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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.



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:


Our family chain is broken,

And nothing seems the same,

But as God takes us one by one,

The chain will link again.


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


Think of Ben as living

In the hearts of those he touched,

For nothing loved is ever lost

And Ben was loved so much.


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


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.


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


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.


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.


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.


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.


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.


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.”


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.


Glastonbury Tor (1996)



Music: Stop crying your heart out by Oasis,

Chosen and sung by Ben’s cousin, Michaela





 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.


Spain – 2005


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.


Wakeboarding in Greece – October 2007


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


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



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.

Ben&Sally (1214)

All grown up (Dave, Andy, Ben, James and 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.




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.


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.




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.


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.

Ben&Sally (1119)

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.


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.



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.


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


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


Filed under Battle with Melanoma

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…)


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.


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.


Filed under Battle with Melanoma

Early morning ramblings…

It’s 4.a.m., and I can’t sleep. All is completely silent, with the exception of the occasional ‘sleep-whimper’ from Saskia’s room. Poor little thing currently has probable conjunctivitis in both eyes, and a chest infection to boot. She has some antibiotics which will hopefully sort her out.

Being awake in the early hours is fairly common for me these days. So this time I have decided to do something productive with this time and write an update for the blog.

This last week has been another busy one, with three trips to London (vaccine, clinic appointment, chemo). So I’m looking forward to a rest day tomorrow (well, technically today I guess).

All the appointments went pretty much as planned. It looks like I am to have another course of brain radiotherapy, hopefully in the next couple of weeks. And apparently the vaccine should be starting to kick in about now (usually after the third dose).

So there’s plenty going on in terms of treatments – it feels like we are throwing everything at it. Next, the kitchen sink.

I am pleased about that though. In cancer treatment there is this trade off between the benefits of a treatment and the impact of it’s side effects on the patient’s ‘quality of life’.

This is a choice that I strongly believe should lie largely in the hands of the patient. This is why I am disappointed in the Royal Marsden – they effectively made that decision for me, telling me to go home for ‘symptom management’, based on their rigid ‘flow chart’ style of treatment options (which for some reason also excluded some perfectly orthodox treatments from which I am now benefiting).

I wasn’t ready for ‘symptom management’. I’m young(ish), and otherwise relatively healthy(ish), and seem to tolerate the treatments fairly well. And most importantly I have an awesome little girl, fantastic wife, and an amazing family to fight for.

So I am grateful to my new consultant for giving me the opportunity to be able to continue to fight this disease. I won’t lie, it is hard, and who knows, one day I might tire of all the treatments and side effects, but I’m not there yet – there’s still the kitchen sink in reserve.

In myself I am feeling ok at the moment. I have little in the way of pain these days, that seems very well controlled.

The draining of nearly five litres of fluid from my right lung seems to have had massive benefit. I can still get out of puff, but nowhere near to the same extent as beforehand, and recovery time to a normal breathing rate is much improved.

I would say fatigue and weak legs are my biggest problems. Fatigue is hardly a surprise after six cycles of chemo, and the muscle wastage in the legs we know is the steroids. I’m ok walking on the flat, but stairs are a real killer. I sometimes find myself crawling up them now, like Saskia – except she’s faster than me.

Due to these issues I don’t get out much these days. I would imagine for most people my current ‘quality of life’ would appear pretty rubbish (and in some ways it is). But I have found that by readjusting my expectations of what ‘quality of life’ actually means / involves, then it is possible to enjoy my days, and even take opportunities that would otherwise not be there.

For example, listening to music – I used to always be listening to music when I was younger. As adult life, work, etc, encroached then I found less and less time for it. But now I can lie on the bed with the iPod and rediscover my (fairly vast) music collection.

So it’s ups and downs where ‘quality of life’ is concerned. The trick is to focus on the positive (not always easy).

Right I think I will leave it there and see if I can’t get back to sleep. I’ll post this later though, I don’t want to get lots of angry people shouting at me for making their phones go off at stupid o’clock in the morning.


Filed under Battle with Melanoma

Not About Saskia

I know I promised you a post about Saskia, but I’m afraid I haven’t got round to that yet. The next one will definitely be about her (probably).

Part of the reason I haven’t got round to writing about her is that last week was chemotherapy week, so we had two trips to London – Wednesday for pre-chemo assessment clinic, and Friday to receive the actual treatment.

Both trips went well. The doctors in clinic were pleased with my progress over the last couple of months, and are hoping this represents what they call a ‘clinical response’ to the chemotherapy. In a couple of weeks I will have a CT scan to determine whether or not this is the case.

Personally I am not getting my hopes up too much, primarily because I have had them dashed too many times before. I was actually reluctant to write this on the blog, in case I was tempting fate – but I figure you’re all on this rollercoaster with me now.

It would be fantastic if it were the chemotherapy eliciting a positive response, but I am also aware that there are other things going on. I have had radiotherapy on certain areas, and a new improved ‘pain management’ regime (painkillers basically).

So it’s difficult to know what’s doing what – but fingers crossed for the chemo!

I was wondering whether I would actually get the treatment, as I have been suffering from light headedness when I stand up after long periods sitting – most likely due to the chemo killing all my red blood cells. Chemo doesn’t determine good from bad cells. It just kills all fast growing cells – cancer cells (we hope) and good cells alike. But my blood test results on Wednesday must have been ok, as I got another big dose of chemo on Friday.

The actual delivery of the treatment went well – aside from dealing with a nurse who was infinitely more interested in repeatedly informing us about her social life than paying full attention to my treatment.

“After you’re done I’m off down the Slug and Lettuce in Wimbledon for a few gins”

“I see, can you concentrate on what you’re doing please, this treatment is kind of important to me”

“Tell you what, I’ll do a manual flush so you don’t have to wait around”

“Ermm… are you sure you are doing this for my benefit, or so you can get down the Slug and Lettuce?”

The manual flush turned out to be a very easy procedure, which involved not doing any kind of flush whatsoever (a flush is where there put a small amount of saline solution down the line into your arm, to make sure you get any treatment left in the line).

