James Whale Fund for Kidney Cancer in San Francisco? ….

What am I talking about?  Well, I’d completely forgotten about this.  I was looking through some old photos this afternoon of my trip to San Francisco last year and I came across this gem.

Recognise it?

It’s actually the “National Marine Sanctuaries” logo … spookily similar to the James Whale Fund logo eh?  I found it by chance as I was running through “Crissy Fields” on a weekend jog.  It really struck me because not only is the Whale’s tail very similar but the colour scheme is so close as well.

Anyway, I thought I’d share it with everyone.

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Posted under Andy Thomas, General

This post was written by AndyThomas on January 30, 2010

Kidney Cancer Awareness in the UK and Ski Marathons

I’ve got got admit in a bit of a spin at the moment because I still haven’t got any clarity about my current job which makes it very hard to plan out my immediate future.  I’m sure it’ll work itself all out in time so i’ll just have to ride it out and see what the outcome is.  In the scheme of things there are far worse problems to be dealing with, so it’s not a whinge.

On top of this I’ve only got about 5 weeks left before I’m due to do a double cross country ski marathon in Sweden called the Vassaloppet, it’s a 90km run up hill and down dale. Holidays are supposed to be relaxing chill out thing aren’t they?  what were we thinking? I was stone cold sober when I agreed to this so I’ve no-one to blame but myself…. so there’s no backing out. I did however have the common sense not to ask people to sponsor me for it this year because I dont rate my chances :) However if you do feel the urge to give me cash then I’d love some for the Arch to Arc cycle ride.

Vassaloppet Race in Sweden

To be frank I haven’t quite got over the injuries I sustained in Austria a few weeks ago when we did a 42km Marathon.

It was one heck of an experience and hasn’t put me off in any way although I’m not convinced I can get to the 90Km this year …. I’ll be happy if I do any over 50Km. If you are thinking of taking up a sport and want something that gives you a full body workout without the high impact of sports like running then this is the one for you.  Within a week we were all taken from virtually no experience on snow to a full blown marathon, and we were all different shapes and sizes.

Me in the Austrian Marathon

You maybe wondering why there are no other competitors around me in the picture above, sadly that’s because there weren’t any :)   I was very much on my own at the back, but we were so lucky with the weather and views.  I used to live in the French Alps, but I have to say the Dolomites are far more striking.

So my only chance to get fit with all these injuries is on my bike which I don’t think will be anywhere near enough.  I’m trying to do about 6hrs a week on it but I don’t find it’s doing enough, but at least it’s getting me ready for the Arch to Arc ride in June I guess.

So with all this going on I’m finding it hard to focus as much energy as I’d like on the Kidney Cancer stuff, but it’s got to be done.

As part of this I’ve re-branded the Kidney Cancer Bloggers site so it’s a little more tightly aligned to the James Whale Fund’s site …. Let me know if you agree.  As far as the Arch to Arc ride is concerned things are ticking along very well.  We have 14 riders signed up officially and quite a number that have confirmed they will do the same.  The great news is that we have raised over 50% of the target so far which I think for a first bash at this is a tremendous effort by one and all.  I wouldn’t have been able to get this off the ground if it hadn’t been for all the efforts of the team at the James Whale Fund, Nikki and Sarah have worked really hard on this, I feel so guilty…. Thanks!

What’s next on the awareness front for me? I’m not sure to be honest. There’s a big planning session towards the end of February and I suspect much will come out of that.  I’ve been offered some potential free development resource from an IT consultancy which could be useful, however I think we should hold off on executing on this until we have a clear direction of what we need.

I think in principal we have many of the pieces already in place, It’s just a case of consolidating it under one platform rather than the separate entities we have now.  I’m keen to reinvigorate the information provision side using a new CMS solution (Content Management System), having closed down Kidney Cancer Resource I think we’ve left a hole that needs to be filled, recapturing that readership is important.

Anyway, back to the web-site re-branding for me today.  Let me know if you can think of any ideas on the blog-site.

