Friday 1 October 2021

Bents Charity Butterfly Ball



Last month I had the enormous pleasure of attending the Bents Charity Butterfly Ball at the Lowery Hotel in Manchester. Solving Kids' Cancer UK are Bents Garden & Home (https://www.bents.co.uk) charity of the year, raising money in memory of Jossie Leaver (you can read about Jossie here). Jossie's parents, Cassie and Stewart, were in attendance along with some of the Solving Kids' Cancer UK team and we were joined by the parents of Lucy and Anya. The family of Reggie Hayes were also at the event (https://www.manchestereveningnews.co.uk/news/greater-manchester-news/dont-think-its-just-tummy-21293245). There was laughter and there were tears. It was a special evening, and in the aftermath of (hopefully) the worst of the pandemic felt even more so. The total amount raised in Jossie's honour far exceeded all expectations and I can only once again extend sincerest thanks to all those who attended and gave so generously to help children with neuroblastoma. Along with Stewart and Chief Executive Gail Jackson, I was asked to say a few words that are shared below.


"I would like to begin by adding my own personal thanks and that of my fellow Trustees to Bents, to everyone involved in organising tonight’s event at this wonderful venue, to all of you for coming, and especially to Cassie and Stewart for continuing to support the charity in Jossie’s memory and honour. It means a great deal to us.

 

I may be the Chair of Trustees of Solving Kids’ Cancer but the reason I stand here today is because I’m Adam’s Dad. My youngest son was just 5-years old when he was diagnosed with neuroblastoma in 2009.  Not uncommonly it took months for Adam to be diagnosed, by which time his entire body was riddled with cancer and he could no longer walk or sit down due to excruciating bone pain. In an instant our lives unravelled, never to be put back together again. Treatment spanning 4 years took us from London to Germany to America but had almost no impact on Adam’s disease and he died at our home in the summer of 2013 surrounded by the fiercest love and most crushing heartache imaginable.

 

I first became involved in Solving Kids’ Cancer in 2009 when the charity was nothing more than a lone part-time member of staff and a group of committed parents who had come together to help their children. Since then, the charity has gone on to support many children and families, with unrivalled care and compassion that combines personal experience with a deep knowledge of the neuroblastoma landscape. Families whose children are sadly no longer with us can at least take some comfort from knowing they did all they could, and without our help would have had even less precious time with their beautiful children. Without doubt our greatest achievement is that there are children alive today, growing up and free of neuroblastoma, who would not be here had this charity not helped and supported them to access the right treatments at the right time. No matter the odds, as parents we must believe that our son or daughter will be one of the lucky ones, we need that hope. Solving Kids’ Cancer gives parents that hope, and for some it has helped to turn that hope into the gift of life.

 

But we do not want to simply be a charity that only helps one child at a time. We always will of course, our door is permanently open to families in need. But we want all children and families to have the same hope and the same opportunities. When I joined our Board in 2016 there was only one charity in the UK that supported clinical research for children with neuroblastoma. Why? Because it’s extraordinarily costly, complicated and requires vast amounts of knowledge and effort. Actual trials in the hospital to provide access to new therapies that can cure more children. Other funding for laboratory research is important of course, but on its own it can achieve nothing. With that one charity, CRUK, allocating only a fraction of its total funding to all children’s cancers combined competition was fierce, and children with neuroblastoma had to get in line and wait their turn for access to new treatments and trials. But children with neuroblastoma don’t have time on their side and so we had this crazy notion that a small parent-led charity full of passionate and committed people could change how everything worked. We would dare to do what nobody else was and we would become the research champions that children with neuroblastoma in the UK so desperately needed.

 

Five years on from that crazy notion we have made incredible progress. We are not rich enough as a charity to be able to do anything by ourselves meaning we have had to work doubly hard to build collaborative funding partnerships to deliver what we know children need. Last year we awarded $1.4M to deliver the first ever joint clinical trial between America and Europe for children with neuroblastoma. We also became the principal UK funder of a Europe-wide clinical trial that will enrol all newly diagnosed children with high-risk neuroblastoma from every part of the UK. And this year we have committed £1M to bring an exciting new combination therapy into the clinic for children over the next 2-3 years, and a blood test to identify which children will benefit most from it. None of this would have been possible without friends and charity partners who have worked with us, and none of it would have been possible without Solving Kids’ Cancer’s leadership, vision, dedication, and commitment.

