for him to notice.

Ben was always very enthusiastic about things, surfing, listening to music, but also a very laid back and patient personality. It was this laid back personality that allowed Ben to somehow be able to befriend people without even trying. These are all things that I’m sure I’m repeating things that others have said.

Ben loved to talk and was always a great fan of the late night heart to heart.  He would always do most of the talking and was always very trusting.

The main thing I think of with Ben is the ability of being able to slip back into conversation with him after not seeing him for 18 months as if it was yesterday we last talked, and him being one of my only true friends.

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All grown up (Dave, Andy, Ben, James and Tom)

Paul (READ BY TOM)

I remember the exact moment when I first met Ben. It was raining and I was arriving at Uni with my mom. Some guy was moving boxes into the halls where I would be staying and so I said hello. I received what can only be described as a very awkward and a somewhat underwhelming response. ‘God’, I thought to myself, ‘I’ll be staying away from him!’

Little did I know however that I had just met my best friend at university and a person with whom I would form a lifelong bond and friendship.

Tragically Ben’s life has been cut far too short but I like so many others, am heartened by the wonderful memories of time spent with him. Ben was frustratingly obliging and would forever say ‘yes’ to anything that might be suggested, which drove me mad! He always credited me with teaching him that an insult can in fact be construed as a term of affection. Once he learnt this piece of wisdom Ben began an endless campaign of insulting me which I loved and reciprocated with pleasure.

Ben, I feel very blessed to have known you and I will forever treasure the times we spent together. I loved how you always got so emotional when you were drunk. You really wore your heart on your sleeve and sometimes your Burger King too! You were kind, caring, considerate, and sincere and I too learned a great deal from you. Thank you.

Your friend, Paul

Paul insulting Ben (probably)

Paul insulting Ben (probably)

 

Music : The Zephyr Song by The Red Hot Chilli Peppers

The Chilli Peppers were one of Ben’s favourite bands when he was in his late teens/early twenties. He has written a book for Saskia about his life – in it he lists ‘By The Way’, the album that this song comes from, as one the most important to him.

 

 

WORK FRIENDS

Twelve of Ben’s colleagues are here from Kent and Ben’s boss Emma is going to speak on their behalf, combining their thoughts and memories into one reflection.

Emma

Ben was much more than a work colleague, he was a friend to many and part of the Coty family.

He joined Coty in 2008.  From the minute we interviewed him, we knew we wanted him as part of our team, and that decision proved right throughout his time at Coty, as he progressed quickly through a variety of roles.

Ben was a pleasure to manage and to work with.  His work was of an incredibly high standard and every piece of work assigned to him would be completed with care and attention to detail.  He had a real desire to learn and develop and passed his first accountancy exams with flying colours.   He was an expert in excel, always trying to improve things and woe betide anyone who fiddled with his spread sheets!  The care and application he showed in performing his work responsibilities were clearly a demonstration of his desire to provide properly for his family.    Accountants are normally blessed with numerical skills, but struggle with the written word.  What none of us realised was Ben’s prowess with language, through the way he thoughtfully and bravely shared his journey with all of us via the blog.  Sadly we never got to utilise that talent.

He was nicknamed “Superhero Ben” by the A/P team as apparently his name sounded cool like a super hero and he knew the answers to most of their questions.  He never made comment to this but would sit at his desk and quietly smile, with us not being sure whether it was a ‘oh yes that’s me smile’ or an ‘omg (oh my god) they are so annoying smile’.  Ben would master mind many office pranks, appearing completely innocent, successfully disowning himself of any involvement.  He once purchased what felt like the entire stock of Tesco’s tin foil to wrap a colleague’s desk, chair and even individual drawer contents such as paperclips in foil.  The prank did not end there and even involved setting a stapler in jelly.  But not forgetting his gentler side, and at a team building event he patiently supported a fellow team member who was petrified of abseiling down a rock face.

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Foiled!

