THE GOSPEL ACCORDING TO ROBBIE WILLIAMS

In truth I’ve hummed and haahed about writing this and given it a lot of thought – it may be a tad painful for me and those close to me to think about. But having weighed everything up and always prided myself on saying it as it is, here goes I’ll give it a bash…..

I was asked a couple of times last Saturday at the Raffle of Excellence if I was scared?  This admittedly was by younger friends, who are naturally inquisitive and although I burbled some bravado(ish) answer, it has got me thinking in the days since.

And I’ve come to the conclusion that deep down, tucked away from everything, I must be.  I can’t see how I couldn’t be to be honest.

The big question though is; Am I sacred of actually drawing my last breath per se? Or the consequences of doing so?  The two things are distinctly different.  Robbie Williams that sings “I’m not scared of dying I just don’t want to” and I reckon that sums the situation up perfectly…..

……probably.

I can honestly state that I’ve always been proud of my family, but never more so than this exact moment in time.

Penny has risen to the challenge magnificently.  She now does just about everything that needs doing – my god she even passed her driving test in 5 weeks so that we could remain mobile.  I’ve always known she had an inner strength (she’d have to have being married to me for 28 years!) but nowhere near what has emerged since this dreadful disease reared its ugly head.

Joe would be the first to admit that he was just kind of drifting along but has sorted his life out and with Mel, his partner, has turned out to be the most fantastic parents to our grandson, Eli – who in turn is without doubt the happiest child I’ve ever seen.

And Amy, well she appears to have finally found her true vocation and now has a job whereby she makes a difference to the world – the kids she works with are right up there with those that need the greatest help society can offer but ironically has little to give to.  She’s also weeks away from getting married – who’d have thought it, my little Amy, eh?

And I’m going miss all that follows.

The feeling that I’m letting everyone down is inescapable.

I shouldn’t be putting my parents through this – not at this stage of their lives, they have their own issues to deal with – and are doing so without overly troubling me, I know that.

Brother and Sister have remained more positive than I could ever have hoped for but once more they shouldn’t have to go through this. And the same is true for the rest of my relatives and friends who have rallied round.

Finally, I couldn’t have wished for more from the Medical  profession.  They have thrown everything they can at my cancer and still it hasn’t been enough.  So many people have done all that they can for me and I hate to think of the total cost – Ipi, alone, is about £29k a bag and I had 4 of them.

I know it isn’t my fault and there is little, or nothing, I can do, other than accept the inevitable but the feeling of guilt still weighs heavy on my shoulders.

Then there’s the everyday things;

The drugs have wrecked my teeth – is it worth the investment to put that right?

Will the new garden ever establish itself?

What will Spurs do next season?

How’s the new Stars Wars franchise going to deal with the storyline?

Will the DFS sale ever end?

The list goes on….

So my answer to the initial question, having given it some thought and written everything out (this is cathartic) goes back to Mr Williams’ quote “I’m not scared of dying I just don’t want to”.

But that in itself is part of what drives me on.  The one thing I don’t have, is time, so I need to make every minute count and that’s why I’m currently immersing myself in the SSIJ thing.  It gives me focus, purpose and meaning to what time I have left and hopefully will be a legacy when I’m gone.

Then you set yourself little goals to hit along the way.

Raffle of Excellence – check.

SSIJ challenge.

Amy’s wedding.

Holiday in August.

Dare I look further than that.  Let’s wait and see……

Sorry Matt by the way – didn’t put a warning up – hopefully it was quite mild.

It was however the best I could do given the words at my disposal and I can’t do myself more justice than that.

Oh nearly let the opportunity pass me by – most unlike me.  Don’t forget to pop over to www.ssij.co.uk and help us out by donating to the cause – it’s what gives us the strength to carry on.

TTFN good people.

Keep on Keeping on.

 

Raffle of Excellence Winners List

List of Raffle of Excellence Prize Winners.

Ticket number in brackets

1. 100 Cup Cakes in Team SSIJ colours – Dave Topp (6693)
2. Guided Tour of Kew Garden – Rachael Ford (5595)
3. Flying Lap of Thruxton with Tiff Needell – Julie McRoberts (9406)
4. 4 x Odeon Tickets – Jane Prowes (1114)
5. Day SCUBA diving at the British Dive Centre – Sharon O’Hara (6249)
6. 4 ball round of Golf & Lunch at Hamptworth – Carol Chalk (0430)
7. Bath Rugby Club Merchandise – Jamie Muir (4872)
8. Happy Witch Goodies – M.Young (8276)
9. An evening for 2 at the Boat House Salisbury – Liz Du Feu (7537)
10. Guided tour of the Tower of London – Brian Williams (1677)
11. Tandem Parajet Flight – Maureen Chalk (0332)
12. Briers Gardening goods – Andy McGraw (5928)
13. England Rugby Shirt – Danny Adamson (8393)
14. J Arthur Bowers Garden products – Dan Davani (1308)
15. Gurston Down Hill Climb Driving Day – Perry Cocking(1398)
16. Burgon & Ball Tools – Mrs G. Hitchings (3738)
17. Signed Matt Dawson Print – Sarah Stables (4891)
18. £100 Garden Water Feature – David Gooden (3564)
19. Autographed Celebrities Photo Pack – Andy Chaplin (6528)
20. Personal Fitness Session & Plan – Amy Clarke (6395)
21. Private Tour of Wilton House – John Bains (5217)
22. Signed Bottle of Whiskey by PM – Tony Wilkinson (5913)
23. Private family tour of Beaulieu – C Hasted (3856)
24. Luxury Virginia Hayward Hamper – Susan Kington (8766)
25. 2 pairs of Oakley Sunglasses – Jodi Hammond (1815)
26. Tickets to the Chalke Valley History Festival – Kev Coleman (2654)
27. 2 x Tickets for the Rampart Dance Theatre Tour – Stu Mirfin (6747)
28. Evening at Qudos Music Bar & Restaurant – Donated & Auctioned on Day.