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 January 28, 2010

Come out! Come out! wherever you are…….

With all the work that is going on within the James Whale Fund for Kidney Cancer I’m always increasingly surprised that we don’t see many more people signing up to the forum, blogs and web site.

In the UK around 7500 people per year are diagnosed with this hideous disease.  We know that sadly over half of that number die, which is a frightening statistic in its own right.  Of course a number of the surviving people will have been caught at an early enough stage to be considered as cured (not to tempt fate but I fall into this category), and of course under these circumstances many that fall into the “cured” category will want to try and put it behind them and move on.  This is totally understandable and there are days that I think I should maybe have done the same.  However I felt so strongly about the lack of awareness and information that I took action, and I don’t regret it.

Anyway, enough about me. So where are the others then? The remaining Kidney Cancer patients, the families and friends?

I ran The Kidney Cancer Resource for the best part of three years and managed to build up a daily readership of around 160.  My expectation was for this number to be closer to 1000+ given the annual increase in the community.  But it never happened.  Was I too impatient? Probably, but it did seem very odd to me that given the amount of information available in a standard (wiki) format that the user community wasn’t higher.

I did all I could to raise the sites visibility on search engines like google and got it onto page 1 in most cases, but boy did it take time and effort and an understanding of SEO tactics (Search Engine Optimisation).  By fine tuning these tactics the readership soon doubled, but to me it never warranted the level of work required.  That’s why it made sense to me to close down Kidney Cancer Resource and pile the energy into a single charity in the UK that’s focused on Kidney Cancer i.e. The James Whale Fund for Kidney Cancer.

My main issue is that collectively we’ve been creating multiple sites and organisations around the UK and by doing this all we’re doing is diluting what is already a small total UK readership.  To this extent I saw myself as part of the problem rather than being part of the solution.  So the decision was made to close down and re-focus my efforts.  I suspect I now need to spend more time on SEO tactics for the JWF to raise awareness and readership. But only if they want me to :)

Part 1 of this was to move the rolling news from KCR onto the James Whale Fund’s web-site.  I’ve been looking at the stats over the last few weeks, and yes there is a gentle increase in the number of site visits but still not enough.  My next step will be to speed up the re-direct from KCR to the James Whale Fund site, at the moment it’s set to 15 seconds and I reckon that might be putting people off.

As a slight aside, there is a Patient Advisory Group within the James Whale Fund (which I’m a part of) and one thing I know we’re always looking for is feedback on the web-site.  Is it delivering what people want? Is the information relevant? Was it easy to find? So, as we’re on this subject please feel free to contact me and let me know what you think. My e-mail address is amt@jameswhalefund.org. It’s important to get this feedback, be it positive or otherwise.

However, technology aside I’m still amazed that more Kidney Cancer patients in the UK are not driven to the fund. My conclusion is that ultimately greater public awareness is the only real way to make this happen.  We could make the James Whale Fund no 1 in the google search engine but that doesn’t always translate into a greater audience.  Yes of course it will have a natural increase, however not at the levels we’re seeking.

When I say awareness I really mean at the grass roots level of this disease i.e. when people are initially diagnosed by a consultant urologist or oncologist. Letting people know at the “get go” that there is help out there beyond just the medical.

I look at what the James Whale Fund offers – help that extends to patient support, campaigning for new drugs to be made available, help with appeals, fundraising, awareness, engagement with the medical community, specific training of nurses, information, patient days.

The list is endless and yet this isn’t visible to patients and carers.  If you want to know what’s available and what’s going on you’ve got to know how to search for it on the web.  This is just plain wrong and it’s one area where the hospitals/surgeries could be more pro-active.  Charities such as the James Whale Fund offer guidance packs that could be handed out to newly diagnosed patients. These should be given as a matter of course, it’s not so tough to get these packs approved by the medics.  Patients need an outlet beyond just our medical teams, it’s sometimes as valuable to be able to talk to people who share the same experiences.  Our consultants, Drs and nurses can’t be available 24 * 7.

