A Whale in Wales? and Rolling Stones?……. Whatever next!

There’s lots of activity at the moment on the Kidney Cancer front, and it’s such a pleasure to see the momentum picking up.  Here’s a few highlights …..

  • Clive Stone is “rolling” out his campaign again for the new drugs to be made available.  Please, please all you Kidney Cancer patients/families/friends respond to Clive’s request at this link.  Thanks to Clive’s efforts we had enormous success last year when we all campaigned outside the NICE HQ in London, so lets see if we can do it again!
  • James Whale will be hosting and event in Wales, Swansea at the Dragon Hotel on 21st November– “Whale in Wales” I suppose you could brand it.  This sounds like a great night out, if you want more information then check out this link.  As I’ve said before these evenings are always great fun.  If you’ve ever had anything to do with James before then you’ll know he’s not exactly backwards in coming forwards which always adds an extra spark to any event.
  • On top of this a lot of work is going on in the background leading up to the Kidney Cancer Patients Day on 18th November.  Make sure you all sign up to this, it’s the day after my birthday and I’ll be deeply offended if you don’t come along !

On a personal front it’s been one of those weeks where I appear to be doing nothing and yet there is so much going on I hardly know where to start.  A definite feeling of spinning my wheels.

Work’s in complete turmoil as we wait patiently to discover whether we’ve got jobs or not, motivation is down on a grand scale, and they’ve set the date to mid/end of November to decide our fate.  This date has slipped twice so far, so you can only imagine just how much people’s sensitivities have risen.

Another thing that’s been praying on my mind is that my Father’s also due to go into hospital next week for an operation so I’m going to have to figure out a way of getting up to Yorkshire to see him.  He’s having a pretty rough time at the moment with one thing and another, just wish we lived closer.

Lately I’ve found myself focusing more and more on things I can control in my life rather than things I can’t (probably a good thing).  So, to that end at least I have a plan in place if I’m made redundant.  My plan is to take a year out and focus my energies on the charity work and make sure that we make the Arch to Arc a success the first year round.

Also I want to be able to help The James Whale Fund for Kidney Cancer out as much as I can on the IT front to help build the brand.  As a starting point I had a great night out with Paul Fox of Fonda on Monday to talk about all things “geek”, so watch this space over the coming months.

It is a risk to take a year away from work I admit, but I think that it’s a risk worth taking, and to be honest I can’t see it looking that bad on my CV if I’m filling my time with things that are productive.  My real hope is that the time out will lead to other things as I always believe that things have a way of working themselves out as long as you don’t sit on your behind doing nothing.  I now worry more about not taking this opportunity than I do about any financial impact, if I dont take it it will be an opportunity lost.  Let’s see!

Please sponsor us at either VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010, Oxford Support Group Demonstration 27-Aug-08, Patient Day 18thNov2009

This post was written by AndyThomas on October 28, 2009

Arch to Arc 2010 News…………

Well, I’m amazed ….. I thought I’d struggle to get 5 people to come along to the Arch To Arc Cycle Ride Event next June, but it seems I was wrong.  So far 19 people have said “maybe” on the FaceBook page and 17 have said “Yes”,  plus I have another 3 or 4 people who’ve said off-line that they are coming along.  Fantastic news! 

As I’ve said before I’m going to limit this to 20 people for the fist year and then we can widen it out to bigger numbers going forward.  Why?  Well simply because we want to make sure we do it right first time and make it an event folks want to do time and time again.

So, what’s next?

First off I’ll be sending a message out to all the event attendees over the coming weeks telling them to start the fundraising now by:-

  • Giving the James Whale Fund for Kidney Cancer a £300 deposit by the end of the year so we can start booking hotels and ferry/rail tickets etc.  This deposit will be refundable as long as you raise the £1000 target. This will show us that everyone is truly committed to the project,  there’d be nothing worse than booking rooms and tickets etc only to find that nobody turns up.  Clearly if you’ve already raised £300 for the event then no deposit will be required as the commitment will already be there.
  • Next you’ll need to setup a VirginGiving page.  What I’ll encourage people to do is to put their £300 deposit into the VirginGiving page, this will set their targets at £1300 if they want to get the £300 back.  It’s pretty easy to setup a VirginGiving page. 
    • Goto VirginGiving
    • Click “Start FundRaising”
    • Click “Organised Event”
    • Select June 2010 as the “Event Date” and then Click “Find Event”
    • Select “Arch to Arc Cycle Ride” from the list then Click “Next”
    • Put in £1000 in your “How much are you planning to raise” (or £1300 with deposit)
    • Select “No” to “Has your Charity contributed to the cost of the event”
    • Select “Just me” in answer to the “Are you fundraising on your own or with other people?*” question (seems a bit odd given we are a team, but trust me it does odd things if you select “With others”
    • Then Select “Next” and follow the instructions from there, where you can put up a photo and description etc.