 

I could actually speak all night about this and happily will if anybody wants to come and find me later, but I need to wrap things up so will end by saying this. Being the beneficiary of tonight’s event is a massive honour for us at Solving Kids’ Cancer UK. Every penny you give this evening, everything you do to support us as Bent’s Charity of the Year and perhaps even beyond that, know that we really do care about children afflicted by this awful disease, and we really are doing everything we possibly can to help them and their families. We are making a difference and we are going to continue to make a difference. This is what I want each of you to take away from being here this evening."


Monday 3 February 2020

Forever Dad

Finally, I got to see you again.  It’s been far too long and I’ve missed you so much.  I’m sorry about being away.  I was excited, giddy for the imminent surprise reunion.  For you didn’t know I was coming back to see you.  As I came through the trees there you were, crazy fool, playing in a shallow pool of water.  Wearing that turquoise and purple hooped shirt, one of my absolute favourites.  Bent over at the waist, hands and top of your head submerged.  The times I’ve seen that pose before!  You lifted your head from the ground as if sensing a presence approaching, and turned towards me.  And as realisation dawned, with arms outstretched and face beaming with that most beautiful smile, I heard your voice once more.  “Dad!”, you exclaimed.

And you were gone again, and I was awake. A stream of steady tears running down my cheeks from where I’d been silently crying.  

So totally unexpected.  How long has it been?  I can’t even remember.  A gift from the mind to bring great joy and a stabbing blow to renew bitter sadness.  That shirt in photos that sit on the mantlepiece. That pose from the photo on the bookcase, taken on the beach in Cornwall. A scene constructed from bits of what’s left, of something that never was, as a beautiful and painful reminder of who I am.  A forever Dad of his forever much-loved little boy.  Until I see you next time, Adam. 

Monday 8 July 2019

LETTING GO …

I wrote this just a few days before Adam died. I never actually posted it at the time in its own right. Can't recall why, most likely because it was for me not anybody else. I'd forgotten I'd ever written until a friend reminded me by making reference to it a while back. I think about it often now when I see other parents faced with the same inevitability. It's almost impossible for me now to comprehend how this was ever my reality.

Monday 8th July 2013

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 precursor 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.

Monday 31 December 2018

A Better New Year ...


Whatever else 2019 is I hope that it brings with it good news, better times, and is kinder to many friends than 2018 has been. I hope more than anything else that it brings better health to those children in treatment, and continued good health to those in remission. To those parents like me whose children are no longer with them, I hope that 2019 has meaning and purpose, and brings with it times of pleasure and enjoyment.



I’ve been immersed in neuroblastoma research since late 2009 when it became apparent Adam's disease wasn't responding to any available treatment, and we fell off the rollercoaster of standard protocol. A lot has changed in that time, back then there was no treatment for relapsed or refractory neuroblastoma in the UK. Palliative chemotherapy and MIBG therapy. Now there are more trials, more options, treatment with curative intent - despite myths to the contrary perpetuating in some corners of the internet. However, too much has also remained the same. The outlook for children whose disease doesn’t respond to upfront chemotherapy remains very poor. As does that for children whose disease returns after responding and going into remission, with a general rule that the quicker it comes back the worse it is. For children who are free of disease at the end of all treatment the chance of a relapse remains far too great, though again not as high as some numbers quoted online. There may now be a strategy and more trials available for children who don't respond or relapse, but there are still yawning gaps in what is available versus what ought to be.

Remaining involved in research after Adam died was relatively easy once I stepped back into it after 18 months or so away from everything. It’s science, numbers, probabilities, statistics, anonymised cohorts and groups. The reality of each individual child always one-step removed.