I was going to write her lines in some kind of cockney accent for effect, but I decided not to for two reasons:

1 – I remembered this blog is supposed to be about accuracy and honesty.
2 – She wasn’t in the least bit cockney.

And in that spirit I should admit that I wasn’t brave enough to say my lines in that little conversation recital – I did think them though, which I believe makes me kind of brave, to a certain extent.

Anyhow, aside from that little detail, and a slightly bruised vein in the back of my hand, all was fine. Now to see if the lightheaded episodes get any worse after this dose of chemo – and the preliminary results are in… yes, it’s got worse.

In other news, I have made a little resolution – to stop moaning about my appearance.

While on the train home from London on Wednesday a little girl, maybe ten years old, got on the train with her Mum. The girl had a quite severe facial disfigurement, with most of her facial features hard to distinguish, from what looked like some kind of serious burn injury.

I looked at her, and thought that if she manages to cope with that permanent disfigurement, especially knowing how horrible kids can be to each other over the slightest little differences, then I really should not be moaning about being (hopefully temporarily) a bit fat with a round face.

Its funny how life can sometimes make you put your own problems in perspective.

This doesn’t mean that I’ve suddenly got my confidence back in my physical form, those issues won’t just go away. But it does mean that I recognise that in the grand scheme of things, it could be worse, and I should appreciate that fact.

Right, I think I will leave it there for today. Next time, Saskia!


Filed under Battle with Melanoma

Dark Days

So I know you have all been in suspense and checking the blog daily (in some cases hourly) after the exciting cliff hanger at the end of my last post…

Well the answer is yes, I made it to the bathroom and didn’t collapse (you did care, right..?).

I also managed to drag myself to London on the Friday for the first infusion of my new chemotherapy treatment. I was actually given two infusions – a chemotherapy called Carboplatin, and something called a bisphosphonate, which is to help with the bone disease (in my spine and arm). The nurse told us that the bisphosphonates can make things worse before it gets better (where have I heard that before?!). So just as I ended the ‘worse before it gets better’ period from the previous week’s radiotherapy, I began the bisphosphonates ‘worse before it gets better’ period.

However, a week and a half down the line, and I think things are improving – it’s slow progress, but it’s in the right direction at least. The pain in the upper arm (where the cancer is located) is subsiding, just leaving me with a bit of sensitivity and nerve pain lower down the arm and in the hand – which is an annoyance as much as anything. The pain in the upper arm will reappear if I do anything strenuous with the arm, so I have to make sure I keep it rested.

My back has improved slightly, which is a welcome relief. The pain and stiffness is still there – I have trouble bending, standing, sitting (depending on position) and can’t walk a great distance. However, the degree of pain is less than it was, which means I can do each of those things a bit more than I could a couple of weeks ago. So my overall mobility has improved, although I am still hoping for some further improvement over the next week or so.

It’s difficult to know exactly what is behind this upturn, as I am now on so many treatments. There’s the radiotherapy, the bisphosphonates, the painkillers (paracetamol and codeine), and I am also now whacked up on a drug called Amitriptyline. Amitriptyline is an anti-depressant, but is also used in lower doses to reduce nerve related pain (specifically the pain in my hand and the sciatic pains down my leg). The doctor also seems to view its anti-depressant benefits as a good thing.

I have found myself with a bit more energy the last week or so, and have made good use of this and my improved mobility by expanding my horizons beyond the bedroom and Comedy Central channels – I have been to see Saskia on the swings at the park, and to see her swimming at Faversham pool. It’s all little steps, my energy levels are still rubbish – but it feels good to be going in the right direction, and most importantly to be able to share in these moments with Saskia again.

In truth I had felt a little distant from her of late, which has been hard. Due to spending all day every day in the bedroom, I hadn’t been spending the time with her that I had previously. Sally would bring her in to see me, but it wouldn’t be long before she was bored and had to be taken elsewhere to expend her boundless energy. I wasn’t getting involved in playing with her, bathing her (my job before I got ill), or any of her outings to the park, swimming, etc. When Sally did bring her to see me, her interaction with me was different to before – rather than make stupid grinning faces at each other (pretty much the basis of our relationship) she would just stare at me and not respond. But that seems to be changing – as I’ve been getting more involved again over the last few days that interaction has started to come back, and we have had some lovely moments, which is a big relief.

That brings me onto something I wanted to talk about – which is almost a little ‘half-yearly summary’ of how cancer has affected my life since my diagnosis five months ago. Before I start though, I want to say I am aware that this next section might sound like a ‘poor me’ sympathy plea for loads of messages telling me how brave I am and to stay positive – but that’s not what I’m trying to do. So bear with me, hopefully my intentions will become clear…

The last month or so has without doubt been the hardest period of this battle so far, with the combination of fatigue (both physical and mental), pain in the arm and back, and just generally being confined to the house (or worse, bedroom). As a result, it has also been the biggest test of our resolve, and it has been very hard at times to stay positive. I was spending every day in one place, in pain, and beginning to lose the hope that things would improve. One night while lying in bed, I stopped to compare my life now, to the day before I was diagnosed – something I had not really done before. What I realised is that cancer has stripped away pieces of my life, one by one. Because it has happened gradually over a period of months I have just dealt with each blow as it has come along, got over it, and moved on – but by comparing my start and end points, it really hit me how much this disease has affected my life.

I have lost my independence – I can no longer drive, something I used to really enjoy. Now if I want to go anywhere Sally has to drive me, which then means Saskia coming, which might not fit with her routine, etc. No longer can I just take myself off to B&Q on a Saturday afternoon to add to my extensive collection of screws and rawl plugs for that DIY job I had been wanting to do (perhaps with a sneaky stop at the McDonalds drive through for a milkshake); I can’t drive myself into Canterbury to spend money I don’t have on camera bits from Jessops (possibly a good thing); I have to ask Sally to drive me to the place where I want to buy her birthday present, making it blindingly obvious what I am going to buy her.