This view was really drilled into me last night when a friend rang me to say that a work colleague of his was about to undergo surgery to remove a Kidney because they’d found a tumour, and could this colleague contact me if he needed to talk.  Well, of course the answer was yes but why wasn’t the information available to this person? A simple one page leaflet or pack would have lead him to our support group.

I do believe we need a strong web presence, as a geek I cannot deny this, however it’s time people were guided to this presence by professionals rather than having to stumble across it via some sort of random web search.  Until this time I suspect our daily readership will stay around the 100 – 200 level.

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Posted under Andy Thomas, General

This post was written by AndyThomas on January 26, 2010

NHS Constitution became law 2 days ago !!

I was asked for a comment about the NHS Constition today – had to give it some real thought  because I think the NHS Constitution is a great first step to recognising the real sense of ownership alot of patients feel towards the NHS. We feel passionately about our local Hospitals and the Clinicians & Nurses who look after us. But sometimes patients can feel lost because the NHS is such a huge machine with a life of it’s own, so many different organisations each with their own policies, guidelines and initiatives and it’s easy to feel individual patients to feel they don’t matter anymore.

As a survivor of Kidney Cancer, I have so much to thank the NHS for and I do so on a daily basis . Kidney cancer is a type of cancer which is difficult to treat and I’ve received all my treatment from the NHS which cared me during my illness. But I know other cancer patients who have been let down because “the system” is seen to be more important than the patient. The Constitution needs to be matched by actions at the coal face in GP surgeries, Hospitals and PCT’s and organisations like N I C E.

Patients need to know their views are valued – no more box ticking .

Ever  The Optimist  Eh ??  Rose Woodward  www.kidneycancersupportnetwork.co.uk

Posted under Cancer Drugs, General, N.I.C.E., Rose Woodward

This post was written by Rose Woodward on January 21, 2010

Patients lives or lawyers bills ??

During the period that many hundreds of kidney Cancer patients were denied life extending drugs and died prematurely ( these kidney cancer drugs are readily availanble in other parts of the world on social welfare systems) the NHS spent £ 40,000,000.00 – YES 40 MILLION POUNDS – on solicitors and legal fees to two companies for “supporting” the NHS to draft contracts about their IT programmes”. !! The answer came in response to a question by Conservative shadow health minister Stephen O’Brien about the amount spent in legal fees for drafting contracts for the National programme for NHS IT in the Health Service. Health minister Mike O’Brien responded: “Between 1 April 2002 and 31 March 2009, the total fee paid to Allen & Overy amounted to £10,309,877 and to DLA Piper UK LLP £28,864,938, although Allen & Overy ceased to advise after 2006.” You couldn’t make it up ……. If this weren’t so desperately sad and tragic and cruel for kidney cancer patients and other cancer patients denied treatment their Clinicians want to precribe, it would be laughable – who decided this money was an effective use of NHS resources ??? I just to know how and why they had to spend this amount of NHS money which should be prioritised to front line care, on legal advice. Do we not employ enough civil servents that they can give the NHS legal advice. If we don’t and heaven knows why not ,then why not go out and employ someone ? you could hire a lot of IT lawyers for £40 million. It is an unbelievable sum – made worse by the fact we don’t even have a workable It system for the NHS and this sum doesn’t include the IT itself just the lawyers for advising about it. How did someone decide this was reasonable. Someone needs to get a grip of what is going on the NHS and fast, some of the managers are out of control !!

I’ve posted this on the Kidney cancer patient forum at www.kidneycancersupportnetwork.co.uk

Am I the only person who thinks this is totally out of order?

Rose Woodward -

Posted under Cancer Drugs, General, Rose Woodward

This post was written by Rose Woodward on January 20, 2010

Arch to Arc Cycle Ride – Training Plan and Update

I’ve been asked by a few people about the training regime they need to be following in order to complete the bike ride.  And it’s a fair question.

