Paris trip Day 4 – Beauvais to Paris

First of all I must say a massive thank you to everyone who sent wishes of support to me, it made a huge difference knowing there was a whole bunch of people wanting me to finish. Now it’s complete I need to start nudging people for donations to get us to our target of £20,000. Amazingly since I set-off the team has raised nearly 75% which is a 10% increase on where we were on Thursday … great work!

For those reading this who want to donate then please click on this link and give as much as you’re able, all this money will make a huge difference to Kidney Cancer patients in the UK.

The final leg was harder than I thought it was going to be I guess because my legs had had enough, however I did have the joy of knowing that it was only 44 miles and not 50 (which is what the route had initially told me) that made it much more bearable. Way more hills than the profile suggested, but quite a few of them downwards to compensate a little.

The clocks had gone forward which meant that my 6am start was really 5am and cycling in the dark is never easy, and it was a tad fresh to say the least,  but by 8am it had warmed up a bit and I was back in full light winding my way through country villages. My breakfast was a stop off at a village bakery that had just opened as I was passing through, Warm Pain au Chocalat …. cant beat it. The roads were quiet until I hit the outskirts of Paris but given it was Sunday it’s nowhere near as bad as London.

Once I’d got to Saint Denis I knew I’d finished, it was just a case of navigating myself through the streets of Paris.  My “mate” the Garmin sent me off wrong once but did a pretty good job otherwise, if only the battery on the iPhone was of any use I’d have used that because GeoLives is a fantastic app that places your route on google maps and you can see your position as you go.  Whenever the Garmin failed me I used it to get myself back on track.

Coming up to the Arch de Triomphe is so cool, no matter how many times I come here it’s always an impressive site. Thankfully the traffic was quiet and I could cycle round it a few times without feeling I was putting my life in any danger.  I did get to the middle and took a few photos but sadly the police asked me to take the bike back onto the Champs Elysee, they didn’t have a great explanation as to why bikes aren’t allowed but they weren’t unpleasant about it, and I always try not to argue with people with guns :)

I also had a welcoming party with Paul and Caroline and their kids and my mother so I wasn’t left alone and it was great to see them!  Straight into a cafe, Streak, Frittes, beer, banana split! (well what did you expect after 14000 calories of effort? Salad and orange juice?). Then a nice Apres lunch walk around the back streets of the Louvre and then to the station. Lots of strange looks from the locals as I was walking around in my Bermuda shorts and flip-flops in the rain (lightest things to carry), but if I offered some amusement…..

The only real disappointment of the whole trip was the lack of little bars and restaurants along the route. I was expecting many many more. Overall it’s do-able, June will be warmer, we’ll have a support van full of food and drink, and each other to push ourselves along.

Some lessons learnt:

  • Probably best we stay in Dover on Day 1 so we can take our time and not panic about chasing ferry times.  It does mean a very early start the next day but we can rest a bit on the ferry
  • Take extra cleats.  I admit there were hills I had to walk and it wore out my cleats which made them tough to lock in.
  • Dont wear my carbon fibre shoes, they’re too stiff and my big toes were always numb by the end of the day and quite painful. So I’ll be buying easier to wear shoes.
  • Get lights that a) Fit (so I dont have to hold them on) and b) Work.  I suspect we wont need them in June as it will always be light, but just in case.
  • Dont ever ever ever carry a rucksack.  If you’re doing it on your own then take an Mountain Bike and stock it with decent paniers.  Road bikes in a group will be fine because we have the van.
  • If you’ve got gadgets, then learn how to use them before you go :)
  • Make sure the van is well stocked with food and drink along in the way, there are plenty of lovely spots to stop but few shops except in the towns we pass through.
  • Do a lot more hill training to get the legs in shape

All the spare tubes and bits and pieces I took I used none of, but would still have been crazy not to have taken them along the way.  I came across 2 bikes shops en-route (which I needed for lights and cleats).  One in Boulogne sur mer in the town centre, very helpful chap, and the other in Abberville (very close to the hotel and opens at 10am), again very nice and helpful.  I’m pretty sure there will be ones in Beauvais as well but I admit to just wanting to get to the hotel and crash.

I’m sure I’ll think of other things and as I do I’ll stick them up on the forum at this link. As Trevor says, it’s a bit quite on the forum at the moment but as we all get into the training it should liven up a bit.

Am I looking forward to doing it again in June? Yes, but I need a decent week off to let my legs and shoulders recover :)

I wonder what happened to that lock?

