Sunday, 21 December 2014

London, Here I Come

I was good at most sports at school, but was never very good at any. I made most of the school teams, but was never the star player. I was good enough at running to make the cross country team each year; but when competing against other schools was only ever an also-ran. A born athlete I most certainly am not.

Looking back on my adult life I've always been an occasional runner. I'd run for spells, most usually during the summer when the weather was better and the days were longer. Come the colder months it'd all come grinding to a natural halt; insufficiently motivated, or committed, I suppose. I've also had lengthy periods, lasting numbers of years, when the only running I ever did involved attempting to catch a train.

In 2007 I saw a physiotherapist after having problems with my right leg, affecting range of movement, and causing constant low-level pain that had started to become debilitating. It was during this period that I began running again, which seemed to ease the discomfort. Apparently one of my muscles, having been neglected for so long, had gone on strike, and a co-worker was doing two jobs to compensate. The more I ran (and the more the physio stuck needles into me) the better my leg felt. When the nights grew shorter I invested in some cold weather running gear. I had my gait analysed on a treadmill and bought proper running shoes. And I embarked on my first ever winter of running.

In 2008 my running became more serious, and I started doing more events. For as long as I can remember I've always wanted to run the London Marathon. And I mean run, not simply get round (which is fine, just not for me). Sometime during 2008 I realised for the first time that I might actually be able to do it. I applied for a ballot place. And received my first rejection (of six and counting). Undeterred, and helped by six months off work whilst between jobs, I started running farther and faster.

And then, the following summer my youngest child, Adam, fell ill. In July 2009 he was diagnosed with cancer; a paediatric cancer called neuroblastoma, of which none of us had ever heard. By the time he became symptomatic it had already spread throughout his body. Despite the prospect of a year undergoing the most brutal and intensive of treatment regimens, his chances of survival were a mere 30%. Running came to an abrupt and complete halt. Marathon ambitions became the furthest thing from my mind.

Adam's disease did not respond well to treatment, but at least it stabilised and stopped spreading. With no further treatments available in the UK we spent the second half of 2011 taking Adam back-and-forth to a small university town in North East Germany. I started running again - well there was nothing else to do there. And it was flat. Like being back at home in Norfolk. Flat. And a bit dull. Starting again was tough, but also quite therapeutic. I'd think a lot about what was going on during those runs, get my head straight. Once more my mind began flirting with marathon thoughts. I had another London ballot rejection (the third of six and counting). And despite always saying my first (and possibly only) marathon would be London I duly signed up to do Edinburgh the following May instead.

Training had been going well. I'd recently run the Surrey Spitfire; at 20 miles it was my longest event thus far. I was starting once more to really believe I was capable. Then on Easter Sunday, whilst out on another long training run, I broke down. Luckily for me at the farthest point from home, with no phone and no money. I couldn't put my foot down without pain shooting up the outside of my lower leg. I managed to walk for a bit, but soon even that became painful. I approached a lady pulling into her driveway and asked if I could use her phone … she told me she'd fetch her husband. Clearly I cut a more menacing figure in shorts and running vest than I had hitherto realised! I called Alison to come and collect me, my marathon dream over once more. A fibular stress fracture would render me inactive for the next couple of months.

In mid-2012 Adam's disease began to progress, and from there things became steadily worse. Any thoughts of getting back to running after my injury quickly ceased. We managed his pain, and we took him to America to one of the leading hospitals, for experimental treatments not available in the UK. We lived out of a suitcase, we slept badly, we ate badly. We were emotional wrecks, and our stress levels were permanently high. I went running once, in Michigan over the winter. It was bitterly cold. I ran/walked about two miles, then spent the rest of the day coughing and wheezing from the freezing air that had invaded my lungs.

In July 2013, four years after he was diagnosed, Adam died at home in our arms. He was just nine years old. Wed known for months that he was dying, but the loss when it happened was so much worse than I could have ever possibly imagined. For me lacing up my shoes and hitting the road was one of the most important things that helped me cope. I say 'hitting'; the first time I went out I managed less than a mile before I had to stop and walk. There was something slightly demoralising about how much worse I had gotten, about being back to square one; except when stacked up against the fact my child had just died, then it didn't matter a jot. The morning after Adam's funeral I completed my first, albeit very slow, non-stop 5K in more than a year. Including shouting every expletive imaginable at myself whilst trying to make it up a (very short but fairly steep) hill past some allotments. It's hard to convey the out-sized sense of joy I felt at achieving this particular feat on this particular day.