I feel I have lost part of my identity – when I see myself in the mirror, I don’t associate what I see with my perception of myself. I see a short, fat, round-faced, bald man – I see Seth from American History X (a fat neo-nazi – if you haven’t seen the film, watch it). Ok, so I have never been that tall, and have always been a bit fat, no arguments there. But not having an perfectly spherical face and having hair gave the illusion of a couple of extra inches I think! Due to the back pain my walk has started to resemble a waddle, which is not a dignified look. I find myself conscious of people’s perceptions of me, and constantly aware that my outward appearance does not match with the way I think of myself.

I have lost my energy and physical mobility – this contributes to a more general loss of identity beyond my appearance, in terms of the other ways in which we define ourselves. I can no longer take part in many of the activities I used to enjoy. I walk around the house and see skateboards, surfboards and bikes around the place – all currently redundant. I have been off work for five months now, and whilst that might sound great, at least while working I had a purpose. I have begun to miss that, and recently begun to feel a little ‘aimless’ (or worse, pointless!). Sure I can still watch TV or play X-Box, as I did before – but the difference then was I had done a days work. It doesn’t seem quite right to get out of bed, shower, and get stuck straight into X-Box without doing something productive first. But I don’t necessarily have the energy for anything productive, so I find myself at a bit of a loss.

All of the above has also contributed to a general loss of confidence – both psychologically and physically. Psychologically, when you feel like a hamstrung, stifled version of your old self it’s difficult to have the same confidence that you had previously. And physically the loss of my vision means that I am still not as confident out and about in certain situations. Navigating busy places (supermarkets, stations, etc) is tricky. People come at you from all angles, and usual convention is you see each other, and both take evasive action if required. Except I don’t see people coming at me from the right, but they don’t realise that – which has predictable consequences. I find myself devoting so much of my focus to compensating for the vision loss, that it saps my general confidence out and about – I know that sounds odd, and I can’t really explain why it is.

It has also affected my relationships – as described above I feel I have lost time with Saskia (although I intend to fully make up for that). I am also a bit of a social recluse these days, for a number of reasons – I’ve missed numerous opportunities to see friends due to being unwell.

And finally, a little story… a week or so ago Sally was going on a hen night with a group of other mums with children around Saskia’s age. When it came to babysitting arrangements Sally and I had to discuss whether it was better for Saskia to stay at home with me, or go to spend the night with one of the other dads. The idea was perfectly sensible given the circumstances – in my condition it would have been very difficult for me if Saskia had had a bad night. But it hurt so much, and I felt so inadequate, that I’d reached a point where I wasn’t even capable of babysitting my own child.

So there we go, my little ‘progress report’ – when I took a step back and looked at the last five months, it shocked me just how much I have actually lost to cancer in that time. I have lost elements of my identity and confidence – and the horizons of my world (both physical and metaphorical) have gradually receded, until I find my world consists mainly of the house, and just a small selection of the things I used to enjoy doing.

It made me realise just how hard fighting cancer is, and what is involved. It’s not just about fighting the disease, the pain, and the side effects – it’s about fighting for all aspects of your life. Because bit by bit, it will strip away your world.

I think back to four or five months ago, when I had barely any symptoms, – it was easy to talk about fighting cancer and staying positive. Well, as time has gone on, the ‘fight’ has got harder and harder, and on more and more fronts. I now have a better understanding of exactly what fighting cancer involves – and it’s tough. And I’m sure there will be more tough times to come.

As I said above, I’m not writing this as a plea for sympathy. I’m writing this because I want this blog to be an accurate and faithful representation of my experience, a cross-section of what it is like to ‘fight’ cancer – the good days and the bad. So I decided that after what has been our lowest period since this began, it was important to share the experience.

Thanks for reading.


Filed under Battle with Melanoma

Vital Statistics

So week one of our new regime is done. Rather than bore you with reams of text this time I thought I’d just list a few key stats from the last week…

  1. Times out walking in the park – 10 (started Monday)
  2. Distance walked – 25 km / 16 miles
  3. Times thought might get beaten up in the park – 1 (sinister things have happened in that park)
  4. Times beaten up in the park – none (hurrah, what a lovely, idyllic park!)
  5. Cuts on feet from deciding to walk in flip-flops – 3
  6. ‘Treat’ meals – 1
  7. ‘Healthy’ meals – the rest
  8. Times wanted fish and chips – lots (depending on wind direction you can smell the nearby chip shop from our road / garden)
  9. Times had fish and chips – none (boo!)
  10. Meditations completed – 5 (missed a couple with Saskia teething)
  11. Juicers purchased – 1 (arrived yesterday, assembled this morning)
  12. Juices consumed – 1 (melon, blueberries and kiwi – very good)
  13. Steroid dose – 6 mg (originally 16 mg, reduced by one more tablet this week)
  14. Headaches – none
  15. Back pain – 3 out of 10
  16. Guns n’ Roses albums listened to – 3 (not nearly enough)
  17. Arguments with Transport for London as to whether being told you have brain cancer is an acceptable reason for forgetting to log in and pay the congestion charge that evening – 1 (apparently it’s not – thanks for that TFL, what a compassionate bunch you truly are)

There we are then – the upshot of all that (apart from TFL’s ‘contribution’ to our cause) is that I am feeling good and positive, both physically and mentally.

Hanging out in the pub

A few weeks ago I couldn’t have imagined walking sixteen miles in five days, let alone feeling much better for it.

And mentally it feels like we are taking control of the situation – doing everything we can from our side, while the doctors do their part.

Right, I promised not to bore you so will leave it there for now. Except for a little picture of Saskia taken yesterday (click on the image to see a larger version). Incidentally she celebrates being nine months old today – happy nine months to Saskia.


Filed under Battle with Melanoma

A melting pot of news…

So I thought I’d post again to update you on everything I didn’t manage to fit into Monday’s post (which is quite a lot!).

Firstly then, an update on how I am feeling – not too bad thanks. The radiotherapy certainly seems to have had a positive impact on the brain situation – I’ve not really had any head aches or pressure since the treatment. I have reduced my steroids to half the original dose, and stopped taking codeine about a week ago (leaving me just taking paracetamol in terms of pain relief for my back). Cutting down on the steroids has had a positive impact in terms of reducing my appetite (back down from six meals a day to a paltry three!), and reduced considerably the profuse sweating (a bonus for everyone who has to come near me). The plan is I gradually keep reducing the dose until, hopefully, I can come off them entirely.