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Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on March 29, 2010

Patient Advocacy for KIDNEY CANCER PATIENTS

Patient Advocacy

Well  this is how I explain  what it means to use the title a ” Patient Advocate” To me it   means putting the interests of  Kidney Cancer patients first and foremost and having the experience and knowledge to be able do that.

Julia Black and I have been advocating for rights for Kidney Cancer  patients, since way back when. It was in  2006  that we started this battle and sadly it is still going on today. Only the drugs have changed as more advances are made in our treatment options - but we are still thwarted  by the NHS and N I C E  who will not allow cancer patients to have these drugs funded by our  NHS.

Julia was one of the first cancer patients to fight the battle for the right to access to clinically effective drugs and to challenge rationing of cancer drugs by N I C E, who  stopped cancer patients getting the drugs their Clinicians wanted to prescribe.  It’s a long story and one which needs to be told, all the different patients and families ; the tragedies and the triumphs. Families who then joined in to try and help Mums and Dads and brothers and sisters, Julia and I have files full of letters and emails  and some long  hard fought battles took over 500 letters and months to fight. It was a terrible time and a disgraceful episode in the history of the NHS BUT STILL OUR FIGHT  GOES ON.

Julia was in the brave group of breast cancer patients  who fought, not only to get the drug she and other desperately needed (Herceptin) but  then  had to fight the funding bodies and regulatory bodies  like N I C E to get the drug approved for others .

I met when  Julia  was trying to help a Kidney Cancer Patient friend  called Keith Ditchfield who was trying to get funding for the drug Nexavar. Julia’s knowledge and contacts were working for Keith and through Julia’s efforts Keith was finally funded to have Nexavar paid for by the NHS – one of the first in the Country if not the first. We thought we could take Julia’s methods and my knowledge of the Cancer Networks and PCT commissioning processes  and make it work for the many other Kidney Cancer patients who needed the new innovative  drugs that were being used all over the world to treat Kidney Cancer except here in the UK.

I will continue the tale of what happened as when I have the time, but in the past 3 weeks mine and Julia’s time in increasingly  taken up now with a new tranche of kidney cancer patients who are now being denied Everolimus ( AFINITOR) a new drug manufactured by Novartis.

But please don’t just soldier on alone, do remember there is help here at the James Whale Fund for Kidney Cancer  www.jameswhalefund.or and the Kidney cancer Support Network  www.kidneycancersupportnetwork.co.uk  -  we are here to help each other.  Julia and I  are cancer patients ourselves, we know what this is like and we are doing this for no other reason than we believe cancer patients have a right to proven licensed clinically effective drugs. Please don’t  go on feeling you are on your own with no-one to help you.  Don’t feel you need to pay out for professional advice -  knowledge is power is this situation and we  can unlock that knowledge  for you to help you get the drugs you need. Our methods are used all over the Country by other  bona fide cancer charities who are trying to help their patients access treatments. Don’t be afraid to ask for help – we are  a community  of Kidney Cancer Patients and we need to look after each other. Which is what we  do here  at the JWF and the KCSN – come and join us and together we  will campaign for kidney cancer patients to have  NHS  treatment  “the right treatment at the right time” !!!

Posted under Afinitor(aka Everolimus/RAD001), Campaigns, Cancer Drugs, General, N.I.C.E., Rose Woodward, User Posts

This post was written by Rose Woodward on March 28, 2010

Paris trip Day 3 – Abbeville to Beauvais

OK, so the Garmin is re-instated and the user has been sacked, what a muppet! You would have thought that a gadget freak like me would have at least checked to see if there were any options, you know the ones like “Ignore Off Road Tracks”, “Follow Route” etc, but no, much easier to swear at it, blame Garmin for being incompetent.  So, after I set the gadget up correctly, guess what? … it worked like a charm.

I admit to having a sense of humour failure yesterday as I was walking down essentially a ploughed up field, but today …… much much better.  The route was flat(‘ish) most of the way and I was able to crack on at a reasonable pace getting me to Beauvais at around 4:30pm and I set-off at 10am.

Beauvais is a lovely little town, great shopping area and a fantastic Cathedral, maybe if we all set-off a little earlier in the morning in June we’ll have time to explore a little, but to be honest I was very grateful for the lie in.

Compared to yesterday this was a breeze and it was nice to kick back a bit and just enjoy the ride.  I’ve discovered that the French seem to have more a fascination for dogs than the English do, all barking in support for me along the route, or just wishing they could leap over the fences and take a piece out of me, I’m pretty sure it was the latter.