Since joining the board of Solving Kids’ Cancer in 2016, first as Research Director/Trustee and now also Chair of Trustees, the hardest part for me by far has been re-engaging with parents and children going through what we once did. Following stories, becoming invested, waiting for updates, hoping for good news and fearing hearing the worst. It was actually a private connection that started me down such a road initially not the charity, but once I’d been forced to face certain truths all over again there could be no going back.

So it is that I find myself still immersed in the research world not only knowing all the truths and having lived most of the realities, but also desperately hoping for better for children whose names I’ve learned and whose stories I’ve come to follow. Now that research, anonymised though it might be in black and white, has an ever growing list of names, faces, little characters and their stories, that I can no longer “pretend” I’m not acutely aware of. Recently diagnosed, not responding to treatment, in remission, relapsed, on hospice care, dead. And it's a good thing that I can't hide anymore, because pretence and disassembling has no place here.

And what of 2019? I could say we have to do more, be better. Who doesn’t say that? We all do. We have to find better and kinder treatments for children with neuroblastoma. Of course that’s true. But I also think back to something Adam would say to me when I was spouting off about something or other … ‘blah, blah, blah, is all I heard’.

I have one over-arching goal for 2019 and it’s really very simple. To do more than anybody else. More on behalf of those names, faces, little characters and their stories, we’re following. More to honour the memory of all the many children whose lives have been claimed by this insidiously evil disease. More for those yet to be diagnosed, children we will learn of during the course of the next twelve months.

I want us to do things that aren’t being done, things that have never been done; that people either haven’t thought of or has been considered beyond the realms of possibility. I want us to work to help open more trials, providing more options in the UK for children with relapsed and refractory neuroblastoma; either directly through funding, or indirectly through advocacy, influencing and campaigning. I want us to work to be better at joining up what others are funding in terms of lab-based research, or drug development work, to ensure that the most promising agents are moved (translated) as quickly as possible through into clinical trials. I want us to develop more links internationally to make it easier to bring trials to the UK. I want us to work to help improve the standard of care that children with neuroblastoma receive across the UK. I want us to help build processes and infrastructure to be able to accurately provide information to parents and clinicians alike, to be able to monitor progress. Currently, nobody knows what the actual survival rates are for high-risk neuroblastoma in the UK, they’re all bundled up with low and intermediate risk disease in the National Cancer Registration and Analysis Service. Nor does anybody have a truly reliable estimate for the relapse rate for children who reach the end of treatment in the UK with no evidence of disease; everything that is known is based on multinational clinical trials and stored in trial-specific data repositories, and more often than not is reported ‘from the start of XY randomisation’.

Am I crazy? Possibly. Probably. Yet I honestly believe there's an opportunity to do this. The involvement and engagement of our Scientific Advisory Board is verging on unique, mutual trust and respect has been built with UK researchers and clinicians. Our special relationship with Solving Kids’ Cancer in New York, stronger ties with J-A-C-K, and evolving partnerships with other charities around the globe. The knowledge and dedication of our research personnel, heavily embedded as advocates in a growing number of groups and initiatives alongside clinicians and academic researchers. The final ingredient, of course, access to funds. I’m not going to lie nor skirt around the truth; I feel and will always feel for as long as it remains so, an uncomfortableness about our research programme being based largely on unused appeal funds. I know what that means in the majority of cases, I’ve been in the same situation myself. However, as of today that’s where we find ourselves, and we either attempt to make the most of it - for the benefit of children with neuroblastoma now and in the future, or we don’t. Cancer Research UK spent £2M on neuroblastoma last year. Label me whatever you like, but I still believe we can do more with less. It might also be an inconvenient truth to some, but nobody else is working primarily to help children fighting now, nor those diagnosed tomorrow in the literal sense. The quest for more effective and less toxic treatments, an endeavour to which I wholly subscribe and wish for us to contribute to, isn't doing that.

Ultimately, it won’t be for me to decide how well we do in 2019. However, I do promise anybody reading this that however far we do or don’t get, it will not be for lack of trying.