Unfortunately I still have the excess weight gained during my rabid, non-stop eating phase while on the higher dose. I have generally put on weight, but another effect of the steroids is that it tends to collect in certain areas – for example round the cheeks and neck, which means I now have an almost perfectly spherical face. I have also developed a ‘hump’ on the back of the neck. This is all part of ‘Cushing’s syndrome’, which occurs as a result of prolonged excessive exposure to the hormone cortisol (i.e. the steroids). I didn’t realise I had a hump, until reading aloud the symptoms of Cushing’s syndrome from Wikipedia – at which point Sally confirmed that, yes, indeed I did have a little camel hump. Only unlike for a camel it serves no useful purpose for me, not even as a small makeshift pillow for hospital waiting rooms.

In addition to my round face, I have lost my hair due to the radiotherapy. They said it might fall out, or thin, or do nothing (covering all bases there then). It started to fall out Tuesday last week – thinking it might just thin a bit, I tried to just get all the loose hair out in the shower. Putting wax in it after my shower resulted in very hairy palms. Wednesday I did the same, and tried again on Thursday – only that time there wasn’t an end to the loose hair, it didn’t stop coming out. As we were off to the Marsden I had to make the best of what was left – but I did look a bit mangy, complete with bald patches that merged with other bald patches throughout the day. So Friday morning we went at it with clippers and a razor, and took the lot off.

I am quite enjoying my new look – partly due to novelty value (probably not something I would have tried otherwise), and partly because I now have more reason to make use of a fine and varied collection of hats (not so much to hide it, more to protect my newly exposed scalp from the newly exposed sun). I do still find myself slapping shampoo on my head in the shower, before remembering that it’s no longer necessary.

The shaved head in conjunction with the round face does mean I now bear a striking likeness to the full moon. For a small fee I am currently available for any lunar-themed kids parties or events.

The vision situation hasn’t improved, and I managed (with some effort!) to get the doctors to admit that it probably now won’t. They said the steroids might help it – but once I pointed out that I have been on high dose steroids for the best part of a month, with no improvement, they admitted it was unlikely to return. Which isn’t great, but in truth if I get out of this with slightly impaired vision, I’d take that in an instant. I’m starting to learn to compensate for it and so it has been bothering me less of late.

The radiotherapy did take it out of me a bit last week – although not to the degree of ‘withering wreck’ (hopefully I am safe from having to eat those words). I didn’t feel too bad, but there was an underlying level of tiredness. This week my energy levels seem closer to normal, which is reassuring. The doctors also seemed sure that any reduced energy was due to the treatment, rather than anything more sinister.

And finally my back seems to be fairly stable at the moment, perhaps having even improved recently. I still can’t stand still in one place for a prolonged period without getting pains down the legs, but in terms of mobility I have been fairly active over the last few days, and it has given me very little grief.

So that’s enough about my physical state – what have I been up to over the last couple of weeks instead of blogging?

Well Monday last week I finally managed to get round to arranging the photography lesson (or to be more specific, ‘processing photos on Adobe Lightroom’ lesson) that I was forced to cancel on that fateful day when my head nearly exploded. A big thank you to John at White Light Photography (the same guys who did our beach photo shoot) who came round and spent two hours with me showing me how to organise and process my photos.

Armed with my newly acquired knowledge, I have been taking time to sift through my photos from the last year or so, and pick out and work on my favourites. Rather than just leave them on the computer for no-one to see, I’ve decided to set up a page to host them on Smugmug – if you want to have a look, I have added a link into the sidebar to the right of the blog, or click here > seebensphotos.smugmug.com

It has been great to finally take some time to make something of these photos. They’ve been taken over the last year since I bought the camera, but they have just been sitting on the computer doing nothing, with me never having the time to play with them or try and make the most of them. I still consider myself very much a beginner photography wise, but I am enjoying the experience of learning.

We were also able to arrange for my Dad to visit last week – which was very enjoyable. We managed to coordinate it so he could come along and see Saskia swimming – she was on good swimming form too, less focused on drinking the pool water this time, more focused on being good at swimming.

On the subject of Saskia, she has finally cracked the art of crawling – first managing it a couple of weeks ago. She’s not been off everywhere as we perhaps expected – but she is now able to deliberately move around when she wants to. She will purposefully move across her play mat when she decides she wants to get to something over the other side for example (sounds like there is some kind of ‘why did Saskia cross the play mat’ joke in there somewhere – I’ll work on that for my next post). Unfortunately for Pickle this means that placing himself just beyond her reach is no longer sufficient to avoid clumps of his hair being tugged – he now has to learn to use altitude to his advantage if he wants to sleep without keeping one eye open.

And the news I know you have all been waiting for – Saskia’s sunglasses have arrived! Given the rubbish weather, today is the first real opportunity we have had to try them outdoors – and as predicted it might take a bit of getting used to before she stops trying to take them off. But here is a picture from yesterday of her doing ‘a Bono’ and inappropriately sporting sunglasses indoors – I think you will all agree she looks pretty cool (far cooler than Bono anyway).

Cooler than Bono (and actually better at writing songs)

The other big focus of the last week or so has been researching and working on our all round, integrative treatment approach. Obviously the hospitals and doctors take care of the ‘conventional’ treatment (chemotherapy, radiotherapy, pain relief, etc) – but that is just one aspect of our approach to tackling this. We have been working toward an all round plan for some time, but it’s been slow progress given hospital appointments and just trying to stay on top of every day life given all that’s going on (I never realised how much admin having cancer can actually involve!).

But we seem to have finally made a breakthrough – both in terms of research avenues bearing fruit, and actually making the changes to our lifestyle. As mentioned in my last post, the news last week has also given us the kick up the arse we needed to actually take the difficult decisions that we need to.