We have an overall target of £20,000 to reach, about half of which will be going on costs, the rest will go into the charity.  It’s a big target, but there is time between now and June to hit that if everyone works at it.

In the next week or 2 I’ll be working closely with the James Whale Fund for Kidney Cancer around the organisation. We’ll be firming up the dates and times, route, hotels, ferry etc.  We’ll also be putting together a questionnaire for all the entrants e.g. Kind of Bike, Medical Conditions, Dietary requirements, travel plans to and from the event, do you want an extra night  stopover in Paris after the ride etc, things like this.  The fine details are yet to be worked out, but my intention is that we have all of this nailed by Jan 1st  so we can all hit the fundraising and training schedules with renewed vigour at the start of 2010 … working off all that Christmas pud! 

For those of you not able to join us on the ride please give as much as you can to this event and spread the message to all your family, friends,  local newspapers (or national if you’ve got contacts).  There are very few opportunities to raise awareness for Kidney Cancer, we want to make this one count!

Please sponsor us at either VirginGiving or JustGiving 

Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on October 23, 2009

A Kidney Cancer Evening and Curry with a few Celebs…

Once or twice a year I get invited along to parties that The James Whale Fund for Kidney Cancer organise.  Last time it was at the House of Lords with Christopher Biggins giving the after diner speech.  I don’t know what I was expecting but he was hilarious, despite the fact that his computer presentation didn’t work, clearly well practised at off the cuff speaking.

Last night was the kick off for Britain’s Biggest Curry Party.  It was held at Café Spice in London with the TV Chef Cyrus Todiwala MBE cooking for us all.  I reckon (without counting) there were about 40 people.  All in all good fun, good food and good company although I have to say it was a strange choice for a starter, when was the last time you had Steak and Kidney pie in an Indian Restaurant? ….. but Kidneys were Cyrus’ theme for the evening and it was a welcome surprise, could have gone for 2 of those, in fact I nearly did but for the fact that Nick Turkentine (Fund CEO) was looking just as I was trying to whip his portion off his plate! (he’s quite protective of his food).

I’m not much good at randomly walking up to celeb types, for some reason you feel like you know them because you see them on the TV, but you don’t, so somehow it makes it awkward to talk… I guess that’ll be the star struck idiot in me.  I find it’s just as much fun (and easier) to watch.  However the ones I did speak to were nice.  

For those of you who remember David “Kid“ Jensen from his Radio One days, well, he was there with his wife… they’d just come from lunching with Prince Philip (as you do) and were a great couple.  I also discovered that there is somebody smaller than me! in the guise of David Van Day, singer in Dollar and I’m a celebrity get me out here contestant (and no I don’t watch it!).  I didn’t get to talk to him but on TV he looks like  such a tall chap (sorry David it must be the Tom Cruise effect, but just remember .. small is beautiful)… clearly I’ve missed my vocation because if TV makes you look tall then that’s where I need to be!

So hopefully an evening where lots of awareness and money was raised whilst everyone got to stuff their faces with curry,  and a great kick off to the curry week … I might even have signed one of the guests up for the Arch to Arc challenge!

More on the Arch to Arc in another blog later, but the great news is that getting 20 people signed up seems to be happening faster than I expected.

As a quick postscript … sorry Sarah, I didn’t mean to tear the banner last night, but dont think anybody noticed, well at least they wouldn’t have done if I hadn’t kept on pointing it out.

Please sponsor me if you can at either VirginGiving or JustGiving 

Posted under Andy Thomas, Arch To Arc 2010, Britain's Biggest Curry Party, General

This post was written by AndyThomas on October 20, 2009

A Toad on a Box of Matches……

That’s it, after this weekend’s efforts I’m looking to buy a “Classic Style Cross Country Ski Machine”.  I entered myself into a four hour endurance race which basically meant going round the Hillingdon Cycle track as many times as possible in four hours. 

I managed about 22k in just over 3 hours and then had to stop before my foot arches fell though the skis and scraped on the tarmac, they were agony!  To put things into perspective the winners of the event managed over 100k in that time (102k to be precise).  Now, I can make excuses about how I’m just a beginner, they were using the skating style and I was using the much slower classic style, my skis are training skis designed to go slow, yada yada yada, but the long and short of it is I still look like a toad on a box of matches and I expend way too much energy just trying to keep upright.