I have come down with a dose of fully blown “man flu” which isn’t helping much I just hope it goes as quickly as it came.  I’m coughing, spluttering and sneezing …… Hah, ’tis but a flesh wound.

Oh yeah, somehow I managed to “lose” the 2.8kg lock I was carrying … it must be somewhere, possibly under the bed at the hotel in Abbeville :)  Boy what a difference that made I can’t wait to do this with no rucksack as well in June.  The hotel must have though I was nuts, but “losing” it was the best decision I’ve made.

So tomorrow, it’s a 6am start with the hope of getting to Paris by noon to meet my Mother (who’s in Paris as well) and friends of ours Paul and Caroline who live there.  Now getting up a 5am to be ready for the off at 6 isn’t so bad, but of course I would choose the weekend the clocks go forward, which means no breaky, so I’m stocking up on some carbs now before hitting the sack.

No rain today, so please no rain tomorrow. I’m not going to pretend this has been easy, I do need to work on my fitness and leg strength fort June.  I ache everywhere, but if it was easy it would be no challenge, and that’s the point.  For me if this raises awareness and money for Kidney Cancer then job done!  Behind the scenes the fund is working hard to get as much publicity as we can and it’s not an easy subject so if anyone has any ideas then let me know and I’ll pass it on, or just contact them direct.

As a quick rejoinder I had a chat with Nick Turkentine today who runs the James Whale Fund for Kidney Cancer and there are some really exciting things in the pipeline that the fund is working on.  It was a reminder of why we’re all doing this so fellow Arch to Arcer’s and readers tell your family, friends and work colleagues that we need to raise as much money as we can for this event.  Everyone has done so well to date and we’re up above 65% of our target of £20,000.  Click on the links below or the links on the top left hand side of the web-site and give what you can.

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Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on March 27, 2010

Paris trip Day 2 – Boulogne sur mer to Abbeville

Yowser am I tired, got little if any sleep last night as the day was flying round my head, but I forced myself out of bed with surprisingly few aches and pains.  I expected sore shoulders because of the rucksack, and I wasn’t disappointed, however the great thing is I wont have to wear this for the actual event because we have the support van.

I left the hotel and pedalled my way down to the  ferry terminal, checked in at about 5:30am (as requested), and went to the front of the queue and waited …. and waited, only to discover the ferry was delayed by at least an hour.  No rain thankfully but it was cold just standing about.  I did have one of those bizzarre meetings you have in life, I met Wolfgang Stars from my Dresdner days (head of risk) so at least that passed the time.

Eventually they let me on the boat at around 7:10am.  It arrived around 12 noon so immediately I was on the back foot to try and make up some time.  Boulogne is not a bad little town in the old parts and I found a nice little bike shop so I could replace my cleats, like an idiot I forgot to get my back light fixed and that would come back to bite me later in the day.

Getting out of Boulogne was quite hilly but then it was flatish for a while and then the hills started again.  Tired from yesterday and now with a streaming cold I struggled to keep going.  For the actual event we’ll need to ensure the van is well stocked with food because I found very few places to eat, a lot of places were shut…..  so I did the whole day on an egg mayonaise sandwich and a pain au chocolat …  not a good move.

The countryside is lovely so we’ll have nice terrain along the way and it was all gentle country roads with very little traffic. With the weather with me most of the day I only got wet a couple of times.

It went a bit wrong around 20 miles from the end.   The garmin decided to take me off down a track that then turned into field tracks …… it is fired!!  so I ended up having to walk a fair few miles to get back onto the road by which point it was dark. I did cycle a bit but with a broken light but I was getting quite a bit of grief from passing drivers so had to walk again.

Huge relief to arrive at the hotel and to get dinner and a hot bath.

Tomorrow the garmin is fired! the 2.5kg lock is fired! (I’m leaving it here as it’s bruised my hips so badly and it’s slowing me down)

Lets hope the weather holds and I can crack on tomorrow! There is a cycle shop in Abbeville so I’ll swing by there in the morning….. sadly it doesn’t open til 10am … shucks I’ll have to lie in :)  Hope the cold goes.

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Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on March 27, 2010

Paris trip Day 1 – London to Dover

After a restless night’s sleep I got up at around 4:30am to get myself ready, showered, check packing and to grab a cup of tea before heading out the door at around 5:30am.  What I did notice on the pedal through Watford to the station was how all the traffic lights were green, so it only took me about 7 mins to get there, hence I arrived very early at Euston.