You might have noticed that I am saying ‘we’ and not just ‘I’. That’s because Sally is being amazing and joining me in making many of these lifestyle changes, recognising that (particularly where diet is concerned) there’s no chance of me eating a bunch of cold salad if she is sat in front of me with lovely sausages and mash.

So what are we doing? I won’t go into all the details, but here’s the general idea…


Every day now after breakfast I am doing two brisk laps of the recreation ground behind our house, which according to my phone is 2.5km / 1.6m – usually taking me half an hour. The morning is non-negotiable – but if I get time (depending on whatever else we are doing) I am aiming to do the same in the afternoon. So far I’ve managed both mornings and afternoons the last few days. After a period of inactivity given the brain situation it’s nice to get off the sofa and get some exercise. It really does make me feel better – obviously it’s good for me physically, but also mentally in the sense that I still feel I can get up and walk three odd miles in a day, without being hindered by my back, the disease, treatments, etc. That feeling helps contribute to the whole ‘keeping positive’ thought processes.



So we are making some big changes to our diet – but sensible changes (we’re not going down the route of living on nothing but wheatgrass!). Sally has been incredible, throwing herself into online research and books about cancer and nutrition (after my CT scan Thursday she busied herself in the nutrition and food section of Waterstones, while I had a forty-five minute nap in one of their comfy armchairs – I did fully expect to get ejected from the store, given that I looked like a moon-faced hobo with half a head of hair who had just gone in for a sleep, but I was left alone). She has identified foods for us to try and reduce or eliminate, and foods for us to try and increase our intake of. Again, I’m not going to go into massive detail (because it’s probably really quite dull for the rest of you) – but essentially what we’re doing is this;

  • Dramatically increase intake of fruit and particularly veg, to eight portions a day minimum (especially raw stuff – salads, etc).
  • Incorporate juicing into our diet – by this I don’t mean fruit juices from Tesco, I mean buying a juicer and juicing raw fruit and veg as a way of getting concentrated nutrients into our diet.
  • Reduce red meat (now only allowed as a treat when eating out).
  • Reduce animal proteins in general (but not eliminate entirely – like I said, sensible approach!).
  • Dramatically reducing sugary treats and snacks (chocolate, biscuits, ice cream. etc).
  • No alcohol – this one I am doing alone. I haven’t drunk for about two months, and at a time like this I just don’t feel like it. So watching Sally have the odd glass of wine is no problem for me.



Basically this involves reducing stress and trying to incorporate relaxation techniques and times into our daily routine. So we’re being careful about over committing ourselves, simplifying things like how we managing our finances, and have started to incorporate meditation daily.

It has to be said, meditation is far harder than I thought it might be – I always thought it was easy to switch my brain off (generally if I sit still for more than ten minutes I fall asleep). But it has been proving far harder to empty my brain of thoughts than I expected. Even so, I think it is still beneficial to just stop for a period each day, and take some time to just do nothing – and as we get better at it the benefits should only increase.

This section also includes positive thinking, visualisation, and some other areas we haven’t yet explored – such as hypnotherapy, psychotherapy, and music therapy. Of those three I’m not sure if hypnotherapy is for me. Psychotherapy possibly – it has been offered, but so far this blog has pretty much been my psychotherapy, so I haven’t gone for it. That’s not to say at some point in the future I won’t. Music therapy I think I could definitely go for, being a big music fan. I used to listen to music in the car, but now I can’t drive that’s not happening anymore. For the first time in a long time I am listening to music as I type this – Guns n’ Roses. Right now I am thinking that Guns n’ Roses should definitely form a much larger part of my treatment program going forward (old Guns n’ Roses, not so much new Guns n’ Roses).


Herbs / Supplements

So there are a number of substances that have shown possible promise in fighting melanoma – sometimes in human trials, other times with lab grown cancer cells or animal trials – and many of these are available as nutritional supplements. Don’t get me wrong, we don’t expect any of these to be a sudden miracle cure, and one could spend a fortune if one wanted to on everything that had at some point been rumoured to have a benefit. But some well placed and targeted research has thrown up a few things of interest.

An important question is whether or not to take these while undergoing the conventional medical treatments, should they cause any interactions or interfere with the action of the chemotherapy or radiotherapy. So I haven’t been taking anything so far – but now I am in a period of no conventional treatment, this avenue does become an option.


So there we go – that’s an insight into our integrative approach. It is going to entail some difficult choices – personally the diet aspect is going to be the hardest for me. I have asked numerous doctors about diet, and the answer I generally get is that I should go home, and eat what I want (although with an emphasis towards a balanced diet). Which always leaves me wondering whether I really should eat that Easter egg, or leave it well alone. On the one hand you have the doctors telling you diet won’t make a difference, on the other hand there seems to be plenty of credible evidence that diet can help in your fight.

So who to believe? I’d like to believe the doctors, and just eat pizza every night followed by Easter eggs for dessert – but when the stakes are this high, I think it makes sense to hedge your bets on the eating healthily side. Let’s face it, as long as we are sensible and don’t go on any mad ‘fad’ diets, it’s not going to do me any harm – and if it does help will have been well worth it.

Right, that’s about it for today I think – thanks for reading.


Filed under Battle with Melanoma, Other News, Saskia News

Long time, no write…

Hi all,

Apologies I haven’t written for a while. After a fairly active period on the blog with all the brain / radiotherapy news, I decided for my ‘week off’ treatment that I would focus my energies elsewhere for a bit of variation (more on that later). And since Thursday I just had to take a break from thinking about cancer and treatments for a few days.

Obviously most of you will have seen Sally’s post on Thursday – yet again another disappointing trip to the Royal Marsden. Since my ‘relapse’ I am yet to walk out of those doors having heard the ‘good’ news option – it always seems to be the ‘bad’ news. Next time I am considering just staying at home, assuming it’s bad news, and saving ourselves fifty pounds on train fare and a whole lot of waiting around.

In truth, while obviously we were hoping for the best, it was not a complete surprise that the chemotherapy was not deemed to be effective. The doctors at the Marsden typically state the positive response rate to be only ten to fifteen percent of patients, and then usually only for a limited time.