Whatever else 2019 is I hope that it brings with it good news, better times, and is kinder to many friends than 2018 has been. I hope more than anything else that it brings better health to those children in treatment, and continued good health to those in remission. To those like me whose children are no longer with them, I hope that 2019 has meaning and purpose, and brings with it at least moments of pleasure and enjoyment.
---

Tuesday 25 August 2015

22 August 2015

IMG 1660 1

The Garden 

So this is it then? The one day of glorious sunshine before the promised bad weather arrives to usher in the end of August, marking the beginning of the end of the summer holidays.

The forecast was right for today at least.

The sun is fiercely hot in an almost cloudless blue sky. Everything is quiet, and still. Once in a while a light breeze blows through, causing the trees to sway gently, but never sufficiently strong enough to disturb the tranquility.

I feel the heat of the sun on my back.

I’m standing in the garden, looking down towards the railway line. Not for any particular reason, this is just where I happen to be. I can’t recall when a train last passed by. There’s no traffic noise from nearby roads. No voices from neighbouring gardens. There are no foxes in attendance, no squirrels scurrying around in any trees. There is literally nothing upon which to focus my attention. And in this moment I’m struck by how utterly peaceful it is.

I take in the silence, and allow my eyes to close.

And I can see them, the two of them. There they are near the end of the garden, up there in the shady area away from the sunlight. The sprinkler is on, spraying out jets of water; first one way, and then the other. Back, and forth, back, and forth, back, and forth. Adam is screaming as the jets move through the vertical and begin to curve down towards him. He’s doing a weird dance, hopping from one leg to the other as though the ground beneath him is covered in hot coals. It isn’t of course, it’s just the excited anticipation of a young child at play. At the last second, just as the water is about to reach him and his screams are at their loudest, he jumps backwards out of the way, and runs round to the other side in readiness for a repeat performance.

And now Jessica is joining in. She’s motioning Adam to go closer, daring him to stand right next to the sprinkler. Now telling him he’s not allowed to move. This time he squeals in delight as the water passes over head, and there is no escaping it. He beckons his big sister to do the same on the other side.

Look at the two of them! Both wearing swimming goggles out in the garden; Adam in blue, Jessica in pink. Of course. Siblings, and best friends. Adam had been wearing a hat to protect his bare head from the sun, but that didn’t last long. Within seconds of getting into the paddling pool he’d adopted his favourite position; hands, feet and head all submerged. The hat now pegged to the clothes line, drying.

Adam wants the beach balls out. And the bags of multicoloured play balls. And the cricket bats. Now he wants to use the hose pipe to put some more water into the paddling pool. Apparently there’s not enough in there any more, and it’s not very fun!

Were it not for his bald head he’d look every part the normal healthy six-year-old boy. A white sun top hides the fact that his chest is wrapped in layers of cling film, beneath which lies the central venous catheter that delivers the chemotherapy direct into his blood system. It doesn’t appear to be bothering him at all though. The worst part was getting him ready, when all he wanted to do was run off and play.

He looks especially beautiful today if that’s even possible! There are beads of water on his scalp and face, that are glistening in the sunlight.

And then, it changes. The paddling pool and sprinkler have disappeared. There’s a badminton net across the garden. We’re playing doubles. Adam’s hand-eye co-ordination is pretty good; perhaps it was the tennis lessons he had before he fell ill?

He’s had enough for the moment. Time to take a drink, and seek respite on the swing seat. He’s going to be the referee. Oh it’s like that is it? Giving the other team an unfair advantage so that Dad loses every time.

And then, it’s gone. I’m back in the here and now. I’m thinking about what I was just thinking about.

Memories.

Only it’s more than that. Everybody has memories. Life moves forward, and we make new memories. Old ones fade, become less significant.

We live in the present.

Except part of me will always be anchored in the past. There are no new memories of Adam to be made. The selection, good and bad, is finite. And it must be treasured, for to forget is a betrayal.

Today reminded me of that. It was vivid, it was almost real. For a few cherished moments of complete serenity I was living in the past. I hope it’s not too long before I can go back there again.


September is Childhood Cancer Awareness month. 

Tuesday 28 April 2015

2015 Virgin Money London Marathon ...

Don’t do anything different on race day. Simple enough instructions.