After much fiddling with the Garmin Edge 705 at Euston working out how the navigation operated (should have checked that) I trundled over to Marble Arch and then decided to kill the remaining hour or so having breakfast in a cafe behind Selfridges that does a mean scrambled eggs on toast. They also had SKY TV on in the background  which meant I caught the latter end of James Whale’s slot … as if I needed reminding of why I got up this morning :)

About 3o miles in and am so glad that the route takes us off main roads and onto country lanes.  With the exception of the first 5 miles it’s been pretty quite and uneventful.  I was relieved when the route didn’t go onto the A20 where I thought it would but ran in parallel instead on a quieter main road, so no worries Hugh … no motorways as yet (I’ve gone under the M25 and over the M20 so far. There was a bit of a steepish climb from Horton Kirby to where I stopped for a coffee so I think this looks like a natural mid to late morning stop for the group, the cake is great, tea good and they’re used to cyclists and dont mind us en-mass.  

Not sure exactly how many miles I did since the coffee stop, the garmin timer stopped and I didn’t notice for about an hour.  The garmin sat nav feature is a bit flaky, I’ve gone down the wrong tracks a few times and at one point it sent me down a raod that put me 20 miles out of my way so I had to double back, but I guess that’s why I’m doing it now so at least one of us knows where we’re going.  Of couse the Garmin was off as I was getting lost so I wont be able to see what I did :(

It got to about 1pm and then the rain came and by 2pm I was soaked to the skin so I held up at the Park Inn next to Leeds Castle and here I’ll stayed until got dry and the rain stopped.  I didn’t have to be in Dover by any specific time because I’m now taking the morning ferry.  So I to relaxed and take it easy…..big mistake.

The route thus far had been hilly but went through some pretty villages to compensate and if we’re not chasing ferry times then we can all chill out and just enjoy the day, walk where we need to and make up some time where we can.

About an hour after I left the pub Mr Cock-up and his entire family joined me and I went totally off course, and it was getting dark. The garmin was next to useless as was it’s operator and it kept on sending me off in all sorts of directions. The rain started again and it became obvious that I needed to stop following the sat nav and just get to Dover. I’ll put it down to experience and have a go on my motorbike when I get back to ensure the route is mapped out properly. Lots of upydowny bits as it got towards Dover. However I reckon my 80 mile ride turned into well over 100 with all the ponsing around I did towards the end. One minute the Garmin said I was 10 miles away and then next it said 15 … nuts!! Bring back the good old map an compass.

Once I got to Dover the temperature dropped considerably as I sailed down the hill to the port and I was grateful for a warm welcome and a hot bath at the Premier inn. I have to say they are good hotels, clean, comfortable, big rooms and quite. Yes the location is always bad but the rest compensates for it.

Got very little sleep to be honest and I was up again at 4:30am to get myself for the ferry …. which of course was late anyway :)

All in all I had a great day, made some mistakes, didn’t go as fast as I wanted but with about 12kg of stuff on my back it was to be expected (wont need this for the real thing as we’ve got a support van …. phew!!). Also there were a few aspects of the route I wasn’t happy with that need to be looked at. Please, please, please …. no more rain!

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Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on March 25, 2010

Getting ready for Paris…..

So I’ve got over all the aches and pains of the Vasaloppet ski marathon and now I’ve switched focus to the Arch to Arc cycle ride in June.

As I mentioned in my earlier blog I’m doing a pre-run of the entire route next week to make sure that we take in some interesting places and that the timings are all right.  I’ve done a few 30 or 40 mile days in the last week to get my rear into gear and the bruising to settle.  All the hotels are booked, the ferry from Dover to Boulogne sur Mer and the final train back from Paris.  All I can hope for now is the same weather we’ve been getting this week.

All the gadgets are working… The iPhone, Garmin GPS, Solar powered rucksack (yes they exist and I have one :) here it is), and if it arrives in time a helmet camera to video bits and pieces on the way.  I’m a self proclaimed geek.

The one down side of doing this on my own is that I have to carry all my own clobber and that means a stupidly heavy lock (3KG) that really weighs me down.  I’ve got quite a nice bike (see below) and the insurance company insist on it sadly :(

My Bike at Wellington Arch today

I tooled myself up this morning with everything that I need next week and set out on a 40 mile ride to check I didn’t buckle under all the weight, and so far so good, I think I can do it.