What was unfortunate, and made the news more difficult to take, was a bit of a mix up prior to seeing the doctor. I had a provisional appointment booked for Friday to have the chemotherapy if we were going ahead. While waiting to see the doctor I was approached by a nurse, told I was having treatment Friday, handed two blood forms saying ‘pre-chemo’, and told to go downstairs for a blood test.

“Result!” I thought, “that means the chemo was working, doing something at least”.

For the first time in a while I thought I would be leaving the hospital with some positive news, and found myself in the seemingly odd position of being ecstatic about the prospect of receiving chemotherapy.

Then suddenly it dawned on me that maybe the doctors hadn’t reviewed my scans yet, and the nurse had just acted on the basis of my provisional appointment. I quickly tried to temper my excitement, and decided I wouldn’t believe it until I heard it from the doctor. But it was difficult not to have some level of hope – thinking to myself “I’m sure they would have checked everything properly”.

Going through countless scans for cancer and waiting for results have generally been the most harrowing times of my life – it’s pretty indescribable. After a scan I find myself analysing in great detail the attitude of the staff towards me for signs of pity; in waiting rooms I wonder if I am being left until last because they need a senior doctor to break bad news to me; and so on.

What I’m trying to get across is that when one spends so much time trying to read things into things that don’t actually mean anything, it’s very hard not to get excited when someone explicitly says to you, “you are having treatment tomorrow”.

Anyway, as you can probably guess it was just as well I did at least partially prepare myself for bad news to follow – as it turned out I wasn’t to have the chemo after all, and had therefore had yet another needle stuck in my hand for no reason whatsoever (much of the time I feel like a pincushion nowadays).

So that wasn’t the best start to my chat with the doctor – I was obviously disappointed, and angry that such a mix up had been allowed to happen in the first place. But these things happen unfortunately.

Putting that incident aside, what they told us was this – the disease has progressed despite the chemotherapy. Not dramatically so, but enough to not continue with that particular treatment. Which leaves us with two options:

1 – ‘Symptom management’ – two words no patient wants to hear.

2 – Treatment with Ipilimumab (or ‘Ipi’) – a new-ish drug, and what is known as a ‘second line’ treatment (the chemotherapy being a ‘first line’ treatment).

We have been aware of Ipi as a second line treatment option for a while, and it has generally been accepted that if the chemo didn’t work then Ipi was the automatic next step. What took us by surprise in Thursday’s appointment was that I was strongly advised away from this option, and towards the ‘symptom management’ option.

Ipi works by boosting the immune system, to try to help it to fight the cancer more effectively. Now like most anti-cancer drugs it has side effects, and (like most drugs aimed at fighting melanoma) not particularly high response rates. One of the side effects of Ipi is colitis – which I have already, due most likely to an overactive immune system (hence I am on immuno-suppressive medication to manage the colitis). So in a nutshell, the position of the doctor we saw last week is that Ipi represents too great a risk to my health and ‘quality of life’, given my existing colitis, for what he sees as the questionable chance that it will be effective.

Which was, as you can probably imagine, all pretty uninspiring to hear – and leaves us with an awful lot to think about. I find myself in a catch twenty-two situation – with one medical condition that requires suppressing the immune system, and another for which we want to boost it.

In truth, again perhaps we should not have been entirely surprised at the negativity over the Ipi route – I have been aware that the doctor we saw has had reservations about Ipi as a potential treatment option for me from the very beginning. However, we have had more positive discussions regarding Ipi with the other doctor who jointly leads the melanoma clinic – his take last time we spoke was that colitis was the lesser of two evils, and we would have to take the risk and manage any colitis flare up. Unfortunately my situation has changed since that conversation – at the time we didn’t know that the cancer had spread to the brain. So it could be that his opinion would now fall in line with the doctor we saw last week, and he would warn me away from Ipi too. But either way we would obviously like to hear what he has to say – unfortunately he won’t be available to discuss this with us until next week (having had the nerve to go on holiday at such a critical time in my treatment!).

However, it doesn’t look like this will hold us up significantly if we do decide to go for Ipi. It isn’t yet (as I understand it) freely available on the NHS as a licensed treatment – so the Marsden have to make an application for funding, which can take two to three weeks. They have been kind enough to initiate that process immediately, to minimise any hold up should we decide to go for it. Which means that we have time to take over our decision, and can meet with the other doctor once he is back, all within that two to three week window.

So there you go – that’s where we are right now. It was obviously a disappointing meeting – but yet again we have picked ourselves up, as we are becoming very adept at doing (thanks to plenty of ‘opportunities’ to practice!). I’d be lying if I said there hadn’t been some hard moments over the past few days, but we decided to put starting the Ipi research and decision on hold for a few days (given the lack of any immediate time pressure), and throw ourselves into positive and enjoyable things to keep us in good spirits – and I would say we have bounced back pretty quickly.

What I have said before in this blog still stands – we are not giving up, ever!!! There is always hope, and dwelling on negatives and what might happen before it does happen will only compound matters. Sally and I promised each other at the beginning of this that we would just deal with what is immediately in front of us, and that is what we’re doing.

Also, I don’t want to say too much about it at this point in time, but there is a another avenue we are exploring. It might come to nothing, but it’s nice at this point in time to feel we have other options.

And in a way, this appointment on Thursday was perhaps the kick up the arse that we needed to make some other big lifestyle changes to give myself the best chance of beating this (again, more on that later).

So that’s all I’m going to write for now – I had intended to write plenty more, about what we’ve been keeping ourselves with busy since my last post, the above mentioned lifestyle changes, my general condition (not bad, just so you know), etc. But I have already written nearly fifteen-hundred words, have run out of time for today, and want to get this post out there quickly so you know we are ok, and I’m not spending my time trying to throw myself under buses or down any wells.

As always, thanks to everyone for their messages of support over the past few days – it really does make a massive difference.

I will post again soon.


Filed under Battle with Melanoma

Why me?