The pre-race plan was to stay with friends on Saturday night, and travel into London from there the following morning. Two-thirds of the way round the M25 I realised I had forgotten to pack anything to eat for breakfast. A frantic Google search ensued; the nearest Waitrose (the only supermarket chain that I know stocks my particular brand of porridge) closed at 8pm. Google Maps estimated we’d just make it. At 7:56pm we pulled up at the front door and I dashed inside. A second unscheduled stop, this time to Tesco to buy the right milk to go with the right porridge, and serenity was restored. You’re now thinking I’m a fussy eater, but I’m really not. And I’m normally very well organised too.

On Sunday morning we travelled up to Lewisham by train. At the station there were lots of people doing as the race day instructions had told them; getting off the train and switching platforms for the DLR to Greenwich, getting off the DLR and switching platforms for the train to Blackheath. We left the station and had a leisurely walk up the hill to Greenwich Park, it took about fifteen minutes. You win some, you lose some.

Greenwich Park was awash with runners. I dropped my kit bag off at the lorries early as there was nothing in it I needed. It wasn’t as if I’d remembered to take tracksuit bottoms to keep my legs warm. At least I’d packed my running gear, and a throwaway jumper to wear pre-race. I then located the entrance to my start pen (4), and plonked myself down on a park bench midway between it and the male urinals. I was feeling quite relaxed, watching the world go by, chatting with a couple of fellow bench warmers. The start pens began filling about 45 minutes before start time; with people clearly determined to spend as long as possible on their feet. Then there were the inevitable late comers, scurrying across Greenwich Park to deposit their bags before wagons rolled.

With 15 or so minutes to go I made my second, and final, use of the toilet facilities and headed to my pen. Soon we were counting down to the start, and within a few minutes of the gun going off we were across the line ourselves. My London Marathon had begun! I started my watch as I passed over the timing mats. I should have checked the official clock too, but it didn’t occur to me at the time that it might be important later.

Of much of the race itself I have only limited recollections in truth; less specifics and more a general sense of the occasion.

People had told me beforehand not to make the (potentially catastrophic) mistake of going out too fast in the first few miles. The course profile on Strava shows miles 3 and 4 as being downhill, and I guess this must be so over the piece. It didn’t seem that way to me when I was running it though. The early miles are residential, and so spectators are often spread out. Mostly people from local communities gathered together, or stood on the steps of their homes, or leaning out of terraced windows. Or, in one particularly memorable case, positioned on the balcony of their home with two massive speakers, blasting out Queen’s Don’t Stop Me Now at full volume.

This was my first marathon, and I’d trained hard for it. I’d followed a plan since the beginning of the year, designed around a 3 hours 30 minute finish time. Training had gone pretty much as well as it could have, a few niggles but no injuries. Managing to hit the targets in the plan left me with anticipated fatigue, but hadn’t completely wiped me out. By the time I reached the 3-week taper phase I’d completed four 20 mile long runs, including two on consecutive weekends.

My taper was awful for the first fortnight; I felt lethargic, my legs were heavy. My asthma flared up as the weather changed, and that coupled, I think, with some anxiety about running my first marathon and all that it meant, left me tight-chested for much of the time. I eased down on the speed work, dropping some interval repeats that I felt were becoming a little too much for me. During the final week the fog lifted, I felt more relaxed, and at ease. My only remaining concern was if it was too hot on race day — the heat, my asthma, and running, do not play well together. Checking the forecast during that week it didn’t seem that I had much to worry about; rain in varying degrees was forecast for most of the day.

As it turned out there was no rain at all. Conditions were near perfect from start to finish, cool and cloudy.

I didn’t settle on a pacing strategy for the race until it had already begun. I realised only the day before that it didn’t actually matter what time I did — so what if the wheels came off later in the race? And thus there was no need to be deliberately conservative and aim for 3:45, which had been my goal for so long.

I started off just running comfortably ‘to feel’; making sure my breathing was steady, my legs felt good. That I could easily hold a conversation — if I’d had anybody to hold a conversation with. I checked my watch intermittently during the first few miles. Not to see whether I was on pace, but to check what pace I was running at, and for reassurance that I wasn't going too fast. I was settled at around 5 to 10 seconds above 8 minute mile pace.