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Helping out a colleague

As a team there were many enjoyable non work events.  In 2009 Ben, along with others from the team, completed the London to Brighton bike ride raising money for the British Heart Foundation.  A lot of practice sessions were held on the country lanes in Ashford to be best prepared for cycling 54 miles, and I understand an important element of those sessions was always to rehydrate at the nearest pub.  On that note, one night out Ben refused to go home with everyone else wanting to carry on partying, only to go to the next bar to opt for a glass of water and then a very expensive taxi journey home.

With the birth of Saskia we discovered a new Ben.  On his desk a photo of Saskia swimming under water took pride of place and when he spoke about her his face would light up and it was clear that he had a special place in his heart for her from day one.  His dedication to his family was so strong that he was to be the first person at Coty to take advantage of the new extended paternity leave.

Words that come to mind to describe Ben at work were kind, gentle, thoughtful, honest, respected, knowledgeable, determined and successful with a wicked sense of humour.

Ben, thank you, you were a much valued colleague and friend, providing lots of happy memories.  We are privileged to have had the opportunity to work alongside you.  Courageous, inspirational and very sadly missed by all of us at Coty.

 

Movember 2011

Coty accounts ‘Movember’ 2011 – Undoutedly the finest moustache of the group

Music: My Beloved Monster by Eels

This song was played at Ben and Sally’s wedding. Eels were another favourite of Ben’s. He has asked Sally to give Saskia the album this song is from as a gift from him on her wedding day.

SALLY’S PARENTS

Written by her Mum, Christine, Read by Dad Ivan

Compared to many of you here today, Chris and I have known Ben for a short time. We first met him for lunch with Sally and other members of our family at a cosy pub in the New Forest. He was clearly a very pleasant young man, but the noise and chatter of a busy place wasn’t the best way to get to know Ben.

Wimborne Folk Festival 2005

Wimborne Folk Festival 2005

Sometimes it’s said that actions speak louder than words and that was how gradually we learned of his integrity, his modesty, his thoughtfulness and his care for others. He didn’t seek the limelight or fleeting popularity. He was true to himself and quietly did what he believed to be right.

In family heart to hearts about romance, boyfriends and marriage, I had always said to Sally, “Don’t settle for anything less than the best.”

Children don’t always take their parents advice, but on this occasion she did.

Ben was the finest of young men and we were so happy when he asked Sally to marry him.

Their wedding was on 13th September 2008 and it had been a long very wet summer. But the sun came out for Ben and Sally and it was a wonderful day of sausages, sunflowers, smiles and lots of sunshine.

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Our wedding – September 2008

After a little while, two became three when Saskia arrived.  Family life brought Ben and Sally real joy. And Ben adored his little girl.

One day last summer, while playing with her Daddy, Saskia had a fit of the giggles. Ben described it as “the best sound in the world”. She truly has been a blessing to them both, especially when hard times came. Ben saw her crawling , feeding herself,  taking her first steps and saying Daddy. Every day bringing more sunshine into family life during such difficult times.

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Six months old Saskia having a bath

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Saskia and Daddy – March 2012

But now she will be a blessing in a new way. Ben is no longer with us, but Saskia is a part of him that will stay with us into the future. As she grows we will notice a look, a mannerism, a habit, an aspect of her character to which we will respond – “She is just like her Dad.”

Ben always chose to be positive about the future.  So what a lovely prospect there is ahead of us as we see her grow.

 

Music: At My Most Beautiful by R.E.M.

Also played at Ben and Sally’s wedding and another favourite band of Ben’s. Sally will give this to Saskia on her wedding day as well.

 

SALLY

I want to talk at first about the man that Ben became during his last few years, and especially this last year when the battle with cancer truly began. Ben’s approach to his illness was described beautifully on the blog by a Macmillan nurse, Karen, who has supported us since the beginning, five years ago. She said…

“Having known Ben since his diagnosis I can honestly say that in 35 years of oncology nursing I have never met anyone who lived with his disease with such dignity and humour. He was always concerned for everyone else, and was an inspiration to all who are living with a diagnosis of cancer.”