Well, we’ve been lucky enough to secure the support of a UK cycling magazine that have allowed us to distribute a training plan they recommend that gets people from zero to 100 miles in about 12 weeks.  So basically what I’m saying is …. There is time!!

They’ve suggested we modify the plan slightly so it fits our purposes but as it stands it’s a set of (I think) achievable goals each week with plenty of rest days.  We can’t distribute it just yet as they’ve agreed to send us copies of the whole magazine.  So be patient.

If any of you are following me on facebook you’ll see I’ve started cycling already.  Don’t think that this means you need to go hell for leather at the same pace…. I have 2 good reasons for needing to do it now rather than leaving it until later 1) I intend to cycle the route in the next couple of weeks to make sure it’s feasible, pleasant and to try and pick out some points of interest and 2) I have a 90K Cross-Country Ski marathon to try and complete in March and cycling is a great way of building up leg muscle and aerobic capacity without the impact of running.

Given it’s quite cold and dark at the moment there isn’t the desire for all of us to get the bike out of the garage, which makes it hard. My advice (for what it’s worth) is to get out when you can and just get used to being in the saddle, don’t worry too much about distance and pace at this stage (I’m not).  I always find that my first week back in the saddle consists of riding on alternative days until the saddle sore subsides (which it does I promise you).  After the first week I can then start focusing on building up the distance and speed.

If you’re a member of a gym and you don’t want to cycle on cold wet days (understandable) then spin classes are pretty good.  I may give them a go myself.  My partner (Jane) is a personal trainer so I’ll get her to see if she can put a few bits and pieces together.

Keep in mind that with the exception of day 1 from London to Dover (c.75 Miles) these are not huge daily distances.  The key will be as we get closer to June is to make sure that you go out on consecutive training days to ensure you’re capable of doing one day after another. Anyway this will all be part of the plan.

I’ll say again as I’ve said a few times, this is not a race, so we wont all be tearing off all over the place.  It’s the first time the James Whale Fund for Kidney Cancer has run the event and to that end this year will be a “pathfinder” which is why we’re keeping it to around 20 people.   It should be a great mix of people from all over the country and a chance to make some new friends.  We even have one person from Houston Texas flying over to ride with us!

As part of the training pack we’ll also be sending out a registration form to all the entrants so we have everyone’s details and requirements along with the terms and conditions.

And now for the really great news!  We’ve raised over 50% of the money so far, which is just incredible!   Upwards and onwards and thanks to everyone’s efforts.

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

Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on January 20, 2010

Do we need effective drugs or more NHS managers ??

The NHS is a wonderful thing – no longer do whole sectors of our population go without treatment because they can’t afford to see a Doctor………….. But Kidney Cancer patients are still denied clinically effective drugs while the NHS managers reward themselves with huge pay rises and bonuses. In a recent article it was quoted there has been a 43 per cent rise in the costs of managers, while spending on clerical staff rose by 78 per cent at Primary Care Trusts (PCTs) And their expenditure on management consultants and temporary staff more than doubled. We wonder why the Government wastes “ludicrous and heartbreaking” sums on moving bits of paper around rather than front line services. From 2004 to 2008 the Department of Health spend on administration went from £1.43 billion to £2.14 billion – a rise of 49.5%. The total spent on managers went from £566 million to £808 million, a rise of 43% Spending on other administrative staff increased by 78 %, from £606 million to £1.07 billion. According to an analysis of the DoH figures by the Conservative Party PCT spending on outside agencies rose from £53 million to £139 million – an increase of 162 %. That is just unacceptable. Katherine Murphy, from the Patients Association, said too often the millions spent on NHS bureaucracy did little to help patients, while the systems they set up left too many worse off. “These sorts of sums are ludicrous – and especially so given the heartbreaking stories we hear all too often about patients who have been denied their most basic needs,” Mrs Murphy said. Something is very wrong when those tasked with of looking us look after their own interests first !!