So, I’m looking on e-bay for a Nordictrac Ski Machine, and boy are they rare items.  I’m not even sure you can buy them new anymore, they seem to have been superseded by these elliptical trainer things which are no use to me because what I really want is something that emulates the ski style as best as possible.

Dear friends, if you know of anyone who’s got one of these things and it’s just collecting dust in their garage, basement , or wherever, then I may be your man… I can take it off your hands, and the chances are it can then collect dust in my garage (or shed in our case).

90k by March ….. Simples! (or to coin a phrase from “The Royals” …90k by March “My Ar*e”!

Please sponsor me if you can at either VirginGiving or JustGiving … Thanks!!

Posted under Andy Thomas, General

This post was written by AndyThomas on October 19, 2009

What is it with some English Hotels, I went to do a talk to a the training day NHS Cancer Registry staff on Thursday in Bristol, we had to stay overnight because it’s just about 200 miles from Cornwall and I needed to be there for 9.00 so they booked a hotel for me … well I thought to myself – it will raise awareness of the work the James Whale Fund is doing for Kidney Cancer and it will only be a couple of days out of life so I’ll do it. But my goodness what a dire Hotel. I’m not a houseproud person but even I draw the line when the dust is so thick it changes the colour of the carpets and blinds!!!!

Do the people who own these places go blind within a year of buying a Hotel ? – how can they not see the state of the place. I had no option but to stay and in the end we had to laugh, one of the other people said it was like Faulty Towers and he he was waiting for Manuel to come on duty. Ho Hum.

Going away isn’t too bad if at least you can stay somewhere reasonable overnight !!!

Cancer Registry’s by the way are part of the the NHS; they collate all the coding documents from Hospital Clinics, surgeons, scans, MDT’s then they input every detail of data about individual cancer treatments so that we can get accurate stats about cancer numbers, survival rates, prevelance, geographical variations, staging, male or female/ cancer types/ dates/name of hospital/type of operations/type of scans ……everything that is needed to see what is happening within each type of cancer so next time you read a figure about the number of cases of Kidney Cancer the information will have been collected from all the Cancer registries around the UK.

Posted under Rose Woodward

This post was written by Rose Woodward on October 17, 2009

A Day for Kidney Cancer Patients……..

It’s the James Whale Fund Kidney Cancer Patient day on the 18th November.  The day after my birthday as it happens, but that’s a different story, however, as a slight aside,  for those of you who are wondering what I want for my birthday, well that’s simple, what I want is a donation from each of you to the Arch to Arc challenge. We’ve raised 6% of the £20,000 target so far (not bad for a couple of weeks effort), but still a long way short of the target.

Anyway, moving on, I have to say I’m really excited about the prospect of meeting other Kidney Cancer patients, their families and carers.  It’s so hard when we’re all stuck behind computers and forums and facebook etc…. so much nicer to meet face to face and exchange stories and experiences.  Every time I’ve been to something like this I’ve never regretted it and have always come away having learnt something, at the very worst I’ve made new friends.

The great thing of course is that it’s entirely free for Kidney Cancer patients, families and carers, in fact I like anything that’s free, but I suppose that’s the northerner in me coming out!

I’ve been to a fair few of the James Whale Fund events over the last couple of years and I’ve enjoyed each of them, and met all sorts of people that have enriched my life in one way or another. So not to sound too much like an advert …. Sign up and  get yourselves along to it! (I’ll be the one in cycling shorts and a bow tie).

See you all there!

Posted under Andy Thomas, Patient Day 18thNov2009

This post was written by AndyThomas on October 16, 2009

Fundraising the Arch to Arc Challenge

When I first embarked on the Arch to Arc event I had no real idea what I was taking on. All I knew was, that as a Kidney Cancer survivor I wanted to do it.  I’ve talked about it often enough with the James Whale Fund, but I needed to turn that talk into reality.

Physically I know I can do it so I’m not at all phased by that.  If it was just me I’d have a crack at it this weekend!

What makes me nervous is organising the event, however I am enjoying the challenge, but at least I’m getting the help and support I need from the James Whale Fund, let’s face it  there’s so much to think about:

· Keeping the numbers of riders down to 20

· Ensuring we have hotels to stay in

· Getting the ferry tickets (having to pay for those up front)

· Getting the rail tickets (having to pay for those up front)

· Making sure the route is acceptable and possible.

· Hoping upon hope that the days we’ve elected to it do work.

· Involving any authorities we need to involve (police?)

· Getting media coverage

· Support vehicles and drivers

· Kit, food, drink

· etc etc etc

The list is endless, but the biggest concern I have is the raising of the money. £20,000 overall is a big target to hit and we need all the help we can get. The question is, where am I going to get this help from?