 She was absolutely right to say that Ben was always concerned for everyone else. I don’t think Ben worried very much about dying for his own sake – but he did worry about the people he would leave behind. He was sad that he wouldn’t be there to fix things for us, to talk through our problems, to make sure we were ok. He just cared about us.

People often talk about the role of the carer in terms of burden. With Ben it was no burden – he made it easy. In fact it was a joy to take of care of him – we spent more time together, we laughed a lot, we didn’t bicker over stupid things – it brought us closer than we had ever been. Sometimes of course he was frustrated or fed up and I was on the receiving end – but he was always quick to apologise and tell me how much he loved me for everything I did for him. He was never a burden.

How true also that Ben showed dignity in the face of the disease. He felt anger that the disease had taken over his life, but that anger never got the better of him. He used the passion he felt as a positive force – it motivated him to use the blog as a way of educating people about living with cancer. In particular he hoped some good could come out of his situation if he could make people understand the risks and dreadful potential consequences of getting skin cancer.

Much of Ben’s  dignity comes out in his humour. Ben mixed the horror of his situation with humour in a way that was so poignant – he did it to make it easier for us I think. Like in a post in April when he said…

I’m not really sure how to put it, so I’ll just say it – the cancer has spread to my brain (boo hiss!).

 

In the chemo chair - April 2012

In the chemo chair – April 2012

Another one of these comic asides just says it all…

I don’t want cancer (wish I could find the receipt).

 

Karen also said he was an inspiration. There can be no doubt of this – the word runs throughout the blog comments and appears over and over again in the cards and letters I have received since he died. I think it was his positive mind set above all that inspired – and I sincerely believe that without it Ben may have died quite a few months ago. More than one doctor told us how surprised they were at how long he had managed to keep going. He was determined to fight as hard as he could to stay with us for as long as possible – and that positivity and fighting spirit meant that he was still around to hear Saskia call him Daddy. I truly hope that Ben’s blog will continue to inspire, entertain and educate its readers for a long long time.

And what did Ben mean to me? Well, everything. He still is everything. How can I begin to explain that? He was the one I’d been looking for, the one I was meant to be with – he was just the one. I never fit together so effortlessly and naturally with anyone as I did with Ben. At our wedding I said I’d found the person I could just ‘be’ with – being ourselves, in many ways opposite, we were a perfect match for each other. That match was so perfect that together we made that amazing little person, Saskia. Ben was a wonderful husband and Daddy – he was honest, open, caring, funny, wise, loyal and strong. Saskia and I will never forget him – his name will always be on our lips, his loving smile always in our minds, and his love for us, and ours for him, will always be at the heart of our home.

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Whitstable Beach – May 2012

Finally, an introduction to the next piece of music.

Ben and I both loved music, but in different ways – where I liked to dance and sing and do the washing up to music, Ben liked to be still, focus his mind and really listen. He liked music with depth, with layers and strong emotion. A few years ago Ben discovered an American band called Tool – he became passionate about them, and during the last few months I would say he listened to little else.

The music that we are soon to hear is Ben’s only request for today. As I wrote on the blog, today came much sooner than Ben and I imagined and we hadn’t had time to talk much about what he wanted. But this he was emphatic about – we all had to listen to this song and remember him (and I expect he hoped you’d all become avid Tool fans in his honour too!).

The song is called ‘Wings for Marie’ and the singer wrote it about the death of his mother – though Ben wanted us to focus on the music rather than the words, some words do resonate – ‘passionate spirit…it’s time for us to let you go’.

Ben and I listened to the album that this song comes from on the evening before he died – it was the last music he listened to.

Good night and good bye my love.

 

Music: Wings for Marie by Tool

 

Pause for reflection led by Noel

Please join me in a few moments of respectful silence to remember Ben in your own way, perhaps sitting quietly, or say your own prayer, or just hold the hand of the person next to you.

Music: Circles by Miguel Mera

Music composed by Sally’s friend Miguel for Ben and Sally’s wedding

Closing words by Noel

We will be leaving this building shortly and making our way to the graveside where we can say goodbye to Ben.