THE MORNING AFTER THE DAY BEFORE

Here we are then, the morning after the day before ( I like that line – that’s why I’ve used it twice) and what a day yesterday was.

The whole Family. Friends, old and new, not seen for a long time.  Current friends. The SSIJ Team.  All in one place at the same time – so many great people to get around, that I fear I did none of them justice, as I was spread a little thin.

And mustn’t forget those that don’t pigeon hole in the above. They were there  in their numbers and helped in no small way make the day that much better.

Stood at the bar having a mini re-union of those I will always think of as ‘my boys’ from the halcyon days when we swept all before us on the football pitch, sharing banter, was a real throw back.  I’m still chuckling at Bobby’s reply when I asked him how he was.

“Melancholy” was hardly what I expected.

Has any footballer ever used the word Melancholy before?  Still that kind of sums Bobby up.

The only downer was having to leave abruptly.  Having sat on my sofa for the best part of six weeks, waiting for the elephant leg to reduce to normal, I found that standing up for a couple of hours was too much for my ageing back and consequently had to give into the spasms and struggle the 100 yards to the car.  I felt and looked like I was thirty years older than the spritely 52 I am – in fact most 80 year olds look better than I did at that moment in time.

I did however make it through the Raffle of Excellence, the main event of the day.

Having worked on it for a good while, fretted, worried, cajoled, nagged, encouraged – everything came together yesterday evening and I reckon we ‘proper’ (to use a good Wiltshire word) pulled it off.

Highlight of the Raffle was undoubtedly my Mother (in her 70’s) winning the tandem parajet flight.  It took a good while to restore order, indeed when I got home and rung her she was still laughing herself.  In truth she has always liked Weymouth, so this will give her the chance to see it from a new perspective!!

The Raffle, as a whole, was far more successful than I had imagined as it grew nearer and as it turns out raised £6k – yes that’s six thousand pounds.  How generous are people in these times of austerity? Thanks to you all, if you donated you can feel rightly proud of yourself and sleep sound in the knowledge that you’ve done a good thing, as every penny will go to Factor50 and help people like me.

But that doesn’t just happen.  A lot of hard work went into getting it right.

Whilst I don’t generally single people out as I firmly believe in the team ethic, I will however now.  Tara, Pete and family were brilliant, from the outset and basically sacrificed their whole day getting the tickets sorted (there were a lot – six thousand to be precise).  Couldn’t have done it without you, so many, many thanks.

Which nicely brings me onto an area I have neglected and really shouldn’t have.

The support crew.

In many ways being a runner/rider is easy. Not physically obviously.  But you get up in the morning, don your trainers and get going.  You can however only do that because lots of people have put in a lot of work beforehand and continue to do so as you eat the miles up.

Driving, cooking, feeding, scrounging, mending broken bodies, sorting out routes, finding places to set up feeding stations….the list goes on and on as you try to pre-empt every conceivable situation with a solution before it happens.

Trust me it’s not easy.

Imagine spending all day travelling around the Yorkshire Dales and then having to cook 25 meals in double quick time.  Collapsing in a heap on a camp bed for the night and then getting up at sparrow’s fart (half an hour before everyone else) and cooking 25 breakfasts before setting off and doing it all again.  It just ain’t easy but is necessary – the whole challenge would collapse without these unsung heroes doing their thing.

And they do it all with a smile on their face.  They understand that that is important to keep the athletes going and they do it all expecting no praise or thanks.

So today I’d like to publicly say thanks – we really couldn’t do it without you.

Who are they?

Well in no particular order:

Jon Chalk

Rich Chalmers

Dawne Dawes

Scott Dawes

Penny Chalk

Mandy Forster

Steve Forster

Miné Arzu

and due to injuries, Myself and Sarah will be helping out

You make it what it is.

One final note – there are a lot of people eating Malt Loaf today.  Thanks Soreen.

TTFN.

 

 

My Journey – the beginning (having already given you the end….DOH!)

After my blog a couple of days ago, many of you have asked about the background story which got me to where I am today, so are we sitting comfortably?

….then I shall begin.

Let me say at the outset I undoubtedly did the ‘bloke’ thing and left it a little too long to see a doctor.  I did however know very little about skin cancer, sure I’d heard of it, I’d certainly no idea there were different sorts and definitely had no idea it was a killer.  Like most people I was under the impression you turned up at the Docs, they cut it off and on you went with your life.

How wrong is that?

I’ll just take a mo to talk about Melanoma, stick with me, it won’t take long and if it only helps save one person having to go through what I (and many others) have had to go through (and still are) then it will be time well spent.

Melanoma is the most severe form of skin cancer and until very recently had no real treatment plan (more of that later). 

It is highly unpredictable and as a result, a real so and so to control.

It responds best to early detection but can return years later.

The vast majority of cases are caused through exposure to UVA or UVB light, but about 20% occur for reasons not yet known to the medical profession.

Generally it manifests as a mole or skin blemish which you may have had since birth, changing size, colour or shape.