Posted under Cancer Drugs, General, Rose Woodward

This post was written by Rose Woodward on January 13, 2010

Predictor of metastasis and mortality after surgery for localised Kidney Cancer….

I just read this news article and published it up on the James Whale Fund for Kidney Cancer rolling news.  

I’m not a medic so I always find these urotoday abstracts a bit heavy going but this one really got my attention.  I fall into this T1-T3N0M0 category and as such I’m pretty darned lucky.  With a good following wind I should be ok, however there is no adjuvant treatment beyond the surgery for this staging and grading (or at least none that I’ve been made aware of).

That’s the bugger with Kidney Cancer, chemo just doesn’t work and I always find it very frustrating when I hear people in conversations talk about cancer as if it’s one single strain that can be zapped by either chemo or radiotherapy.  Kidney Cancer is a strong old blighter.

Back to the article. Basically it sounds like this c-reactive protein can act as a predictive marker preoperatively for metastasis and mortality.  This sounds fantastic and gives the oncologists a better chance of figuring out the most appropriate follow up.  So, the questions I have (which I must remember for my next check up) are:

  • Can it work post operatively? – i.e. could I get this test done now? Or is it too late now the cancer is out of my body?
  • If I could have the test done and it turned out that I do look susceptible to mets then what would be the treatment (if any)

I find it immensely clever that they are able to discover this kind of stuff and with any luck things like this bring us a step closer to real treatments for this disease, adjuvant or not.  Keep them coming!

I’ve always held for me personally that I’m a little nervous that I only have an annual check-up and that I never have a CT Scan as part of this, not even an ultra sound on the remaining kidney … it’s always made me jittery.  Having said that I’m a total whimp about going near Dr’s anyway so to that extent I’m grateful.  I’m learning to just trust the Docs, I know I have a good team and therefore I have to trust them.  However tests like this c-reactive protein would have given me a little more comfort (or greater information).

I’m not totally sure what I’m saying here other than I wish I could turn the clock back and have this test done pre-op just so I know one way or another.  Lets hope it’s something that can benefit others going forward.  I dont know how widespread this is yet but I guess it would be worth asking your specialist if you are awaiting surgery.

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Posted under Andy Thomas, General

This post was written by AndyThomas on January 13, 2010

Kidney Cancer Arch to Arc New Year Update – One Third of the Target Raised!…

Happy New Year to everyone and I’m sorry not to have written sooner, however I’ve been away in Austria on a Cross Country Skiing training week which culminated in a 42K marathon.  There are now places on my body that I didn’t know existed that ache!  But what a sport I can really recommend it if you are looking for a low impact sport that gives a full body workout.

This is all building me up to a 90K Ski Marathon this March called the Vassalopet in Sweden. I’m still not sure if I’ll be fit enough to get through it this time round, but we’ll give it a bash.  If successful (or near to) this year then I’ll do it as a sponsored event for the James Whale Fund for Kidney Cancer next year.

I was pleasantly shocked when I got back to see that we’ve got a couple of new riders who’ve created VirginGiving pages and even better we’ve reached 33% of the target (£20,000).  How brilliant is that!  I know we have more riders to come so this is a significant milestone.

When I think of what this money can do to help us push for greater awareness of Kidney Cancer, patient events, specific training for nurses, campaigning etc it really inspires me to do more.

We simply have to get this hideous disease on the agenda and out of the rarer cancer category.  It is the 8th most prevalent Cancer, higher than either Leukaemia or Cervical Cancer for example and yet both these have higher visibility.  Why is this?

The greater the visibility the more chance we have of getting a voice at the table when it comes to availability of treatments.  This has to change.

Anyway, off the soapbox and back the Arch to Arc Cycle ride to Paris. Half the riders have signed up now with VirginGiving pages and more are on the way.  If you are still contemplating signing up then go for it!! Entrance to the event will be closing in the next few weeks so we can focus on the organisational and fundraising aspects.  Here are the instructinos again if you need them, click on this link.