I met up with an old friend called Andy Skinner at Covent Garden for lunch, he did a 1000km challenge last year and is joining us on the Arch to Arc.  It’ll be good to have someone who’s had some real life experience of hacking long distances over consecutive days.  I think that’s the key for everyone, doing 50 miles in a day is more than do-able, however it’s getting back into the saddle the next day to do the same that’s the tricky bit, it can get a little sore if you’re not used to it, so bear that in mind as you’re doing your training, I tend to cycle through the pain over a few days and then it settles down.

My main concern is day one and making sure we get to the ferry by 18:00 (it sets off at 18:45) so I’m going to replicate the exact times by setting off at 8am from Marble Arch, taking it easy out of London, having a good hour’s stop off for lunch. It’s essential that we’re in our saddles and ready to ride by 7:45am at the latest, any later and we’ll be cutting it too fine.  I’ll publish the route once I’ve fine-tuned it and if anyone has any places they think we should be cycling through in France then let me know and I’ll see what I can do.

I’m conscious that I’m very used to cycling through London rush hour traffic so I will do my best to take this into account by not weaving in and out of traffic at every opportunity and hold back to emulate how we’ll ride in a group.  I want to keep our average speed at about 10mph or above, that should mean we’ll all make it in plenty of time.

I also decided to go to Marble Arch today to see what the set-off would feel like, and it should be great as we all set-off from there down towards Buckingham Palace, passed Westminster, over the Bridge and onwards.  This is the view we’ll get from Wellington Arch

My bike resting up against the Wellington Arch and view towards Buckingham Palace

So that’s it really, my bike goes in for a full service on Monday and then I’m good to go.

As a by the way, we’re up over 65% of the £20,000 target, so keep the money coming in, Sally Hewitt is steaming ahead in the sponsorship stakes!! Nice one Sally!!

I’m going to be watching the Sports Relief John O’Groats to Land’s End cycle ride tonight on BBC1 …  it may give us a few tips as well :)  Hopefully it’ll be available via BBC iPlayer as well

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Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on March 18, 2010

Arch to Arc Update

It’s been a while since I wrote about progress to date, however things have been moving along a pace and the June date is starting to get ever closer.  Time to begin thinking about oiling your pedals and getting out there to start training!

The numbers in the event have been pretty much nailed down and we expect to see 14 of us on the start line at Marble Arch. With over 60% of the £20,000 target already reached this is an outstanding achievement by everybody, lets keep the pressure on and see if we can exceed this figure and make a real difference to Kidney Cancer patients around the UK.

Having recently left my current employer I have a little time on my hands over the next couple of weeks to focus on some of the logistics, it’s been a long time coming, I’d hoped to be free from work in November last year, but with one thing and another it’s taken until now to sort things out.

To kick start my own training I’ve just completed a 90k Cross Country Ski Marathon in Sweden, possibly the hardest thing I’ve ever attempted, but great fun non the less.  So now it’s full steam ahead with the cycling.  Next week (or the week after) I’ll be cycling the proposed route from London to Paris to make sure there aren’t too many SNAFU’s along the way and that we dont end up on any dual carriageways (Hugh).  I haven’t really planned it as such, I’ll just pick a nice clear morning sometime and wing it.  Ruck Sack, Passport, Vaseline, Money, Camera, Phone, Spare set of clothes (and a bit of washing powder) and of course a few spare inner tubes.

The folks at the fund have selected a few hotels, so I’ll be giving those a go, making sure they can take a heard of cyclists (or whatever the collective noun is).  A well stocked wine cellar is a must and it would be rude not to sample a few of those and report back.

So I guess I’ll blog as I go and give a day by day account on progress.

By now you should also have all received your entry froms.  Please please can I urge all of you to fill these in ASAP and get them back to the Fund.  We need them back in so we can arrange the final bits and bobs around travel.  If anyone has any questions then feel free to call me and I’ll do my best to answer.

If anyone has any suggestions with regard to the route then now’s the time to get your oar in.  The fund is doing it’s best to find a day where we can all meet up prior to the event as well as a “get to know each other” thing.  We also have a nice new shirt design especially for the event, so we should all look like Tour de France pros (even if we dont feel like it).

If anyone is interested in getting involved in any other cycle events as part of their training then I can recommend the Winchester to Wantage ride.  I’m doing this with a couple of the other Arch to Arc’ers.  I’ve also entered the London to Brighton. There both in the region of 50miles each so a perfect day out for training.  These may also be great opportunities for fundraising.