It is the fastest growing form of cancer, in the UK, amongst young people (17-35 years) and has grown in tandem with the growth of Holidays abroad and the use of Sunbeds.

I’m sure I will have missed some vital info out and I’m equally sure that some of my fellow sufferers can add important facts in the comments section below (it’s a very close knit community that support each other in the most fantastic way), but for now that will do as I don’t want to bore you.

Anyway, where were we?  Oh yeah, my journey…..

I gave in and went to my local Doc in April 2011, to my surprise he was 12 years old.  Having taken my shirt off and exposed the thing on my shoulder, he panicked slightly and went and got a 40 year old. She immediately recognised I was beyond their help and said she’d refer me to the hospital Derm people – she did however think it was Squamous Cell Carcinoma (whatever that was) and reckoned I should be OK.

A day later I was being seen at the Hospital and a few alarm bells started to ring.  After all how often are you seen that quickly on the NHS?

The Derm had a real good look and came to the conclusion that indeed it was a Squamous Cell Carcinoma (there was that thing again – best get on Google), so was I duly booked in for an op to have it removed in a weeks time on the day surgery unit, under a general, which I’ll be honest didn’t exactly fill me with the joys of spring.

A week passed, slowly.  Under the knife I went. The offending article was duly removed from my shoulder.

Job done – move on…..

As this point the first twist raised its head.

Pen, the good wife, works in Histopathology – they check out all the bits cut off people for nasties etc.  Obviously ethically she isn’t allowed to process anything concerned with family or friends but after my ‘thing’ had been checked, nobody in the department could look her in the eye, so she knew it wasn’t good.  However she wasn’t allowed to comment to me – must have killed her for a day.

The next morning the phone rings asking if I was available to ‘pop into the clinic for a chat with the consultant this afternoon?”.  Now that can’t be good thinks I.

In the car I jump and drive, feeling a tad nervous it must be said, to the Hospital and settle myself in the first of many waiting rooms I’ve sat in.  I reckon if I was paid for every minute I’ve spent in a waiting room I’d be a bloody rich man.  Anyway I digress…

Pen was with me and I kinda knew she knew what was coming.  I had no idea.

I was called in and the consultant didn’t beat about the bush – I prefer it that way.

“Well we’ve tested what we removed from your shoulder” said he “and unfortunately it’s a Melanoma.  Given how deep it was the chances are you will die from this”

You what???????

Melanoma?

Die?

When?

Why?

So many questions…..

“However” he continued “I retire in 20 years and it’s my ambition that you’re still my patient then.”

“Mine too” was all I could muster!!

I never saw him again.

Apparently in cases like mine they like to take a big margin away from the site where the growth was, as the cancerous cells (by now I had found out this was cancer – I had no idea) spread across the skin.

So in I went this time for a much more serious op.  A chunk the size of a CD case was removed from my shoulder and a piece of skin, slightly larger, was shaved from my thigh and grafted over the crater, dressed and held in place with 70 odd staples – I know how many were there as the nurse counted every single one as she removed them a few week weeks later.

Having healed well, I was called into the clinic had a chat with another consultant, who was quite keen to get me on a trial.  Apparently there was no real standard treatment for Melanoma, other than what had been sorted 30 years previous and that it seemed wasn’t overly successful for advanced cases – I had an advanced case – great.

A CT scan was arranged as part of the run up to said trial and that found that there was a good likelihood that the disease was in the lymph nodes under my left armpit.  Into the hospital I went and had what is the worse test I’ve ever had – a core biopsy.  Essentially they numb your armpit, cut into it, and with the aid of a scanner guide a needle into the lymph node, not just any old needle but a thick old thing with a hook on the end and fire it into the node.

Did I mention that they numb your armpit?

Except in my case they didn’t – as they fired the needle I bounced off the ceiling several times.

An injection later (thanks then) and the procedure was over and the waiting began again.

Sure enough when the results came in, the beast was in the lymph nodes.

Bye bye 27 lymph nodes.

So, back in to see the consultant, who was still keen to get me onto a trial (a different one) and the cycle started all over again.  CT scan as part of the run up, lymph nodes identified as likely to be infected, this time in the neck, needle in Neck to take a biopsy, spread confirmed.

Bye Bye 72 lymph nodes – who knew you had that many in your neck?

Back on the treadmill and the consultant had one further trial up her sleeve to get me on.  Yep you’ve got it…..CT scan, spread discovered, this time to the lungs, which was obviously serious stuff, as at this point I was transferred to Southampton Hospital under the care of Professor Ottensmeir.  Everyone spoke very highly of him and a Google search later confirmed I was in very goods hands.

He carried out this test and that test to find out what genes I was carrying that could be targeted and gave me a choice of two trials; one was tablet based, the other an injection that delivered an electric shock at the same time.

He was keen on the injection.

I wasn’t.

Luckily I didn’t carry the injection gene but did have the BRAF one, which enabled me to get on the Vemurafenib trial (why don’t they give these drugs easy names like say….Dave?).

The initial results were amazing.  My tumours shrank by at least 50% and it had little effect on my life – bit of a rash, bit of joint pain but nothing that I couldn’t put up with given the alternative.  So for 14 months I took 4 tablets every day and all was well with the world….

Now I reckon that catches up with the last blog.  A bit arse about face I know, starting at the end and then filling in the beginning afterwards but that’s what you asked for!!

A few foot notes.