I’m still hoping to be meeting with the Fund on Friday this week (work permitting) so I’ll have a fuller update after that.

As a slight side issue one of the riders cycling friend’s is selling a couple of bikes if you feel the urge! (probably suit 5’6 – 5’10 rider).  Here are the details:

Little used size medium Planet X Carbon Pro SL (colour: Blue)

  • Veloce front & rear mech
  • Mirage 10sp shifters
  • Chorus 10sp Carbon chain set 172.5 53/39
  • Campagnolo Record square taper 102mm bottom bracket
  • Mavic Aksyium wheels black
  • Conti GP3000 700*23 tyres
  • Veloce brakes
  • FSA compact bars PLT Pro stem
  • Trans-X 31.6 carbon seat pin
  • Outland anatomic saddle

A bargain at £600!

ALSO:

Ambrosio: Celcius full Carbon clear coat frame: 53/54cm centre to top, 54cm top tube c-c, 135mm head tube (very good condition – only used as best bike)

  • Campagnolo Chorus brakes
  • Campagnolo Chorus 10sp Carbon shifters
  • Campagnolo Record alloy square taper 102mm bottom bracket
  • Campagnolo Record alloy chain set 172.5mm 53/39
  • Ambrosio Excellight black 28h wheels
  • Gommitalia Logosport 700/23 tyres (brand new)
  • FSA carbon seat pint 27.2MM (BRAND NEW)
  • Fizik Aliante saddle (brand new)
  • Ambrosio Inverse stem
  • FSA strada handle bars (BRAND NEW)
  • Chorus front mech
  • Centaur rear mech 10sp alloy

Also a bargain £500!

If you are interested then let me know and I’ll give you the contact details.

More news to come but keep those donations coming in!!

Please sponsor me at either VirginGiving or JustGiving

Posted under Andy Thomas, Arch To Arc 2010

This post was written by AndyThomas on January 12, 2010

NICE still say NO to Cancer Patients

Last year the previous Health Secretary, Alan Johnson, promised us greater flexibility from NICE for end of life drugs and yet we have still only been left with one drug, Sutent (Sunitinib).  Our three remaining drugs have since been rejected.  Because of this we cannot be treated sequentially, as in many other countries.  NICE now appears to be on a roll, as they have also rejected Nexavar (Sorafenib), the only option for liver cancer patients.  Also, Avastin (Bevacizumab) has been rejected for bowel cancer patients.  These drugs are available in most other EU countries and our NHS is forecasting yet another massive surplus, this time of £1.476 BILLION!

NICE uses a QALY figure to determine cost which must be no more than  £30,000 pa, a figure that was set in 1999, which they refuse to increase for inflation.  NICE introduced a new end of life QALY at the beginning of this year, which was meant to make it easier for patients to access these treatments.  But this QALY is governed by strict criteria where drugs already licensed for other indications are among those barred from being considered under the system.  This is grossly unfair to patients.

If NICE continues with this tough approach then drug companies will no doubt consider withdrawing some of their new cancer treatments from the NHS assessement process.  Cancer patients in Britain will consequently be denied more effective drugs that are available in other countries.

The sad thing about all this is that kidney cancer patients who cannot tolerate Sutent are already again having to plead with their local PCT for access to a drug such as Afinitor (Everolimus) which has yet to be assessed by NICE.  This drug is considered to be one of the most effective second line treatments after Sutent.

A recent report by the Organisation for Economic Cooperation and Development, shows that Britain still has a lot to do to increase cancer survival rates, which are among the worst in the developed world.  This is despite an above average healthcare spend and investment in nurses and doctors.

I am finding it ever more difficult to ascertain just why our cancer care in this country is in such a sorry state when so much of our money has been invested in healthcare.    It seems to me that we have no option but just to keep on campaigning for the best treatment for cancer patients and to ask what they have been doing with all our taxpayers’ money  – we owe it to the next generation!

 

Posted under Clive Stone, N.I.C.E.

This post was written by Clive Stone on January 10, 2010