Anyway, more soon!

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Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on March 12, 2010

My Vasaloppet Cross Country Ski Challenge

Well, we’re all back from the Vasaloppet Cross Country Ski week in Sweden.  What an experience!  Over 50,000 people entered and finished their various races over the course of the week.  Importantly the four of us who went all finished, which was the icing on the cake!

It seems like a long time ago that we made a commitment to do this race, although in reality it was only 6 months ago.  It would have never have crossed my mind to take this up as a sport, but I’m so glad I have.  Can’t wait for the snow to come back next season!  A big big thank you to all the teachers at the www.rollerski.co.uk (Iain, Ekaterina, Yevgeniy, Alan and Mary) for all their patience, without the rollerskiing and the trip to Austria there was no way I’d have stood a chance.

We went for the final race, held on Sunday.  It’s a 90 kilometre Classic style race between two towns Salen and Mora.  It was an excellent course through undulating and pretty countryside.  It’s amazing how much your mind blanks out the pain, my memory says it was just a quick jaunt over a few hills to the finish, however the reality was that for me it was an 11.5hr gruelling endurance test, much harder than anything I’ve ever done.

We stayed in a little ski resort near Mora called Gesunda which meant we had to be up by 3am in the morning to be at Mora and the bus to Salem by 4:30am.  This was the only part of race organisation they made a bit of a mess of.  Getting to Salem from Mora is not a problem in itself, however there were so many entrants this year that the traffic jam about 6k from Mora meant that quite a few buses missed the start at 8am.

There were around 16000 people in the race so you can imagine it was a bit of a hustle at the start, but to be honest even though I fell over about 200m into the race it was nowhere near as bad a jostle as I thought it was going to be.  Perfect weather, not to hot, not too cold and a bit of sun every now and then.

The Start of the Race

We started in the back pen (pen 10) which means we were very much with the masses, so it was a bit of a shuffle as we all got going.  It starts off on the flat for about 500m and then you have a right turn up a very long and steep hill.  This was basically a traffic jam and we all waddled like ducks up the hill trying desperately not to fall over.  If I was to do it again (which I want to do) I’d try and get a better seeding because I reckon if you could get into Pen 8 or 7 it would make a huge difference to your time, and the tracks would be in better condition.

Once at the top of “the hill” the race opened up a bit as we pulled into the first station (Smågan).  From there on in it’s net net down hill although I have to confess I found the flat sections tough work.  Top tip for next time – don’t do 42k of double polling at Dorney Lake a few days before the race, which is was what I did so I was a bit drained from that and ended up doing far more diagonal striding than I should have (that’s my excuse and I’m sticking to it!)

There are seven strategically placed stop off stations along the way which seem to come along at the perfect time i.e. just before you decide to quit.  A few cups of blueberry soup, some bread and a bit of water and you’re off again.  Most people break the race down into a series of 8 sections and just focus on one at a time, if you just see it as 90k it becomes overwhelming.  A tip from a Swedish chap who’d done it 10 times told me to ignore the first 50k and not look at the signs telling you how far you’ve got to go (which are placed ever 1k).  Once you’ve got beyond 50k you can start looking at the signs …. anyway, it worked for me !

The long and short of it from my perspective is that this is a mind over matter experience, your body screams for you to pull over, find a bar and relax in front of a warm fire and a cold beer.  You have to dig deep to convince yourself to carry on and get to the end.  I have to admit that I got to the third station (Risberg) and felt like jacking it in.  The only thing keeping me going was the thought of having to tell all the people at home that after all the talk I’d failed.These feelings soon passed and I started chipping away at each section.

There were some exciting bits on the way, made even more so because we were at the back and the track was well worn, for example there is a very steep downhill bit that requires you to snow plough down … the only problem is that over 12000 people had already been there and it looked more like a downhill mogul field …. lots of crashes and near misses (I survived!).

Once I got to Eldris (9k from the end) I had to keep on telling myself “it’s just a quick training session in Hyde Park with the Rollerski club, don’t stop”.  It got so dark at one point that they lit the track with candles … which was nice, although I don’t think I derived much benefit from it.

If you want the full details of my race then here’s the link.

To put my humble 11.5hr time into perspective the winner did it in 4:02 …. which to me is unimaginable as it means he was travelling at an average speed of nearly 22 kmh!  … how can anybody be that fit!

The Winner!