The drug was that good for me, that I was able set up and take part in last year’s  somethingsillyinjune event – 100 miles in 3 days.  God, I hadn’t even run 10 miles since I was in the Army 16 years previously.

I was the patient representative on the NICE review panel for the Vemurafenib drug, which was finally accepted as standard NHS treatment for Melanoma.  The first advance in treatment for 30 years.  My input was nothing compared to that of the lovely Gill Nuttall, who fronts up Factor50, which is why it’s vital to support them – they do such good work.

But all the same, I’m proud of what I did and feel that it’s some sort of legacy when I’m gone.

So now after all the recent  trials and tribulations I find myself sat here; bloated belly, head shaved with a leg, that at least has shrunk down from elephant to cow size, sorting out this year’s challenge, whereby  I’m going to send 13 of my family & friends across the Pennine Bridleway on my behalf.

Now, they’re the real heroes, so please support them with a donation. Every little helps and days to do are getting few.  Pop over to www.ssij.co.uk and you be a hero by hitting the donate button.  Not only will it make you feel good but you’re be allocated a ticket for every pound you sponsor us as a thank you, which gets you into our Raffle of Excellence where you could win a proper top prize.  Have a watch of the promo film (http://youtu.be/5NKIeMsVPL0) for full details and the prize list – you won’t be disappointed.

OK, I’m out of here, stuff to do, people to see and only one lifetime to do it all in.

If you got this far, Thanks.

If you didn’t, well……… ummm

TTFN

DSCF0840

elephant leg

neck dissection


 

Been a long time …

So it’s been ages since I put cursor to screen and blogged but there’s been a few good reasons for that, mainly this blasted disease I have inside me.

Having responded so well to the trial I was on, I found out at the beginning of December that it had finally failed after 14 cycles (each cycle is 4 weeks and the average patient manages 6 – so I can hardly complain) and a new tumour had sprung up in my lungs.  Now I know it was never supposed to be a cure but that doesn’t mean you stop hoping and feel any less disappointment  when they give you the news.

I was moved immediately onto another kind of treatment which was 4 infusions, one every 3 weeks, finished that and all was hunky dorey with the world.

Except it wasn’t.

On Thursday 14th March as part of my training for this years Challenge,  I ran 5 ½ miles in the evening and retired later that night to bed feeling as fine as I’d ever done.  The next morning I got up as normal, had a chat with wife Penny and went for a shower, still feeling great.  Then the strangest thing happened and I’m not sure I can adequately do it justice in words, but here goes….

My left arm started to twitch, only slightly to begin with but I was looking at it wondering what was going on as I was unable to control it.  Over the next minute or so the twitching became more frequent and violent, to the extent that my arm was literally flying around of it’s own accord, not in a small way but up and down, side to side, just about every which way you could think of.  I was helpless to stop it. It was as if the arm had become independent of me and I was watching something that had nothing to do with me.

I knew I was in trouble, big trouble but could do nothing about it.  As the fit grew in intensity my body was becoming more and more rigid and although I was screaming to Penny for help inside, I was unable to shout out as every muscle had frozen solid.

I guess I hit the deck as the next thing I was aware of was Pen standing over me asking if I was OK, as I led in the bath, everything strewn all over the place with water cascading down . I wasn’t OK as the whole of my left side had stopped working and I could only reply that we should pray it was a stroke – not often you hope you’ve had a stroke is it?

In truth we both knew what it was.

Off I went in the Ambulance and having reached A&E was quickly put through the CT scanner. Within minutes the Doc arrived and delivered the news that the cancer had spread to my brain….hardly a surprise diagnosis I must say.  He asked if I wanted to see a picture of what they’d found, which course I did.

Now, I’m no expert on these things but what I saw didn’t look too good to be honest.  About middle way back in my brain, on opposite sides of my head were two, what looked like very big dark areas – as it turns out I was correct – they are very big.  In fact so big, none of the medical people I see can believe I made it this far without any symptoms.

That though wasn’t the worse news I received that day.  The Doc returned with a solemn look on his fizzog, to duly inform me that I had to hand my driving license in as I was now banned for 6 months – talk about feeling as though they’d cut my legs off!

Within a day or so I was seen by the Consultant Radiologist at Southampton, who having chatted with me and looked me over, recommended 10 treatments of Radiotherapy at the highest dose.

However, in the interim I deteriorated quite badly.  I couldn’t talk properly, lost the ability to type and struggled to get from A to B without shuffling like an old man.

It was purgatory.

However my family around me were fantastic, stayed positive and helped me in every conceivable way they could, especially Penny, who quickly passed her driving test (first time) thereby ensuring we were still mobile and maintained our Independence.

Back to treatment…..

Radiotherapy, let me tell you, is without a doubt the strangest treatment I’ve had to date.

At the first visit they basically take a solid piece of plastic, melt it onto your face and then let it cool down so that it’s a perfect replica of your head.  This is then used on each visit to clamp your bonce in place, so that you are in the same position for each zapping.

At each consequent visit, you lay on the bed, have your head clamped in place and then this big dish thing delivers a blue ray to a set place on your head for a minute before moving to the other side and doing the same.  All over in two minutes, no pain, in fact no feeling at all.  They actually make the machine bleep to reassure you that something is happening, that’s how inane the process is.

I forgot to mention that the treatments take place every day for 10 days – working days, as they give you weekends off!!

I’ve now finished that and it obviously did something, as I can now talk again, type again (as you can see) and my physical state improved immensely.

For a while…..