And so my running continued. After going back to work I'd return home some days and be full of anger and hatred, and generally unpleasant to be around. By going for a run I'd get most of it out of my system, and come back in a much more agreeable mood. The mileage began to steadily increase again. Worried about my stress fracture I started cycling and swimming to cross train, which almost inevitably led me to triathlon. At school I was a rubbish swimmer and hadn't swum, except messing about on holiday, for over 25 years. I've been at it now for just over a year and I'm still distinctly average, but that's still a lot better than I ever thought I’d be.

When the first anniversary of Adam's death came round, and the dark clouds descended, I threw myself into exercise. An olympic distance triathlon at Eton Dorney, the London Triathlon (sprint distance), the British London 10K, Thunder Run 24, and Ride London 100. All in the space of four weeks. It was my way of coping. I'd have done more if I could have gotten away with it.

And so to my date with destiny and the London Marathon. In October I was notified of my latest ballot rejection (number six and counting in case you were wondering). Having said I'd only do it if I got in through the ballot, because then it was meant to be, I simply couldn't accept not getting in this time round. And so next April I will be lining up several miles back from the start line proudly wearing the vest of Rays of Sunshine Children's Charity. Since Adam died we have been working our way through all the charities and organisations that helped him, and us, throughout his illness. Trying to give something back. RoS are a wish charity who arranged our final ever day out as a family two months before Adam’s death, at Harry Potter Studio Tour. I've not watched the video they shot yet, it's still too painful to bear. However, on the afternoon before Adam's death he and I sat on the bed together and looked through the photos from that day. It's a memory that will live in my heart forever.

I hope to raise as much money as possible for this wonderful charity. And I have also set myself a target finish time of 3 hours 45 minutes. A tough ask for a first-timer, but I think it’s achievable if everything goes in my favour. In any case I’m going to give it my absolute best. For myself, and for my little boy. 

Whenever I ran an event I'd always have the same conversation with Adam when I came home:

"Did you win, Dad?"

"No, Adam"

"Where did you come then?"

"Seven hundred and sixty eighth" (or whatever it was).

"You're rubbish!"

He still took my finishers medal each time though, and kept it as a souvenir. They all hang on his bed, including those I've gained since he died. Adding a VLM finishers medal would just about complete the collection I think. And in the meantime all that running (and cycling and swimming) will continue to help keep me on an even keel, and be my release whenever the darkness descends.


Please visit my JustGiving page at http://www.justgiving.com/vlm4adam, or by clicking on the image below.

Friday, 11 July 2014

Twelve Months On …

Two pairs of slippers sit alone beside the shoe rack in the hall, unworn since the final blood transfusion one week before he left us. During those last few months the brown moccasin pair would get such an outing each week; along with his grey Albion jacket, worn over pyjamas he otherwise lived in. The second pair, closed-toe, open-back, soft and spongy, he wore in America, when we travelled seeking hope one more time; only to return finally defeated and bereft. The football pattern that adorns them would elicit comments and compliments from hospital staff, as he sat in his over-sized pushchair, en-route from hospitality house to clinic.

The jacket, the one he would wear on ever less frequent ventures outside, still hangs on its appointed hook in the under-stairs cupboard. Beneath all the others that have been in and out, taken down and hung up again, over the past twelve months. Much like his blue coat that sits lonely on its peg in the side passage. We bought it in Germany, during the six months that we travelled back-and-forth for treatment. Preparation for harsh winter weather that never materialised. Even so, he wore that coat a lot; it was a good coat. It still is; just destined never again to fulfil the purpose for which it was bought.

Toys, books, games, teddies, consoles, collections of stuff; all as he left them. His key rings; some bought, others acquired from friends and relatives, or sent to him by complete strangers through the Post Pals charity. Sorted one key ring at a time, a few days before he passed, into separate boxes for 'favourites', and 'the rest'. There they remain; just as he sorted them, just as he wanted them.