From a cross country skiing perspective I’ve learnt a lot and feel I can step up to the next level and enter some shorter races to build myself up to next year’s main race. Now we know what’s required I know I need to do more endurance training than I did.  I have to say though if you’re looking for a sport to get into you could do a lot worse, it’s low impact, uses every part of your body, highly aerobic and you just dont seem to get the injuries you get with running.

The event is well organised and you dont have to think much for yourself, bags are taken and returned, showers and food are taken care of, transport is easy and more importantly there is food, drink, waxing, medics all the way along the route so you really dont need to take much at all.  I made it with a bottle of water (which I had filled at stations) and I only had 1 energy gel.  I saw people with ruck sacks and all sorts of caper which can only have slowed them down.

Overall the exhilaration at the end and the overwhelming sense of achievement is worth every ache and pain!

So, will I don it again? … Absolutely, and this time I will be looking for sponsorship for James Whale Fund for Kidney Cancer. I was very reluctant to ask for any money this year because of the high probability of failure, however now I know it’s more than possible I’ll be looking for a better time and some cash!!

Those of you who are feeling flush and want to donate this year then please feel free to click on one of the links below for my next challenge which is the Arch to Arc cycle ride from London to Paris in June.

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

Posted under Andy Thomas, General

This post was written by AndyThomas on March 11, 2010

Cancer Patients an Easy Target for Cost Cutting

NICE have rejected all our new drugs for kidney cancer apart from one, Sutent, which was finally won after a huge unnecessary cost of life, due to their usual unfathomable delays and our dreadful NHS Post Code Lottery. NICE recently issued draft guidance to reject our latest drug Everolimus, for second line treatment, and now we await the outcome of their appeal process, which is not due until June. Whilst NICE continues to take its time many have been left with no effective treatment. Patients are again having to apply directly to their own PCT for funding, which is in itself just another time-consuming paper intensive and cruel process. The last thing a seriously ill cancer patient wants to do is to spend valuable days and months in a fight against local NHS bureaucracy.
Cancer patients appear to be an easy target for NHS cost cutting, despite the fact that most of us have paid a lifetime of contributions. We now appear to be little more than an expensive nuisance to some highly paid NHS administrators. It was reported recently in the press that Sophia Christie, who is none other than the Chief Executive of Birmingham NHS, had upset cancer patients by dismissing cancer drugs that provide vital pain relief to thousands, as “death deferring,” and she suggested money would be better used elsewhere. Just to add insult to injury Ms Christie was addressing the NICE Annual Conference in Manchester as a guest speaker when she made these remarks. So who knows what influence she may have had on the very people we rely on for our new drugs? This was particularly insensitive as we look upon each new cancer drug as a “bringer of hope” for the extra time we are given, which is a more positive way to view our options. Also, who knows, perhaps during this extra time a new drug will become available even better than before. If “hope” is taken away then what are we left with? It is worth reminding ourselves that those countries with the best cancer survival rates are those who allow sequential treatment with the most effective new drugs. One could argue that many other interventional medical procedures may be considered as “death deferring”. Shockingly, we have since discovered that Ms Christie now appears to have been appointed as lead advisor to the new NHS End of Life Care “workstream” for us all!
In today’s Telegraph it is reported that Ms Christie says, “We are still in a state where we are operating what is a lot of 19th century healthcare alongside 21st century healthcare. This is an opportunity to move to 21st century healthcare.” Good of her to confirm this, as I would have thought that modern effective cancer drugs are a true representation of 21st century healthcare treatment! She talks about the need to use hospitals less as a way of addressing the £20 billion that the NHS has to save over the next three years. Would it not make more sense for the many duplicated expensive tiers of Senior Managers, Very Senior Managers & Directors to first be culled before they cut the patient care and front line services – or are they just all protecting their cosy non-accountable jobs and associated perks? In 2008/2009 these managers and administrators cost us the taxpayer, some £5.6 BILLION compared with £2.7 BILLION when this government came to power. We certainly do not need 152 PCTs, & 10 SHAs with all the associated job duplication and meetings involved. We could have the best healthcare system in the world but alas it needs a truly dedicated and strong leader to take the NHS by the scruff of the neck and shake out all the time wasters and unecessary processes and put the patient first for once.
Our online petition to the Prime Minister asks for a full and urgent review to be made of the NICE process for appraising all newly licensed and approved Cancer drugs. We already have over sixteen hundred signatures and we are approaching the top of the list in the Health category. So if you want to add your own support to try and make a difference for ALL cancer patients then please do so at:

http://petitions.number10.gov.uk/NewCancerDrugs/

Posted under Cancer Drugs, Clive Stone

This post was written by Clive Stone on March 11, 2010

New International Kidney Cancer Coalition

 