On the Friday of the Bank Holiday at the beginning of May,  I did nothing more innocuous than kneel down and found I couldn’t then stand back up.  My left leg very quickly ballooned and looked like it belonged to an Elephant.  It was masshosive.

So off to A&E we went (again) in the morning and it must be said they were very good and having thoroughly checked me out, came to the conclusion that I had an Oedema, but as a precaution they would recommended  I had a scan on the Tuesday when everybody was back at work.

Tuesday came and once more to the Hospital we went.  Within 10 seconds of the scan starting the radiographer decreed I had a ‘big old clot in my groin’.  Thanks then A&E.  I’d only walked round with that for the three days!!

I was duly put onto Deltaparin which is a blood thinner.  Unfortunately it’s an injection and it is the most painful one I’ve ever had.  It has to be given in the thigh or stomach and stings like a mother trucker – whilst your having it and for ten minutes afterwards.

I have to have this every day for the next six months.  It wouldn’t be so bad, but Penny has a real look of relish as she does it and then I have to thank her afterwards.  Did I mention earlier how great she’s been? Hmmm……

This stuff was supposed to work within 3 or 4 days but I’ve found myself with a leg bigger than Nelly’s up until this week.  On Monday the leg started to get smaller and yesterday was the first time I’d actually been able to wear socks and shoes since the 3rd of May, which was just as well, as I had a free trip to watch the footie at Wembley (which incidentally was rubbish).

I am suffering a tad today with a bad knee but I’m hoping that’s down to the fact that for the past 4 weeks I’ve done nothing more than sit on my backside with my leg elevated.  We’ll see.

What then is the sum total of all that?

Firstly, I’m not going to be able to run the Challenge – I may have a go at Cycling some on the last day but in truth I’m struggling.  I have however ploughed on with the organising and we’re just about there.  New this year is our Raffle of Excellence which contains the most brilliant prizes.  You can view them all by visiting Youtube and viewing the promo film on this link: http://youtu.be/5NKIeMsVPL0  It’s all explained on there but basically for every pound you sponsor us we give you a ticket, yes for nowt, so therefore the more you donate the better your chances of winning.

So get yourself over to www.ssij.co.uk hit the donate button and keep your fingers crossed that you’re one of the lucky ones whose name comes out of the hat.  The prizes really are fantastic, don’t believe me? Go have a look now…..

The second consequence of all of the above and far more serious, is that I have been given a timespan of between no less than 12 weeks and 18 months before this disease beats me – now there is a Challenge.

I know the odds are stacked against me big time but that’s never bothered me in the past and I’m not going to change now.

Anyone want to bet against me?

That’s it for now then.  Won’t leave it so long next time, so in a bit people.

 

Pride

So, where to begin?

Well probably the beginning is as good a place as any…..

To be told you have a terminal disease is hard. It tests your mental toughness to the very core. It hangs over you every minute of every day and I can understand that many will collapse under the enormity of it all. Others will get very angry and shout at the moon (god knows I’ve wanted to many times). Some will hide themselves away fearful of confrontation, fearful of the pity in the voices and eyes of others, not knowing what to say to friends, families and acquaintances, in many ways shielding those same people from awkward and painful interactions.

Me?

I’m in the group that meets it head on. Accept the inevitable (hey – shit happens) and move on, I can’t change the situation so no point in dwelling on it – time’s now a precious commodity, so I can’t be frittering mine away on chasing an impossible dream.

Make it count and make a difference would be my mantra. I don’t mean make a difference in a earth shattering way by discovering the new penicillin but to make my mark in my little world in my own little way. Do some stuff that really matters in my world, that I and those around me can be proud of and so it began……..

As I sit here now unable to walk I wonder if it might have been better to shout at the moon – hell no. I wouldn’t have traded the last few days for anything. I have witnessed and been part of the very best that the human race can offer both physically and emotionally. You had to be there to appreciate it, my words will never be enough to convey the effort that was expended on behalf of others by Team SSIJ.

One example; how many people do you know that could run 74 miles in two and half days and then because time was slipping away run a half marathon in 2 and a quarter hours (oh yeah – cross country over the biggest hills the South of England hold, did I mention that bit?) to get us back on track? Without a doubt the most inspiring feat of physical effort I have ever had the privilege to witness and trust me, it was a privilege.

Let me try and put all of this into some sort of context. We have just run 100 miles in three days across the harshest terrain the South of the UK has to offer. It happened during two days of blistering heat and a third of driving rain (who will ever forget leaving Bo Peep car park?). Every five miles or so there was a support crew ready to feed, water and mend us. It probably couldn’t have been much better (OK the Scottish bloke aside) so it’s a good job we used professionals all round.

No wait!

That’s right we weren’t professionals at all in fact, and I don’t mean this disrespectfully, we were rank amateurs. At best only a couple of the runners had run a marathon before but the majority had no running experience at all, other than school cross country and the support crew were made up of friends and families who had no specialist qualifications over and above the ability to drive, cook and carry. That is other than Luke, who despite the pressures of time and suffering monumental hay fever kept us taped, bandaged and massaged to the finish line – of course in keeping with the whole challenge, he too had never done anything approaching this before (thanks for telling us now I hear you all shout!!).

I ask you then what the word professional actually means, ‘cos if you tell me you can find me a better set of qualified individuals I just won’t believe it. As one we believed in the greater good and that is an unshakable characteristic in a team and worth more than any piece of paper pertaining to be a certificate of competence. Upon reflection I’ll change my mind (it’s my prerogative OK?), we weren’t rank amateurs at all, we were the epitome of consummate professionalism – nobody could have done a better job.