Evening all – I thought it was about time I gave you an update on the last few days…

In truth, they have had their ups and downs. I have been struggling to adapt to my lack of vision – becoming increasingly frustrated with my general loss of function and coordination. I seem to only be able to operate at half the pace I used to. Meanwhile, general household life continues around me at its usual tempo – baby, meals, tidying, shopping, etc – leaving me feeling at best like a spectator, and at worst just in the way.

Each day I wake up with a list of things I’d like to achieve – and in most cases achieve very few of them. My reduced dose of steroids lasted all of a day – Saturday morning was spent lying in bed with a headache. So I went back up to a dose midway between the new and previous dose, which seems to be keeping things stable for now, and is at least a reduction of some kind.

The lowest point came Friday afternoon, as I walked down our street, and straight into the wing mirror of a parked car – I felt like an idiot. So I continued walking along, smouldering to myself as I contemplated what had just happened.

A few paces later, I walked straight into the wing mirror of a parked van. Needless to say this second incident did nothing to alleviate the frustration and embarrassment of the first.

It didn’t hurt that much (physically at least), but it hurt my pride. For someone who generally considers themselves a pretty coordinated person – enjoying the odd turn on a mountain bike or skateboard – the sudden inability to navigate a quiet residential street without walking into successive parked vehicles is quite frustrating.

The worst part of it was (and I’m ashamed to admit this, but this blog is supposed to be all about being honest) is that I found myself asking Sally why she didn’t see I was about to walk into the van. Which is obviously ridiculous – if I haven’t yet figured out what is in my vision and what isn’t, then how on earth is Sally supposed to know!? I knew it was wrong straight away, and apologised immediately – but still felt bad that I had let my frustration get to that point.

So undoubtedly the last few days or so have had their moments. However, I woke up this morning determined to try my level best not to let this get me down or feel sorry for myself. Things could be worse – I still have most of my vision, and I still have all my other senses and faculties unaffected (at least no more than normal!). I am endeavouring to manage my situation, and when it does go wrong, laugh instead of getting angry. As I discussed in my very first post, keeping a positive attitude is only going to do me good in this fight – getting down and negative will just compound my problems.

Which brings me onto something I have been wanting to discuss on the blog for a while – maintaining a positive outlook. But first of all, I want to share a picture with you all, taken from the cover of the Royal Marsden ‘Progress’ magazine. Now for the celebrity / royal fanatics out there, the picture does contain Kate Middleton (or whatever her married name is now), but I want you to look at the other person in the picture – yes, sometimes there are other people in pictures of her too – and no, I don’t mean William, or even Pippa Middleton…

I first saw this picture about six weeks ago – I was in the CT scan waiting room of the Royal Marsden, waiting to have a scan of my head to find out if there was any cancer in there, and therefore whether or not I could go on the clinical trial previously mentioned. I knew that the next day I’d be back in the hospital, either being told I had the opportunity to receive what could be the next big thing in melanoma treatment – or that no, I wasn’t allowed to have that, and by the way there is cancer in your brain (we all know what happened by now).

So it’s fair to say there was a lot riding on this scan, and I felt suitably tense. As I sat there nervously waiting to be called, my eyes fell upon the picture on the front of this magazine – and suddenly my own problems didn’t feel so important any more.

I was looking at a picture of a child… a child that didn’t look a great deal older than Saskia… a child with cancer…

I’ll be honest, the picture made me cry, due to a whole range of emotions. I felt sadness, as I pictured that child being Saskia, reaching out to me, and imagined how terrible it must be as a parent to see your child, the most precious thing in your life, ill with cancer. I felt anger and despair, that anyone gets cancer, but especially a child.

Most of all, looking at this picture put my own situation in perspective – I resolved that I was not going to feel sorry for myself, or indulge in self-pity. Having cancer is undeniably scary, and the treatments themselves are often scary – but I thought if that little child has to go through this ordeal, then why shouldn’t I have to?

It’s a bit of a cliche, but unfortunately cancer doesn’t pick ‘good’ or ‘bad’ people, or just land on people who ‘deserve it’. Twice recently I have heard cancer patients (one old, one young) asked if they wondered “why me?”. In both cases the response was the same – “why not me?”. As much as we’d all like to construct a rational case as to why some people get cancer, you just can’t. Cancer isn’t rational, or logical – it just happens.

The picture above also brought home to me that in actual fact I have a lot to be thankful for. Sure, I don’t want cancer (wish I could find the receipt), and I’m statistically unlucky to get it at my age – but still, I could have been statistically unluckier (i.e. younger). I have had some amazing opportunities in life – a fantastic family; great friends; an amazing wife and wedding day; and now the most magic thing of all, Saskia.

Sally and I have been so lucky with our little girl. We were blessed to discover we were going to be parents only a month or so after making the decision to ‘go for it’ (at least there is one part of me that’s healthy!), and were fortunate enough to have a relatively uncomplicated pregnancy. It’s not lost on me that we were very lucky – and given my current circumstances, I am immensely grateful for that.

Now don’t get me wrong – I am aware this might be beginning to read a bit like a “it’s all ok, I’m satisfied with what I’ve achieved in life, I’m off out of here” post. Which couldn’t be further from the truth.

What I am trying to say is that yes, having cancer is crap. But it is so important to remember the things in life that you have to be grateful for – because they are out there. Each of these positive things is another reason to fight, and not to accept this disease – and fighting with your focus on the positive things in life has, to my mind at least, got to be the best way to fight.

Over the last couple of months I’ve had a lot of wonderful feedback, containing words like ‘brave’ and ‘inspiration’ – which has been so very moving and motivational, and has helped me stay positive. However I’ve come across many other people in similar situations (in hospitals, via other blogs, on tv, etc) to whom those words are equally applicable. In fact every other cancer patient I have come across has shown amazing strength and courage, and been an inspiration to me – from people dealing with cancer late in their life, to the little child in that picture having to deal with it so early.

So there we go – apologies this post was a bit of a heavy one, but I felt the time was right to share something that had a profound impact on me, and also pay tribute to the attitude and strength of all the others out there going through similar experiences.

For tomorrow, as a reward to you all for making it through this post, I have some happy Saskia news and photos for you.