His bedrooms remain dormant, and mostly untouched.

Bedrooms, plural; for he has two. In the first is a cabin bed with built-in drawers and desk, slept in throughout the time he remained stable. For many months, during which he even joyously returned to school, that we hoped would extend to many more beyond; a hope torn apart as his disease became active again. Thrusting us back into a world of torment.

The second a spare room into which he moved, when his physical condition rendered a cabin bed unsuitable. In there is a single, wooden frame, low to the floor. The first full-size bed bought for our eldest, and which through the years all three of our children have claimed as their own. Whilst the room may once have been spare, it most certainly became his. Small and cosy, decorated in his chosen hues of blue and green; that still adorn its walls today, and which must never be changed.

As time passed, and the cancer took hold, he moved again; sleeping in our bed whilst I took his. In the week of his death a special mattress was delivered, designed to prevent worsening of newly-formed bed sores. It was uncomfortable, made him hot; he was unable to sleep. In the aftermath of a terrible, restless, night, he asked if he could try sleeping elsewhere. We carried him, tired and frail, from our room to his; set him down gently into the bed. His bed.

And there he slept, peacefully, for one final time. Our nine-year-old son.

Wednesday, 31 July 2013

In celebration of the life of ...

One of the most undecided things about yesterday's service was what to call it. It wasn't a funeral and neither was it a celebration. In the end, and rather at the last minute, we decided the Order of Service should carry the title 'A celebration of the life of'. It wasn't until after the event that I finally realised what the service actually was, and that there was no conflict in it; a simultaneous celebration of Adam's life and mourning of his death. Mind you, that would have been a rather pompous, and generally rubbish, title to put on an Order of Service.

For anybody who doesn't follow Adam's Appeal on Facebook or Twitter, this is his Chapel Service …

Front

Adam OoS 2

Reflections

Hey Adam,

After two weeks of not being able to think of what to say to everybody, all of a sudden it dawned on me. It’s not everybody I should be speaking to, it’s you.

I’m very proud of you son. Not for any extraordinary feat, not for achieving this, or winning that. I’m simply proud of YOU. My polite, courteous, kind, caring, loving, smiling, funny, happy, little boy. An ordinary child, with an ordinary child’s outlook on life, despite facing things no child should have to face.

You had every right to bemoan your lot Adam, and yet in four years I could count on the fingers of one hand the times you did so. It would’ve been understandable if you’d grown to hate everything you had to go through, and everyone who put you through it, and yet you never let hate enter your heart. You never envied, you never begrudged, and you never sought pity. You lived each day as best you could; and if today was a rubbish day you didn’t dwell on it, just hoped for better tomorrow instead.

Hospitals, nurses, drugs, scans, transfusions, pokes and prods ... they were a sideshow. Adam’s Appeal and publicity, that was slightly bemusing. Home, family, friends, and having fun that was the important stuff. Remember when we took you to Germany for treatment Adam? You used to cry as we drove away from the house because you were leaving Jake and Jess. We had to refer to them as Thing1 and Thing2 so you didn’t get to hear their names. More recently when you were in America, it was never long before you were ready to return home again.

Things didn’t work out as we’d hoped little man, but know that we always did the best we could, and we always did it out of love.

I knew you Adam. I had the privilege of being your Dad. Others only got glimpses, and some saw only that which I shared with them. Today is your day, and you should take centre stage. So this is my tribute to you - I hope you approve.

Love you son. Always.

Adam OoS 3

Adam OoS 4

Our brother … forever

Your beautiful smile
could light up the room,
like a shining beacon,
the sun, and the moon.

Your infectious giggle
and your cheeky grin.
Your tongue poking out
… well where do I begin?

Loving and caring,
courageous and brave.
You taught us all much
about how to behave.

Gadgets, light sabres,
morphers and guns,
you sure were a boy
who liked to have fun.

That fun and that laughter,
those games that we played.
I really must tell you,
I wish you had stayed.

But you'll be in our hearts,
we are birds of a feather.
Siblings together,
our brother …. forever.