Want another story of ridiculous unselfishness – well you’re going to get one whether you like it or not.

Mid way through the second stage of the second day my knee gave out. I don’t mean it became painful, it actually stopped working. My wonderful little Amy stuck with me as we walked about three miles at snail’s pace to the check point where everyone else had waited. It became obvious very quickly that I wouldn’t be able to carry on without a lot of work, so Geoff who had come along as general fetcher and carrier volunteered to run my miles so the team could continue. Brilliant.

But there’s more.

With no training he set off and ran 50 odd miles……in his boating shoes. Yes you read that right his boating shoes and even when I got back on he continued to the end (he was in speed kings by then but that’s a completely different story). He’ll tell you it was nothing compared to the other runners because he’s like that, but how many people do you know that would, or could for that matter, run 50 miles cross country in 1 ½ days wearing boating shoes? We tried to talk him out of it but he just wasn’t prepared to let anyone down. Phenomenal effort Geoffrey and Labi Siffre right back at you.

I’m sure everyone has their own personal low. Mine? Old Winchester Hill on day one. As we came out of a set of woods you could see this mound on top of a very big hill.

“Let’s just hope we’re not going up that big boy” I muttered to Amy, fully knowing inside that we were bound to be.

However the path, though ridiculously steep, snaked away from Old Winny. Inwardly I cheered loudly. Then slowly it weaved back towards this giant of a hill, but wait, we’re going away again. And so it continued for a while until we duly arrived at the foot of the mound on top of the hill and even then it flirted with me, teased my very being by sending us right along it’s base but then as we rounded the corner to follow the base eastwards Amy spied it…………….the South Downs Way Signpost from hell pointing directly to the top.

Man it was steep, so f**!ing steep. Mental torture at it’s best. Still as Amy said cheerfully when we got to the top “That’s that one out of the way and we don’t have to do it again”. Thanks Ames.

But the lows weren’t many and even if they were nobody complained, nobody argued they just got on and did their bit. Amazing really when you consider that all 19 of us were living in each others pockets for 3 days under the most extreme pressure that most of us had ever experienced. When someone was having a ‘moment’ others rallied around and pulled them through knowing that they’d be having a ‘moment’ of their own around the corner and somebody would rescue them. True comradeship.

I could go on and on but won’t so here’s a few I’ll just throw out there.

Who knew that petite Jade would have such an inner core of steel, actually I’ll correct that, titanium?

Who’d have thought having seen Sarah’s leg at the end of day two that she’d walk again let alone get up the next day and power through to Eastbourne?

Nobody would have thought that a pair of speed kings from Asda could keep 11 people so amused for such a long time. Praise be to George.

I would never have guessed after stage one that we’d get to love Jon’s horn.

Snaggletooth? We all know what they are now, especially Joe.

So much banter I couldn’t begin to list it out. Anyone out there got a quote of the trip?

So that’s it then. Done and dusted. Job done.100 miles in 3 days across the South Downs.

I can’t possibly write down how thankful I am to the other 18 that helped me do this. Everyone was phenomenal and underlined my belief that basically human beings are good. Never believe otherwise, the idiots are a headline grabbing minority. For the support team to give up their time and place the needs of the runners way ahead of their own and for those runners to put themselves through the physical and mental demand this challenge called for, on behalf of others, is the most unselfish of acts. Feel proud of what we achieved. Each and every one of you that was there deserves the tag, Legend.

I called and you all came and I couldn’t feel more pride than I do now. Tomorrow it will be gone from most people’s minds but not ours. We were there and shared an experience that will stay with us for the reminder of our lives and I, for one, couldn’t think of a finer group of people to have that memory of and with.

So, back to my mantra; Make it count and make a difference. Did I manage that? In my world I think so, or least hope so.

If you weren’t there but donated thank you as well and if you want to donate you still can do, just hit that button and you too can do your bit to help me help others like me.

Keep on keeping on people.

The end…………..or is it?

Lon, Lat & Long Lost Cousins (The Final Countdown)

One week until the madness begins……….OMG!!!!!!!!!!!!

At long last I’ve been given the all clear to run but I’m guessing now is a little bit late to get fit, so I’m relying on a bit of mental toughness and my fellow runners to get me across the South Downs – but I’m confident in them, after all they’re a good bunch.

Recce has all been done and the stopping points located & sorted. I did discover something useful during this particular exercise – putting longitude & latitude points into a Satnav is far more accurate than postcodes, we were pretty much spot on with every location. I also found out that no matter where you are you will see somebody you know.

There we were sat in a car park in the middle of the woods when some participants of the South Downs Way half marathon went jogging past on a track through the trees.

‘Alex’ says Joff ‘that looks like your cousin.’

‘It does’ replies Alex ‘because it is!!’ [abridged conversation]

We shouted, quite loudly, at him but his earphones blanked us out. A text though was responded to a few hours later declaring that it was indeed him. I would say at this point that the World’s a small place but I’d be lieing – have you ever tried walking around it? Still it was amazing nonetheless.

This Saturday we have our send off gig very kindly organised by Thom Belk at the Old Alehouse. It starts at 7pm, so it would be nice if you could drop in for the odd pint or three whilst taking it some quality tunes and supporting us with the odd donation or four!! Also big shout out to those performing, many many thanks from all at SSIJ.

That’s it for today haven’t time to ramble on for ages I’m afraid – places to go, people to see, deals to be done!