Every now and again for the first couple of miles I’d look on the floor for this ‘thin blue line’ that denotes the exact 26.2 mile distance, and shortest route around the course. Being on the red route there isn’t one, I suppose. Not until it merges with the Blue/Green start. There was a left turn coming up ahead, with a constant stream of runners passing by from right to left. As we filtered round and joined them, a chorus of disapproving boos rang out from the other side of the road! The two groups ran alongside each other for a while before merging together as one. And behold, as if by magic, a thin intermittent blue line appeared.

I didn’t notice any landmarks as such until the ground changed beneath me, and we were running on a kind of paved area. We looped round on a fairly sharp left-hand bend. As we came out of the turn I looked up and left, “Oh wow, that’s the Cutty Sark right next to me. I remember this bit from watching on television” I thought.

Generally speaking, at the pace I was running, and the position I started from, there was no great problem with not having enough space to run in. I’d been advised not to snake all over the road weaving in and out of people, but as it turned out there was no great need to. Once in a while I’d find myself stuck behind people running together, and would have to either run round or between them. A few times I made the mistake of getting myself caught over towards the side as we ran through a water or lucozade station - even when I wasn’t taking anything on board. That’s one time when people do suddenly cut across you and cause you to break stride, or pull up abruptly. Another is when they realise they’ve run past their supporters and decide to turn round and go back to them. You also have to be careful of bottles dropped in the middle of the road — which I assume is a result of selfish people not giving a damn about the rest of us out there. I mean there’s plenty of opportunity to discard them to one side.

Around mile 9 I saw a Run To Live t-shirt up ahead, and as I got closer recognised it was Sara. We exchanged pleasantries — she was looking as good as I felt.

As I approached mile 10 I decided to see how I was doing time-wise. I looked at my watch and worked out that I must have crossed the start line around four minutes after gun time. My average pace was 8 minutes and some seconds. I didn’t know exactly because when you’re out there you are running more than the actual distance. There’s GPS inexactness going on, and there’s also that magical thin blue line. One minute you’re tracking it like a guided missile, and the next you lift your head or your attention turns elsewhere, and when you look back down it’s shifted right over to the other side of the road. I was still feeling very relaxed and comfortable, so I thought I’d try to up my speed a little; get my splits, at least according to my watch, under 8 minute mile pace. I still wasn’t looking for any particular time. At the pace I was going I was heading for a three hours and thirty something minutes finish time. If I could maintain it.

I knew our charity supporters, and hopefully my family, would be around mile 13, just after Tower Bridge. That was quite a memorable moment running across the river, looking up at this amazing structure above me. As we turned right I saw a couple of the elites scorch past on the other side of the road. I saw the flags of Rays of Sunshine Children’s Charity, and as I ran past I saw Alison waving to me — the only person I saw spectating that I knew the whole way round.

I have to confess I wasn’t much of a tourist. I didn’t exactly take in the sights. I recall the Shard standing tall way up ahead of me at one point. And running through Canary Wharf was quite memorable too — not only the imposing buildings, but also the closed-in atmosphere as we ran between them, lined with noisy spectators.

My nutrition strategy was to take on a gel somewhere around every 4 miles, or 30 minutes. I was carrying six, but I’ve found that after five I just struggle with any more; so had Shot Bloks to use for the remainder of the race. I probably took water bottles a couple of times in the first half of the race, and once or twice in the second half. Two or three swigs and discard (sorry Mum, I know it’s a waste). I avoided the Lucozade Sport like the plague — even though I had practised drinking it during training. At half distance I took a water bottle and added an electrolyte tablet. I carried that for a while, and probably drunk half of it. I’m not sure whether I needed it, but psychologically it did me good if nothing else. I’d never completed a marathon before. I was worried about ‘the wall’. I didn’t know what to expect later in the race, when I got to distances I’d never been to before. If something happened at that point it’d be too late.