First I thank you all for coming here today; we have shared a little time remembering the life that Ben lived and his kind support of other people.

We have a final of music and then we will allow Ben to leave to be placed into the hearse outside and we can accompany him to his resting place.

Final Piece of Music

Again it is the wedding song ‘Dawn’ by Carlos Nunez

A piper to lead the hearse to the graveside. Noel to lead family and friends.

At the graveside.

The family have chosen this natural site for Ben because, unlike a cemetery which often feels like a place of endings, this is place that is forever renewing itself and growing more beautiful. Each January the trees will be taller, the branches thicker, more wildlife will make its home here. What a perfect place for Ben to be.

Graveside reading one: The Dash by Linda Ellis

I read of a man who stood to speak
At the funeral of a friend.
He referred to the dates on the tombstone
From the beginning to the end.

He noted that first came the date of his birth
And spoke of the following date with tears,
But he said what mattered most of all
Was the dash between those years.

For that dash represents all the time
That he spent alive on earth
And now only those who loved him
Know what that little line is worth.

Graveside reading two: He Is Gone by David Harkins

You can shed tears that he is gone
Or you can smile because he has lived

You can close your eyes and pray that he will come back
Or you can open your eyes and see all that he has left

Your heart can be empty because you can’t see him
Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday

You can remember his and only that he is gone
Or you can cherish his memory and let it live on

You can cry and close your mind, be empty and turn your back
Or you can do what he would want: smile, open your eyes, love and go on.

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The field where Ben is buried. A tree will be planted on his grave later in the year.

BENJAMIN DAVID EDGE 16 February 1981 – 3rd January 2013

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Fundraising news and links

Click here to sponsor Tanya Justice (24 hour spin in aid of Pilgrims Hospices) – Tanya (a school friend of Ben’s) and her friend cycled for 24 hours straight last week and covered the distance from their gym in Bournemouth to Pilgrims Hospice in Canterbury, and back again – twice! So far they’ve raised over £1000.

Click here to sponsor David Austin (4 Challenges in 1 Year) in aid of Pilgrims Hospices – My brother David has completed his first challenge and plans to do three triathlons during the summer – so far he’s raised £650 for Pilgrims.

Click here to sponsor David Austin (4 Challenges in 1 Year) in aid of Cancer Research UK – David is dividing his fundraising between Ben’s two chosen charities – so far he’s also raised £840 for Cancer Research UK.

Well done Tanya and Dave! xx

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Last days

This post has been on my mind for days, clamouring to be written so that I cannot rest until it’s done. So here we go…(it’s long, I’m sorry)…

I feel very mindful of the fact that Ben’s death must have come as a terrible shock to most people, coming so suddenly and so soon after he’d been cheerfully joking about walking sticks and radiotherapy side effects in his last post, and so I want to explain a bit more about what happened during the three and a half weeks between then and the 3rd of January.

Looking back I feel like there were three stages really – leading up to Christmas at home, Christmas week in Canterbury Hospital, and the weekend/New Year in Pilgrims Hospice – so that’s how I’ll tell it.

The weeks before Christmas

The radiotherapy all went very smoothly, though all the going to and from hospital every day had taken its toll and Ben was desperate for the four days off from travelling before the next planned trip to London. His mobility was getting worse all the time and getting up the stairs was becoming a major mission, as was getting up off our bed, and increasingly I was having to help lift or steady him. It was really frustrating and upsetting for Ben, and for me too, being so helpless – only able to offer solutions that Ben hated the idea of (moving our bedroom downstairs, getting a hospital bed for him etc).

It was so much for him to adjust to, and the goal posts just kept shifting and shifting as his mobility got worse. I suggested he write a post about the emotional struggle he was going through and he started writing the post below…

Will the real Ben please stand up?

Ermm… no he can’t, he’s stuck on the toilet and can’t get up.

True story… not one of my favourite stories about myself, but I thought I’d share nonetheless.

Yep that’s right folks, my fatigue and muscle weakness seem to have passed some kind of critical tipping point, whereby I am to all intents and purposes… now useless.