Filed under Battle with Melanoma

The beginning of a journey…


I never really thought of myself as someone who would keep a blog – to be honest I couldn’t think that my life or opinions were interesting enough to warrant documenting for the world to read. I could have ranted endlessly about the Daily Mail, but that would have got boring after a while (for you I imagine, probably not for me).

But in the last month or so things have suddenly got a lot more interesting, but unfortunately not in a good way – I have been diagnosed again with cancer.

Some of you may know my history – almost 5 years ago I was found to have a malignant melanoma (a form of skin cancer) on my left shoulder. I was 27 years old, otherwise generally healthy, and had never been near a sunbed in my life. The odd bit of sunburn as a teenager while prancing round Cornwall trying to become a surfer, but nothing major.

It was surgically removed, and after a lot of debate (for about six months) between doctors as to whether it had spread, I was given the ‘all clear’ and sent home.

Two years later it was detected in a single lymph node under my left arm. I was promptly back in for surgery, and had all the lymph nodes from my left armpit removed. Some more scans later, and I was again given the ‘all clear’ (albeit qualified with ‘as far as we can tell’).

The three years since then have been characterised by worries about recurrence, trips to various hospitals for scans and biopsies on various innocent lumps and bumps, and wondering whether I was becoming paranoid and beginning to annoy the doctors with questions about lumps on my testicles.

So in January this year, when I started to develop some lower back pain, I worried about cancer. But I told myself I was being paranoid, and put it down to having a new baby – lifting her up, hauling prams in and out of cars, bending over doing her bath and changing nappies, etc. So much so that I nearly didn’t mention it at my six monthly check up at the Royal Marsden (for those who don’t know, generally ace cancer hospital in London – one of the best places in the country).

In the end I did mention it, just in passing I hoped…

“Bad back? No, that won’t be cancer, probably something like a new baby or something”.

“Great, thanks Doc, see you in another six months”.

Unfortunately the conversation didn’t go quite like that. An MRI on my back and a CT of the rest of me later, and in late February I was told it was back, and had brought friends to play this time – on my spine, in my liver, lungs and spleen (what does a spleen actually even do?).

This news obviously came as a massive blow, and the weeks since then have been a real roller-coaster (and I don’t like roller-coasters!). I won’t bore you with all the details, but in short I had just picked myself up from the knock of the initial news, when I got more bad news – I couldn’t go on a clinical trial of a promising new drug as my melanoma didn’t have the right gene mutation.

Ok, pick myself up and get positive again, there’s another trial I can go on. Except that a week later (last week) I was the told I can’t go on that one either due to the location of my cancer – another blow to pick myself up from. The only treatment option available to me (at present) is the standard chemotherapy treatment for melanoma.

So that’s where we are. I started chemotherapy treatment Monday (two days ago). One silver lining of being on the standard treatment is that it is apparently relatively well tolerated. The infusion of the chemo only took about an hour, into a cannula in my arm. And other than a slightly foggy feeling and a few hot flushes on the train home, since then I have felt fine. No nausea, tiredness, sickness (they give you anti-sickness meds). There might be other side effects to come later in the cycle (each infusion and the following weeks leading up to the next infusion is known as a ‘cycle’), but so far so good.

Then in three weeks I am back in for my second infusion of chemo . Three weeks on from then I have another scan. If the chemo is working then I carry on for another four cycles – if not then I come off it and we try something else.

To be honest after all the trips I have had to London in the last month or so for scans and results it’s just nice to know that I don’t have to go back for three weeks.

So there we are – cancer has motivated me to become a ‘blogger’. Why?

Well in all the turmoil and upheaval of the last month it’s been difficult just keeping on top of everyday life – Saskia, the house, etc (fortunately I am currently signed off work). In the course of all that I have been relaying the news to various people – but I knew there were many good friends who I had not come across in day-to-day life who had no idea what was going on. Hence, the ‘blog. I figured this would be a great way to disseminate news and keep people up to date, without me having to say / type the same thing again and again – and for people to follow my progress, leave messages of support, etc (or abuse if you feel that way inclined).

Don’t worry, I’ll try not to make it all about cancer. I’ll put in nice stuff as well – news and photos of Saskia, other photos, and just general news of what we have been up to. The cancer is the motivator for starting this blog, but will not be the sole focus. It’s important to focus on the positive as well.

Speaking of positive – despite all the recent bad news and stress of the last month I am remaining fully positive that I will beat this. As far as I can see that’s the only way to fight this battle. Not long after the first set of bad news, I came down with a chest infection. Then a few days after the bad news about not being able to go on the first trial, I had several attacks (spread over four days) days of an excruciating stomach pain, lasting hours at a time – so bad that the first time I ended up going to A&E in an ambulance at 4am in the morning. The doctor in A&E, my GP and my gastro nurse put these stomach pains down to excess stress due to the cancer diagnosis.

While horrible at the time, these experiences were a clear demonstration and reminder of the effect that the mind and mental state can have on physical well being. If I get down and depressed my body will give me even more crap to deal with. So I figure I can turn this to my advantage – by keeping a positive attitude I minimise both mental and physical stress, hopefully minimise chemo side effects, and put myself in the best possible state of mind to beat this.

There is every reason to stay positive – there seems to be nothing to be gained by sinking into negative thoughts.

Right, I think I will end this post here. I have (believe it or not!) more to write. I haven’t yet touched on the amazing support and generosity we have received from family and friends in the last month.

But it’s late, and I’ve written a lot today, so I will continue tomorrow.

Bye for now.

P.S. This blog is also heavily inspired by a similar blog kept by a guy called Ezra in New York, who has been fighting colon cancer (hopefully, it looks successfully). It would be wrong of me not to credit him for his inspiration, so for anyone who wants to take a look, I have copied the link below. It’s a great read, and he is a wonderfully honest and funny writer (as well as good photographer, bike builder, and cook). So I would fully recommend it. You might also pick up some decent recipes! Thanks to Dan Morse for directing me to his blog.

Link > http://www.fastboycycles.com/teachingcancertocry/


Filed under Battle with Melanoma