They say there is a reason

They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,
For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,
We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to be without.

Adam OoS 5

Adam OoS 6

Adam OoS 7

As I've said to a few people, yesterday was not a day that any parent can look forward to. But thanks to the people who helped put together the service, and those who came and shared it with us, we will always be able to look back on the day with satisfaction and contentment knowing we did it right for our son.

Here is the message I posted on Facebook last night.


Thank you to everybody who came today as we said goodbye to Adam. And thanks for all the messages of support that we have received. It was such a hard day, the like of which none of us have ever experienced before, nor ever wish to again. I would have liked to have gotten all my words out without breaking down, but I always knew that part was likely to get me and having written it I couldn't leave it out.

The day though hard was also wonderful in its own way. The tone was perfect, just as we had wanted it, and everybody who participated made it what it was.

To Roz and the choir for their beautiful rendition of "I wish I knew ..." and for carrying us all in the hymns, Adam and Hels for the perfect music to accompany us in and out, Lisa for preparing the order of service, Martin Ellis for playing the chapel organ, Emily for delivering Alison's chosen reading in her stead. Sincerest thanks to you all.

Thank you to Canon Esdaile who has been brilliant throughout this difficult process, helping us plan the order of service and conducting the services at the Chapel and Crematorium.

Thank you to Epsom College for not only granting us our wish to use the Chapel for Adam's service, but for providing refreshments afterwards in the College and for giving us their total support throughout.

To my wonderful daughter Jess who somehow transformed herself from an emotional wreck to a tower of strength in order to deliver her reading ... I have a heart bursting with pride. As we left the Chapel I said to her how did you do that? She gave me a nod and said cheekily 'it's a gift'. Well it's definitely something special that's for sure.

And to my little boy whose life we celebrated and death we simultaneously mourned today ... thank you for the love that will live on forever in our hearts. x"


Sweet dreams little man. Daddy loves you so much. Always and forever. x

Wednesday, 24 July 2013

Service of Thanksgiving ...

DSC 0690  1

A memorial service for Adam will be held at 11am on Tuesday 30th July in the Chapel of St Luke within the grounds of Epsom College, followed by a private cremation for family only at Randall's Park, Leatherhead.

All are welcome to attend the Chapel service. There is no preferred dress-code.

Refreshments will be served in the main school following the Chapel service.

We are requesting no flowers. Anybody wishing to make a donation in memory of Adam, or in lieu of flowers, is asked to do so in favour of paedeatric services (Casey and Ebbisham wards, and the community care team) at Epsom Hospital who looked after Adam with such care and diligence throughout the course of his illness.

A retiring collection will be held after the Chapel service.

Cheques should be made payable to 'Epsom and St Helier University Hospitals NHS Trust' and may be sent c/o W A Truelove & Son, 14/18 Church Road, Epsom, Surrey, KT17 4AB.

An online giving page has also been setup at http://uk.virginmoneygiving.com/adamb.

In view of the ongoing roadworks near the College, those attending the service are advised to approach from Epsom town centre and use the main entrance, or from Epsom Downs and use the Sports Hall entrance on Longdown Lane South.

I can't imagine ...

They are words you see and hear quite a lot after your child dies, in cards of condolence and messages of sympathy. Words that have a certain appropriateness, to convey how unfathomable it all is.

"I can't imagine …".

To those who have used such a phrase, I can confirm what you already knew.

I know this to be true because I myself could never have imagined. I never understood. For as long as I stood on the precipice, knowing each day was a day closer to losing my precious child, I had no idea it would feel like this when Adam was actually gone. I couldn't imagine for one reason alone — he was still with me. You can try to imagine all you like — at times you cannot stop yourself in fact. You can have dark thoughts in your head; they may consume you at night as you drift into sleep, and still be there when you wake in the morning. But these are your fears, they are not your reality. As much as it feels real at the time, it's not. Not when your child is still there, to talk to, to touch, to love, to adore. Not when your child is still there for you to wake up to.