As I have mentioned in previous posts, we knew we were heading along this path with the radiotherapy, but the rate of decline over the last couple of weeks has really taken us by surprise. This has been the toughest and most demoralising period we have faced so far. So I decided to write a little about what we are struggling against, and how it is affecting us emotionally.

Normally I do the emotional stuff after the fact (because during the hard times I feel less inclined to write the blog). But this time I’m going to write in ‘live emotion’ – for two reasons;

1 – it’s how I’m feeling right now, so why write any differently;

2 – I want people to understand all aspects of fighting cancer – both the good and bad times (note to self – need more good times).

I don’t know how Ben managed to be so relentlessly hilarious about the most awful situations, but he did – and that’s how he kept himself (and the rest of us) going I guess. I wish he’d got round to writing the rest of this – I think it would have been an amazing post. He wrote it sometime during the week leading up to Christmas – the week following the radiotherapy. On the Monday an OT had visited and in an hour got Ben to agree to having a whole host of aids sent to the house (a commode, bars for the bed, a bath lift…) and rails fitted along our terrifyingly steep stairs. Though he agreed, he felt really down about it – having changes made to your house feels permanent doesn’t it, and that’s just what he was afraid of – that he would be significantly disabled for the rest of his life.

Twice that week we had to travel up to London – for a clinic and vaccine appointment on the Wednesday, and chemo on Friday. It was really stressful – on several occasions on the Wednesday Ben’s legs nearly gave way and I had to quickly find a chair for him, or try and hold him up in the middle of the street. On Friday we used a wheel chair we’d borrowed, but still getting into and out of the car was really hard. He was so so determined to get that treatment if there was a chance it could help him hold onto life for a bit longer.

Ben was exhausted by the weekend and had decided he wasn’t going to leave the bedroom until Monday morning when we were planning on travelling to Wiltshire to spend the Christmas week at his Mum’s (we’d hoped to camp out there, be looked after, and let people come to us).

While I spent the weekend preparing for our trip, Ben spent the weekend resting and dozing. By Sunday evening the packing was done and we were ready to leave the next day. Unfortunately that’s not what happened. Ben can tell you the next part…

I’m actually writing this from Canterbury Hospital, where I have spent the last few days… yes, including Christmas Eve, Christmas Day and Boxing Day.

Why is that then?

Well, on Sunday night I experienced one of my worst fears about this disease – I had a seizure. Sally discovered me convulsing on the bed and immediately called an ambulance.

I don’t really have much memory of this, but I do remember an intense form of confusion. I kept forgetting things people said to me, my speech wouldn’t work at all – I couldn’t get my words out, and if I did they were the wrong words or at least in the wrong order.

When I came round I was sat on the bed with an oxygen mask on, with Sally and two paramedics. Unfortunately due to our steep narrow stairs, they weren’t comfortable getting me down to the ambulance, so we waited while they ordered some kind of ‘Special Forces’ paramedics who specialise in awkward rescues.

Once they arrived, and after much discussion I was literally tied up in a wheelchair and carried down the stairs to the waiting ambulance, and then off to Canterbury Hospital, which is where I have been since.

Upon arriving at the hospital I had stabilised a lot, but there was still a lot of confusion in my head, I was really struggling to answer the paramedics questions – which was quite frustrating.

The doctors also decided they needed blood tests from me. Now, these eight cycles of chemo have screwed up my veins, and getting blood out of me or getting a cannula into has become almost impossible. An hour or so later, and a number of staff had tried and failed, so we decided to give it a rest – they even tried my groin several times, which wasn’t much fun.

Christmas week at Canterbury Hospital 

So as Ben says in this untitled draft (which he wrote  on Boxing Day night, I think), we spent the Christmas week, from the early hours of Christmas Eve until Friday 28th, at Canterbury Hospital.