I need to learn, and I need to learn fast.

I’ve been thinking of various ways I can raise the money (suggest as many others as you like)

· Social Networks like facebook and twitter. This is all fine and dandy but people tend to ignore your pleas for cash because they are swamped by so many other things. You’re lucky if your plea even registers amongst all the other news feeds. It’s hard to not take this personally sometimes but I’m sure it’s not deliberate. To truly make this work I think you have to take the one on one approach and send direct messages.

· E-Mail Campaigns – I tried this before and had some success. It is a little more personal than the blanket approach.

· Work Colleagues again, much the same as above, the carpet bomb e-mail does have an impact but it’s never as great as you’d like. The mail is read and the intention is always there but the day to day gets in the way and it’s regrettably forgotten about. On top of this you feel a real heel nagging people.

· Company Matching – Most companies will offer matching schemes for their employees e.g. for every £1 you collect they will match that amount up to a certain figure (for my company that’s £600 for example).

· Leaflets – I’ve created some that people can use as part of their campaign. Not too sure how much impact this is going to have, but at worst it will help to raise some awareness, which is always good. I hope that some shops are maybe willing to leave them on the counters for people to pick up. Here are the links for those interested:

o http://files.me.com/taff.thomas/47mgzu – (13cm * 18cm)

o http://files.me.com/taff.thomas/oh0zwk – (A5)

o http://files.me.com/taff.thomas/m25obc – (A4)

· Sponsorship forms – I’ve been told by another member of the team that this is one is the best approaches, getting pledges from people, going up to them and talking to them and getting their commitment. It’s a pain because once the event’s finished you need to collect the money, but it seems to get the best results AND you get the added benefit of getting names and address’ so next time you can do a little direct marketing. An example of a sponsorship form can be found here

o http://files.me.com/taff.thomas/j0si1c

· Local Shops and Companies – I’m going to attempt to see if I can get some local firms to invest a little into this venture. It’ll mean a lot of door-stepping and “smile and dial” cold calling but if we could attract a few then we’ll maybe able to hook them into other events. We can offer to put their logos and/or their web-address on any documentation we put out.

· Local Radio – Can we get a slot on local radio pushing the event?

· Local Newspapers – I’m trying to attract the attention of the local newspapers to see if they are willing to write an article on the event

· Company/Organisations Newsletters – One of the riders has managed to get an article written in his national magazine! Fantastic achievement and will make all the difference.

What we do need to do in a big way is to engage the Kidney Cancer community as a whole i.e. Patients, Carers, friends and families. Figuring out a way of involving them and getting them to help push the message is a bigger challenge than one might imagine. The forums and mail lists don’t seem to be working that well as a means of raising funds and I’m wondering why. It seems that contact has to be made more directly to truly capture people’s attention.

I’m going to try and use the blog as a means of updating people on progress, maybe next time we run the event in 2011 we’ll have captured some lessons learnt along the way.

If you can, help this cause by donating to my JustGiving Site or to my ViginGiving Site (whichever one suits you). I need to raise as much of my £5000 target as I can before Christmas so we have enough money to pay for the Tickets and Hotels, so sorry to ask so soon

Posted under Andy Thomas, Arch To Arc 2010, Fund Raising

This post was written by AndyThomas on October 15, 2009

Some after thoughts from the debate…..

I was just thinking whilst driving into work this morning about how Cancer Patients seem to be ignored by politicians when it comes to setting policy, especially around the subject of NICE and the selection of drugs. Why do we get ignored? Well I guess they feel that we’re too emotionally wrapped up in the topic to see clearly.

I can see the logic in that argument, however I track myself back to where I was just after my diagnosis and how I felt about NICE then. In fact I even wrote a blog defending their position stating that somebody has to make the hard decisions around cost and what should be allowed and what shouldn’t. I think from memory I even went as far as to say it was a good thing. So, there you have it, I actually used to defend the arguments that both Prof McCabe and Dr Evan Harris talked about at the Lib Dem fringe discussion…. Yikes!!

And then it struck me, that’s the problem; they are not close enough to the human aspect of this to see what’s really going on. As a patient (or survivor) I suppose I get to see things differently now, I get to see that day after day people die from this disease and yet nobody, seemingly, does a thing about it, they just wave “Qaly” in our faces and say “sorry, somebody has to suffer, it’s a balance you see”, or they say “it’s not a governmental issue, it’s NICE and the PCTs”. It leaves patients with nowhere to turn.