What’s that?

Oh yeah………..and finally…….

No time for a shaggy dog story today so a quick witticism to sign off:

These days many people get their exercise jumping to conclusions, flying off the handle, dodging responsibilities, bending the rules, running down everything, circulating rumours, passing the buck, stirring up trouble, digging up dirt, slinging mud, throwing their weight around, beating the system, and pushing their luck.

Don’t be one of them – get out and get on.

5 Bar Gates are better than Asprin – FACT.

So days to do are getting few.

It seems that the vast majority of us are suffering for our art and have various niggles and I’m no different I’m afraid. The past two weeks have been a nightmare and just when I feel I should be really ramping things up training wise I’ve not really been able to do very much at all. One of the side effects of the drugs that I’m on is arthralgia and I have had joint pain in places I didn’t even know were joints.

The worse, believe it or not, has been in my left elbow – I really have never had pain like it and I’ve fathered two children. It’s not too bad when resting but as soon as I start doing anything it is excruciating. In fact me and little Amy went for a run a couple of nights ago and it turned into a power walk. I had to keep stopping and resting the elbow on metal gates (the cold relieved the pain – obviously) so I hope that the good farmers of Hampshire & Sussex have installed plenty of Steel 5 bars as opposed to wood!! Anyway it’s only pain……

Sunday I popped down to Winchester to find the start of ‘the way’ and I’m glad I did. A bit of research had thrown up that different people had different ideas of where to set off from so I thought it prudent to take matters into my own hands and sort it out. I had expected some sort of grand sign declaring the start/end of the South Downs Way but no such luck. There isn’t anything (that I could find anyway) and it isn’t until you start really looking around that you find any directions. It would have been hilarious had we just turned up on the day, 10 of us running up and down Winchester high street like something from a Benny Hill film – still it’s sorted now and we can all sleep that little bit more soundly knowing that we at least will not be taking an hour to get out of Winchester.

More good news came when we found out that on line donations have broken through the £1000 barrier. What a great effort. So let’s push on by spreading the word to all and sundry. Every donation, no matter how small really does count and every penny goes directly to Factor50, no Just Giving or Virgin Money vultures skimming off 5 or 6% with this challenge – didn’t know they did that? Me neither until I started this. Don’t forget to gift aid either – worth an extra 25% or so on every donation.

My little jaunt to NICE last week went OK. The first half of the meeting was most informative but the second half was way above my payscale. Most of it was spent with statisticians discussing the merits of this or that curve on this or that graph. I didn’t understand most of the words let alone what they meant but in the main everything appeared positive – we shall see. At the end of the day it all comes down to cost v benefit and whilst the latter is massive, so may be the former. Let’s just hope a deal can be done.

Another side effect of Vemurafenib is something called Keratoacanthoma’s. These are little non-benign tumours that pop up on the skin and I’ve had 5 removed thus far. Unfortunately one on my forearm wasn’t totally excised (cut off) and has come back so I’m off in tomorrow to have that sliced and diced – lovely. Another couple of days off training as a result – I really don’t think I’m destined to be at my peak for this but hey, it’s only 100 miles in three days. Hahahaha…crazy stuff….hahahahaha (continues laughing manically ad infinitum).

Anyway I know how much you all look forward to this bit so here it is. AND FINALLY……

My best mate took inspiration from me taking on this challenge and decided he would do something to get himself in shape. He started by walking 5 miles a day and slowly increased this and is now running 10. Three months later we have no idea where he is…….

Keep on Keeping on.

Football, Scotch Eggs & Smelly Clergymen

Not blogged for a while as I’ve had loads going on but at long last here I am.

“So what’s been going on Steve?” I hear you all say.

Well …….

Firstly I had a massive presentation to do at work for a major retailer. I broke my previous record for talking and managed to keep going for about 6 hours. As part of the whole wooing process we took the customer out for posh nosh at a top place in Lincoln. Apparently this hostelry is famous for it’s cheese menu, so after we’d finished our main nosh we ordered up some random cheese with biscuits. One of the cheeses was quite definitely the worst thing I have ever had the misfortune to eat – called Stinking Bishop it tasted like, well the best way I can describe it is the smell of Cow Shit. My guess is every time a waiter goes to the kitchen and says I’ve a table of slightly drunken idiots wanting some cheese, the Chef doles up the old Bishop. Worse part was we still had to pay for it and it definitely wasn’t cheap!!

So having broken my world record for talking I then proceeded to set another one a week later when I managed a whole 7 and half hours at the next presentation. This time we were at a lovely restaurant/hotel in the middle of the Yorkshire moors (I think) and the food was top notch – no foul cheeses but a scotch egg starter that cost a tenner. Now it was without a doubt the best damn scotch egg I’ve ever had but for ten quid I guess it bloody well should have been.

We’ve also had lots of somethingsilly stuff to organise and a football tournament to take part in. Big thanks to Thom Belk for organising said night and to Salisbury FC for hosting it.

A hard fought semi final saw the SomethingSilly Allstars overcome Shrewton Youth on penalties, despite playing the last 20 minutes with only ten men (cough cough) and SCFC Supporters over came the challenge of the Old Alehouse to claim the other final spot. The Allstars just shaded the big game to claim the trophy and despite Toz Judd getting named player of the tournament, it has been said many times (in this house anyway) that the decisive moment was definitely the first penalty in the semi final shoot out – now who took that I wonder………

It was a great night all round and aside from the fun and football, we raised over £200 so a massive thank you to everyone that turned out to play or watch. It’s greatly appreciated. I must confess however that trying to walk the next day was a challenge – who’d have known after all the running I’ve been doing (different muscle group I guess…..hope).