Christmas Eve was intense  – a whirlwind of consultants, junior doctors, palliative care specialists, nurses and physios buzzed in and out of the room all day. Ben’s family (and Saskia) who had all been in Wiltshire expecting us to join them had hastily shoved the presents, the mince pies and a few clothes into their cars and raced over to Kent to be with us. Luckily there was a day room on the ward where a few of us could always relax while others visited Ben so we didn’t have to have the whole clan crowded into Ben’s room at once (another plus – Ben had his own room, complete with en-suite bathroom).

In terms of seizures and their after effects on Ben’s speech, he slowly improved throughout the day. He had had another small one in the morning, and during the morning he was still unable to speak properly. To our huge relief however, he slowly regained his ability during the afternoon, and though slow and a bit muddled sometimes, he could hold a conversation.

The other medical issue was a large quantity of fluid that had collected in Ben’s abdomen, making it hugely swollen and tight like a drum. With the Christmas holiday looming, the doctors wanted Ben to be as sorted as possible before it became only a skeleton staff, so that afternoon they put in a drain and took out several litres (to Ben’s relief it was nothing like as painful as the lung drain he’d had a few weeks before).

Christmas Eve night, and the rest of the nights while Ben was there, I slept in a recliner armchair in his room. As everyone does in hospital (and as any of us would after something as scary as a seizure) Ben felt vulnerable and didn’t want to be alone over night. Now I look back I’m so glad I could be with him all that time – we had a few good midnight chats – the last ones we would have it turned out.

Christmas Day and Boxing Day were blissfully doctor-free (no offence to them – they were great – but no one wants to see the doctor on Christmas Day) and we were able to cobble together our own festivities in the day room, putting our presents under the Christmas tree, noshing on sherry and mince pies, and the very decent hospital roast dinner and trimmings. Ben was too sleepy to join us in the day room on Christmas Day itself, but did enjoy several hours on Boxing Day opening his presents and watching Saskia play with her new toys. Here are a few pics…

Having a Daddy cuddle

Having a Daddy cuddle

Comparing our Saskia original art works

Comparing presents (wish Ben was here to think of witty captions…)

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Saskia (bit cross), Daddy, Nana and Aunty Kat

Thursday arrived and so did the doctors and decision-makers – Ben hadn’t had any more seizures and was considered stable enough to leave the hospital. Over the previous few days Ben and I had discussed what to do next and he had come to terms with the fact that his mobility was so compromised that he couldn’t go back to living in our top floor bedroom, and that we would have to move downstairs and have a hospital bed put in. This would all take a while to set up so we decided that in  the meantime he would go to Pilgrims Hospice for a week or so to get some respite, work with the physios on his walking and movement in general and give us the time to organise the house for him to come home. So on Friday we moved to the hospice and settled Ben into a lovely room of his own, with a large patio window looking out onto the gardens.

At that point we had NO IDEA that Ben had so little time left. As crazy as it seems now, we all thought there would be at least a couple of months more, and we were still talking of getting to see the Professor at St George’s a few weeks later. When I say ‘we thought’ I don’t include the medical staff – I dare say they suspected that there was very little time left – but we’d decided not to ask the ‘how long’ question right back at the start and that, plus our code of staying positive, kept us optimistic (albeit maybe blindly by this stage). We knew that we were going to have to ask the question soon, and that the treatment was looking increasingly less viable, but still we thought there were weeks ahead of us at least in which to make those choices.

The weekend and New Year at Pilgrims Hospice

The weekend began well, with a visit from some of Ben’s aunties and his uncle, bringing more gifts and lots of smiles and hugs. Although he was very sleepy and drifted off from time to time he loved seeing them, and playing with all his new toys (yes most of his presents were toys – he always was half ten year old, half grumpy old man, I thought).

Ben and Aunty Maria

Ben and Aunty Maria

The sleepiness of that afternoon soon became the norm. Increasingly Ben was asleep more than he was awake. He would start sentences and then fall back to sleep in the middle of them. We hoped at first that this was just drug side effects, but sadly, as it was later explained to us, this was part of the dying process.

Over the days the nurses and I witnessed a number of what we thought were mini-seizures and that I think was his brain giving into the cancer at last. The blessing was that Ben wasn’t in a great deal of pain. He did find it painful when the nurses had to move him around on the bed, but with strong painkillers this was minimised, and they avoided bothering him as much as they could.