What they fail to see, (and I’m sorry to say patients do have some expert knowledge of this as well, because they have to gain it), is the sheer waste that goes on, they don’t see that there is a huge disparity between who gets treatment and who doesn’t. The sad fact of the matter is that Kidney Cancer is seen as a rarer cancer, despite it being the 8th most prevalent in the world. It tops Leukaemia and Cervical Cancer and yet both these have a higher presence/ priority, and because of that treatments are made more readily available.

Balance and fairness, that’s all we ask for. From the outside looking in it seems fair and rational because it’s explained in such a way to make it seem so ….. smoke and mirrors, but from the inside, boy, it’s a different story. Watching families struggle and fight, making patients go through endless battles with their PCTs and NICE to get drugs they know (and their oncologists know) will give them extra time. Extra time to spend with their loved ones, extra time to work, extra time that may lead to a cure. All these things matter.

This is not an attack on Dr Evans or Prof McCabe, it’s not deliberate on their part, and I enjoyed being on the panel with them,. My plea is that they start digging a little deeper than political rhetoric and statistics and look closer at the balance they profess to be looking at. Look beyond at the waste that’s rife in our government and surrounding agencies (and I mean really look). Look at how the drugs are approved, at how closely linked it is to public, or worse, political pressure. I don’t really see a scientific or statistical analysis going on, what I see is…. “if pressure is applied it will be approved”. A good example is our own Kidney Cancer pressure group last year that had to barricade the NICE headquarters to get heard, and guess what? we were heard because enough pressure was brought to bear.

So, are we part of the problem? I suppose we are, but until they get the balance and fairness right we wont stop!

Posted under Andy Thomas, Cancer Drugs, General

This post was written by AndyThomas on October 8, 2009

Lib Dem Conference Fringe Debate on End of Life Drugs…..

I had a great time the other day at the Liberal democrats party conference.  I was invited to sit on a panel to discuss “End of Life” drugs and how N.I.C.E. decide on who should and who shouldn’t be given these drugs.

The panel consisted of Myself as a Kidney Cancer patient, Dr Evan Harris as the Lib Dem MP,  Prof Chris McCabe – Chair in Health Economics at the Leeds Institute of Health Sceince and Mike Hobday, Head of campaigns, Policy and Public Affairs for Macmillan Support.

It was such a shame that there wasn’t more time to get a real debate going, but it seemed that no sooner had we started than it came to an end.  I think all of us on the panel (including me) spent too much time on our opening remarks which left little for questions and answers.

I ended up feeling a bit militant to be honest.  I sensed that the actual patients’ voice is really dissregared in these matters, but I hope I held my own.   My own personal view is that N.I.C.E. add little or no value and are far too driven by cost than they are anything else.

Prof McCabe came up with the ususal “it’s all about balance”, saying that if they allowed the more expensive Kidney Cancer drugs such as Avastin, Torisel and Nexavar that something else would haev to be denied elsewhere.  yeah, yeah, yeah… heard it all before, it sounds like a sensible argument until you look at the waste across the NHS system. 

I brought up the huge waste in the National Program for IT, the fact that in gerneral nobody really wants much of what it proclaims to offer.  Cut this area and you free up money to deliver drugs and treatment to the patients.  The trouble is, if you argue this as a patient you get acused of broadening the debate too much.  Well, you have to broaden it to get people to see sense dont you?

Dr Harris talked about efficiencies, and I suppose I partially agree with this, but there was no real meat behind the statements, no addmission of where those efficiences would come from, and he also defended N.I.C.E’s position way too much for me.  It didn’t like the fact that I’d suggested N.I.C.E should hang their heads in shame for what they have done and how cruel they’ve been.  He even suggested that campaigning was not what we should be doing, we should be lobying our MPs (been there, tried it… falied).  He was also very unclear as to where the responsibilty lay.  One minute he said MPs should only set budget and NICE should make the decisions… next minute he’s asking me to lobby MPs.  Well if MPs aren’t allowed to interfear (in his words) then what’s the point?

At one point an Oncologist stood up and defended Dr Harris by saying that without NICE she would not be able to freely prescribe drugs, to which I replied “had we not campaigned outside of NICE HQ last year you would not have the drugs available to you to prescribe “, so I’m sorry Evan campaigning and pressure groups do work, government does not.

Mike Hobday argued for a more fair balance between the more well known cancers and rarer cancers.  The balance tips far too much towards the more well known ones.  My guess is that this is because of public pressure and visibility, which is hardly the way an organisation such as NICE should behave.

For someone who hates public speaking, I enjoyed it.  Just wished it had been longer so we could get the topics out on the table.  Maybe next time .. (if I get invited back that is)

Posted under Andy Thomas, Avastin, Cancer Drugs, Events, Nexavar, Sutent, Torisel

This post was written by AndyThomas on October 2, 2009