The next part of the race, up until 40 km was really about ticking off the miles. Running from mile marker, to mile marker. And I even found having the metric 5 km markers at certain points in between helped me. Each one was a step closer to the finish. I still felt good, and I was just running quite happily from checkpoint to checkpoint. The atmosphere was amazing. You’d make a turn and there'd be a sudden barrage of cheers, a band playing, or drums beating — I remember drumming on the roundabout beneath a flyover. That was loud. Now and again the atmosphere, the crowd, the backdrop, would literally give me goosebumps, and make the hairs on the back of my neck stick up.

At around fifteen miles the outsides of my thighs began to hurt. I thought it unusual, in all my training runs, including the 20 milers, I’d never experienced it before. The fact it was bilateral probably helped, it reassured me it wasn’t an injury. And there wasn’t much I could do about it in any case, so I didn’t start stressing too much. As the race progressed the muscles became progressively more sore; but it was bearable, and never interfered with my running form.

A few times after passing mile 20 I got a little carried away, and started thinking about the finish. Only 10 km to go! Only 5 miles to go! I can run that easily! I’ve done it, I’ve run a marathon! Each time I reigned it in fairly quickly. Now was not the time to be getting carried away, or taking anything for granted — I was running farther than I’d ever run before. Just keep concentrated, keep knocking out the miles, Nick. The finish will come soon enough.

For a while I kept wondering if the mythical beast that is ‘the wall’ was up ahead. No, not between miles 20 and 21. Not between 21 and 22 either. I don’t think there was an actual realisation that I wasn’t going to hit it, more that it just faded out of my consciousness.

As I passed the 40 km point I checked the official time clock. 03:24 and change. Adjusting for what it took me to cross the start line that was 03:20, with 2 km to go. Or so I thought. A marathon is 26 miles 385 yards, which I knew. Or 42.195 km, which I did not. In my head I was thinking — and this was the first point during the day that I had — I could get under 3 hours 30 minutes here. 10 minutes for 2 km, 5 minutes per km, 8 minutes per mile. Just keep running. However, that failed to take into account those additional 195 metres.

We passed in front of Big Ben and I realised there wasn’t long left. I started to well up, for the first time in the day. Not a good idea. Not conducive to nice, steady breathing. Put that on hold until later.

As I came down Birdcage Walk, and passed the large red 800m to go sign, I still felt strong. I thought I’d make a run for home. That didn’t last long. I was sure the next large red box up ahead must be 400m to go … you’ve got to be kidding me … 600m to go. I came round the bend and passed beneath the 385 yards to go banner. Then I was on The Mall. I could see the finish … and the clock. I started to increase my pace. And then I started to sprint. This is crazy. I’m sprinting at the end of a marathon. I vividly remember the clock ticking round to 03:33:33. I had no idea how far I had left to go. I had no idea if I could get there before it reached 03:34:00. To hell with it, just give it everything you’ve got. Like the last interval of a speed session — leave it all out there.

As I got closer I realised I might just do it. I might just do it.

I think I’m going to do it. I think I’m going to do it.

I’m going to do it. I’m going to do it.

Oh my god. I did it! I did it!

Well, I think I did it. Did I do it? Who knows, all my timings were approximate anyway.

Whatever, I’d crossed the line. I’d finished. I’d run a marathon. I’d run the London Marathon. I was breathing so hard, and the sprint to the line left me feeling queasy. I couldn’t quite believe I had actually finished. Something that I had always wanted to do. Something that events of recent years had left me needing to do.

As we funnelled through I collected my medal. It was an emotional moment for me. I stopped for the official photo, collected my goody bag, and finisher’s t-shirt. As I walked down the line of lorries to retrieve my kit bag my chest was tight; from the exertion of finishing, from the emotion of finishing. But it soon eased. What an amazing day. What an amazing experience. I’d done it, an ambition for as long as I could remember. I’d completed the London Marathon.

I made my way through to the runners meeting point. And only then did I discover what my actual time was … 3 hours, 29 minutes and 55 seconds. I’d started at 10:14:05, and crossed the finish line at precisely 13:44:00. It was the perfect end to a perfect race.

To say I’m chuffed is an understatement. I still can’t quite believe how perfectly things went. But for me this was always more than just a running race. It turned out to be an experience that will never be surpassed.

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.