For a long time now several of us who are trying to raise the profile and knowledge of Kidney Cancer have been talking together and swopping our trials and tribulations. Well, last year a few of us got together to try and get equity in treatment options, drugs and strength in numbers  to help argue our case with regulators and manufacturers – we want to improve the availability of clinical trials, get consistent information across Country borders and be able to support each other when we are looking at new KC research, treatment, funding etc.

so…… this letter is from those of us who have put together a steering group to make this dream of a stronger and united coalition into reality; The International Kidney Cancer Coalition.

Please let me know what you think of the idea, we now have several other patient groups in different Countries who have joined us. We have extended invitations to all the Kidney Cancer Organisations  to join us and make our voice louder and stronger….

IKCC – An Open Letter to the Kidney cancer Community  - click to veiw the actual letter in this  PDF  file or scroll down for   simple text version.

An Open Letter to the Kidney Cancer Community

Bad Nauheim, Germany, the 8th of March 2010

Dear Patients, Caregivers, Patient Group Leaders, Medical Experts, and Industry Sponsors:

This open letter is about the beginnings of IKCC, an international network of kidney cancer patient groups, along with background information about funding of this initiative.

What are the objectives of IKCC?
IKCC stands for International Kidney Cancer Coalition. It will be a network of independent kidney cancer patient support groups from around the world. The organization was born from a strong desire among various national patient groups to network, cooperate, and share experiences.

IKCC will be a supplement to existing organizations, and we hope to future ones as awareness of kidney cancer grows around the world. Our aim is to network efficiently, to share information, to develop and promote best practices in patient support and patient advocacy, and to meet unmet needs expressed by the various groups. All kidney cancer groups are welcome, as are individuals interested in starting advocacy and support groups in their own countries.

Why an international coalition?
Experience with other rare cancers proves this type of international network is valuable, supportive and inspiring. Most cancer associations, especially for rare cancers, have limited resources. It makes absolute sense to share information, to cooperate, and to work on similar projects together. Some examples of successful international coalitions:
• International Lymphoma Coalition – a worldwide network of lymphoma groups
• International Brain Tumour Alliance – an international brain tumour advocacy group
• Myeloma Euronet – European network of 42 groups from 20 countries
• Sarcoma Patients EuroNet Association – European coalition of 17 groups from 13 countries

The preliminary mission of IKCC is, “Networking, collaborating, and advocating on a global level to better support patients in each nation.” We believe that together we will be able to speak as one voice to expert panels and to the industry on behalf of many kidney cancer patient support groups.

How will IKCC be funded?
IKCC’s funding policy is based on the well-known “Code of Practice Between Patients’ Organisations and the Healthcare Industry” of ECPC, the European Cancer Patient Coalition. ECPC is a well-established organization comprising over 300 European national and international cancer patient organizations that have adopted the code of practice. IKCC already adheres to this code. After registration as a legal entity, IKCC will be a member of ECPC. In the meantime, each organization involved in IKCC is governed by the rules of transparency and ethical relations within their own country.

Our first conference – May 14-16, 2010:
The main objectives of the conference in Frankfurt are to learn more from each patient organization and to evaluate the future objectives and role of IKCC.

All the work for the conference has been done on a voluntary basis alongside our regular work for our national organizations. To cover costs for a global conference, we asked various pharmaceutical companies to support this international project with unrestricted educational grants. We are pleased to have their support. When agreements are finalized, we will publicly announce all sponsors in accordance with the ethical demands of full transparency in funding.

In conclusion:
IKCC will be a friendly, positive, welcoming organization centering on a common cause: Every day we see patients dying from kidney cancer. We would like to do all we can to achieve the best support, care, and treatment for kidney cancer patients and their families everywhere in the world.

With best regards on behalf of the IKCC Steering Committee:
Dr. Marion Beier (DE), author
Markus Wartenberg (DE), author
Other members:
Tony Clark (CDN)
Vandana Gupta (IND)
Deborah Maskens (CDN)
Andrew Wilson (UK)
Rose Woodward (UK)

Association: IKCC Registration pending.
Phone: +49-6032-9492-439
ikcc@lebenshauspost.org

Posted under Campaigns, Cancer Drugs, General, Rose Woodward

This post was written by Rose Woodward on March 9, 2010