What else?

Oh yeah I’ve been interviewed by Spire FM. All was going well with Hen until the big boss man cut us short as he had a meeting with a deadline that included her. As a consequence I didn’t quite get to say all I needed to and I have no idea when it’s being aired (I was kinda rushed out). Never mind it was nice of them to want to interview me and hopefully he hit his deadline, I got the feeling if he didn’t the world was going to end and we don’t want that do we???

Had my monthly check up from the neck up at the hospital yesterday (they didn’t rush me out) and have been passed fit for another month which is nice – it does mean I’m OK to do the 100 miles though!! The training has taken a bit of a hit recently as I’ve had some side effects from the drugs that have prevented me from running but I’m back on track now and racking up the miles. Still don’t get that endorphin high and find it incredibly hard work but it will be worth it I’m sure.

Next week I’m off to ‘that London’ as the patient advocate on the initial NICE appraisal of Vemurafenib. This is where they try and decide if the drug should be introduced as part of the standard NHS treatment for Melanoma. It’s all assessed on a cost v benefit basis so fingers crossed – at the end of the day I understand that the NHS pot is only so big but without the drug I’d probably not be here now, so what price a life? And being particularly selfish, what price my life? Should be interesting. I’ll keep you posted. Firstly though I’ve got to try and decipher the documentation they have sent through to me as preparation for the meeting – I don’t understand half the words let alone what they’re saying.

The whole fundraising thing is going OK – I’ve hit my £1000 sponsorship which I’d set myself and there’s still a few weeks to go, so hopefully I’ll smash that and I know that lots of you lovely people have been donating on line so big thanks. If you haven’t sponsored us yet I know you will (you will won’t you) and to be honest why hang around, do it now. It’ll give you a nice warm feeling and help people just like me, now that’s got to be worth a few quid hasn’t it? Cheers you good people.

Anyway before I sign off here it is (groan) and finally……..

An overweight young lad decided to sign up for a weight loss program complete with personal trainer. It was explained to him that an essential part of the training was a run each morning at 6:00 a.m.

Determined to take it seriously he went to bed, setting his alarm for five thirty so when the door bell rang the next morning, he’s up, dressed and ready to go. Upon opening his front door he is confronted by the most beautiful blonde he has ever seen. She’s tall, very well endowed above a slim waist with long graceful legs. Dressed in a small pair of running shorts and a halter that can barely contain her, she smiles seductively and says, “If you can catch me, you can have me” turns and runs off at a very fast pace.

This continues every morning.

After three (very frustrating) weeks the young man begins to get in shape and can almost keep up with her, in fact he just about touches her shorts but can’t hang on. However, he thinks, tomorrow will be the big day, I’ll catch her and have her.

He barely sleeps that night waiting in eager anticipation.

The next morning, the bell rings precisely at 6:00 am. He runs downstairs to the door and throws it open. There stands a huge burley woman, at least six feet five inches in height and over 250 pounds. She’s muscled up like a plough ox and has a large wart amid her facial hair. She grins and says, “Hi, I’m your new trainer. If I can catch you, I can have you!”

Keep on keeping on people.

Busy, busy, busy

So much going on at the moment I don’t really know my arse from my elbow to be honest.

Work is ridiculously mental (just to prove that, it’s Sunday and I’m finishing off a presentation), SSIJ has a lot of ‘little’ things that need finishing off, football season is drawing to a close, I have this appointment and that appointment and I have to find the odd couple of hours a day to train. In amongst all of this I also have to make time for The Wire and Criminal Minds – thank god for Sky+.

So what to talk about today. I know, Football as that will definitely please all of my female readers….

Now I think it would be fair to say that we haven’t had the best of seasons at Shrewton Utd but yesterday was funny. We were playing at the League Champions elect and it was their final game of the season in which they had only to get a draw to be definitely crowned as ‘The Winners’.
In expectation of an easy home win, all and sundry turned up from the League Committee, complete with Trophy, medals and winners banners. As we went three nil up there were a lot of very worried red faces above the grey suits!! Unfortunately we couldn’t hang on, up the slope, against the wind and a goal in the last couple of minutes equalised affairs and we weren’t quite able to fully be party poopers but my, how close.

So why would I mention that on here?

Well I think it sums me up perfectly. I love being the underdog. In fact I just love doing things that everyone tells me I can’t and taking on things that seem beyond me. It pushes me, gives me a focus and purpose and is the very reason I will complete the 100 miles in June. It may well prove too late for me but if we can raise awareness of this damn disease and save just one young life, as well as generating some funds to help research into a cure then 100 miles is no distance at all……is it? (If I keep saying it eventually I will convince myself. If I keep saying it eventually I will convince myself. If I keep saying it eventually I will convince myself. If I keep etc……..)

So just before I set off into the great blue (grey actually) yonder with daughter Amy for a gentle 10 miler here’s todays and finally………

A man’s main hobby was running. He spent all his weekends on the trail, paying no attention to weather. One Sunday, early in the morning, he went to the park as usual. It was still dark it was cold and raining and he decided that for once he’d give it a miss and go back home. He walked through the front door, went straight to the bedroom, undressed and laid down next to his wife.

“What terrible weather today honey,” he said to her.

“Yes,” she replied “but my idiot husband still went running!”

Keep on keeping on people.