There had been another cluster of ‘skeleton staff’ days with the weekend and New Year, and Wednesday saw the return to work of some of the key people responsible for Ben’s care. That afternoon Ben’s mum and I were asked to meet with some of the doctors to talk about Ben’s condition. Finally we knew we had to ask the ‘how long’ question. The consultant said, ‘Well, given how quickly Ben has deteriorated in this short while….’ I finished her sentence, ‘It could be just a few days’. She nodded, and maybe in her mind she was thinking ‘or just a few hours’, but she didn’t say so.

We quickly made calls to family and friends – ‘Please come soon’. That night Ben’s mum and sister joined Ben and I at the hospice – we ate chocolate and watched David Attenborough  talking about giraffes on the telly. Ben wasn’t conscious most of the time but I’m sure he could feel us all with him by his side.

That night I went to bed in my usual camp bed that the nurses had given me at 11 or so. In the night I woke to Ben coughing. It took a while to pass and during that time I sat up with him, occasionally talking to him a bit – I’m so glad I did. Around 3am he was peaceful so I went back to bed and fell fast asleep. I was woken at 7am by the nurse – Ben had gone.

After…

I’m not going to say much more – this is very long already. I hope this is helpful, to know what Ben’s last days were like. They were difficult and sometimes frightening, but they were not painful (not very much so), and he had lots of lovely moments with his family around him, he celebrated Christmas with his little girl, and at the end he went peacefully.

There’s so much more I could say – about how I feel, and what a thoroughly wonderful husband Ben was. But there’s time for that, and the funeral will give us all the opportunity to share our feelings and stories.

One final word…I would like to thank all the staff in the Brabourne Ward at Canterbury Hospital and also at Pilgrims Hospice. They were so kind and thoughtful towards all of us and I will always be grateful to them for how they carried us through these difficult days. Thank you.

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More info about the funeral

Here’s another short post with just a few extra details regarding the funeral…

Dress – There is no need to wear black, unless of course that’s what you’d prefer to wear, or just happens to be the colour of your outfit.

Flowers/Donations – The family will be providing the flowers. If you would like to remember Ben by making a donation to one of his chosen charities, Cancer Research UK or Pilgrims Hospices, there will be collection envelopes available at the ceremony.

Other fundraising – My brother David is also busy fundraising for these two charities by taking part in several triathlons and the Tough Guy contest. If you would like to support him you can visit either of his Just Giving web pages (for Cancer Research – www.justgiving.com/David-Austin4, or for Pilgrims Hospices – www.justgiving.com/David-Austin5).

The Wake – After the ceremony we will be going across the road to a lovely pub called The Horns which is opening up all its rooms especially for us.  There will be some refreshments provided including tea and coffee, plus the bar will be open throughout the afternoon. Food will be available to buy from 6pm if anyone would like to stay around a little longer.

Parking – Parking is extremely tight at the burial site so we recommend that you park at The Horns pub.

Accommodation and Transport – Several of our friends in the Wimborne area have kindly offered their spare rooms in case there is anyone who is stuck for somewhere to stay. If you are interested (or have a room to offer) please contact me. Likewise I am sure we can help people who are travelling to Poole Station and will be in need of a lift. If you are able to offer a lift, or are in need of one, please let me know.

I am really looking forward to seeing you all and sharing memories of Ben together.

Sally

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Ben’s funeral

This is just a short post to let you know the details for Ben’s funeral, which are…

Friday 25th January

1.30pm

Woodland Burial Ground, Greenhill Road, Colehill, Wimborne, Dorset, BH21 2RG

There will be a ceremony, the burial and then some light refreshments. Anyone who would like to join us in our celebration of Ben’s life is very welcome – we would love to see you there.

We are going to have a picture gallery of Ben’s life –  if you have a picture of Ben that you’d like share, please bring it along (you can take it home with you afterwards).

To help us plan the refreshments if would be great if you could let us know if you’re intending to come.

Hope to see you there!

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