When you know that you have kissed them goodnight for the last time; will never again hear their voice, feel their touch, hold their hand, smell their essence. When all you have left to look at are photographs. When all you have left to talk to is an empty space, or a once treasured something. When there is no more making new memories, only hoping you won't forget old ones. When you think of things you wish you'd done, or said, or taken care of — stupid little things much of the time — and know you're never going to have that chance. When nothing you can do or say can ever change anything. When you no longer have fears only absolutes. When there is nothing left to imagine. When this is reality, from now until your own dying day. Only then do you understand.

Thursday, 11 July 2013

The End ...

This morning at five minutes after nine, lying in our bed at home as we held his hand, stroked his hair, and told him we loved him, our beautiful little boy Adam took his last breath and left this world. He will live on forever in our hearts.

DSC 0690  1

I wrote the following a few days ago, but never got round to publishing it …

Letting go …

Monday 8th July

For reasons I do not fully understand an odd sense of calm has descended upon me these past few days. I think perhaps I have finally come to realise, understand, and begin to accept.

There is a time to fight, and we did that, for as long and as hard as we could; perhaps too long though I don't believe so.

There is a time to hold on, to focus on taking out of each day whatever you can within the limits of what circumstances will allow. We've been there a couple of times. After Adam completed immunotherapy, before a single suspicious lymph node was revealed to be the pre-cursor to full-blown progression. And just recently whilst Adam has been comfortable at home, and we've been able to enjoy simply being in his company each day, overlaid with occasional special moments like our trip to Harry Potter Studios, and the school Tombola.

And then there is a time to let go … and now is that time.

It may seem a bizarre thing to say, but I actually feel fortunate right now. In the context of what we are facing to have had the time that we have, over two months of it, with Adam free of pain, lucid and coherent, has been more than we could have dared hope for. That's not to say it's any easier, or less traumatic, or our hearts are any less broken, or there isn't a constant undercurrent of tears in my eyes ready to burst forth at any given moment. But we have been afforded something that many are not, and as a consequence I've gained a perspective that I otherwise wouldn't have.

We have decided the time is right to stop taking Adam to hospital to receive blood transfusions. It's better that he stays at home where he is comfortable, and we continue to care for him as best we are able. Whilst I have no idea precisely what the coming days will hold, my one fervent wish is for Adam to remain comfortable and without pain.

From the very start of this journey, Alison and I have always done what we believed was the right thing for Adam, for the right reasons. So I can't now allow myself to be the cause of unnecessary suffering through my own selfish (though perfectly natural) desire for Adam to remain with us for as long as possible. Letting go, not giving up. Letting go … the easiest thing of all … and the hardest thing of all.

Tuesday, 2 July 2013

Return of the Tombola ...

IMG 0021 1 Well, I don't entirely know what to say other than an enormous thank you from the bottom of my heart to all you lovely people who ensured that, as a (very welcome) new addition for 2013, there would be a jar tombola at the junior school's celebration evening.

When I woke Adam up just after 4pm and asked him whether he wanted to go (having changed his mind several times during the course of the day), he said he was too tired and didn't think he would. But it was a rather equivocal no, and so me being me, I gave him a gentle nudge … and he changed his mind again! We agreed a plan; drive up, get there early, spend a couple of quid, make sure he won something, and be home again in half-an-hour …

… or not. We parked his chair in the middle of the stall, and there he remained for the next hour. Studiously examining the jars until he found one (or several) that he liked, then draining the contents of my wallet until he'd picked out enough winning tickets to add them to his collection.

I don't know how many sweets he'll actually eat, though I'd wager not that many. I don't even know how many jars he'll open. We could end up spending longer tomorrow sorting sweets than we did today winning them. Equally they could remain untouched in the bag that we brought them home in.

It doesn't matter.

For two hours today Adam was joining in (well actually he was hogging most of the stall), and having fun. In all likelihood he would have refused to go had he known it was instigated for his benefit.

So thank you friends, know that you did a lovely thing. It's too hard for me to describe what it was like to see Adam go along today and really enjoy himself. I can't lie to you and say my heart was full of joy, how can it ever be? But that's alright, it wasn't about me. I can say that today I have experienced something other than sadness and anger. I was happy for Adam, and I was happy for you all too.

And now I must go and wipe my eyes — I seem to have a touch of hayfever all of a sudden.