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.

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

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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

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Dear Professor Littlejohns,

I am writing to you directly as a Kidney Cancer patient in regard to your decision to deny Afinitor as a second line treatment.

Why if N.I.C.E. openly admit that this drug shows clear clinical benefit do you not seek to approve it?

As you are well aware there are very few treatments available to Kidney Cancer patients in the UK and as such when one comes along it seems only fair to approve it.

You seem (as usual) to have based this negative decision purely on cost.  The QALY calculation you use for some reason is not disclosed to the public due to  IPR which appears ludicrous given this is a public service.  I think it would be fair and proper to make your process transparent and available to the public at large as these are the people you work for.

As a supposed independent body I would expect N.I.C.E. to act as such and not just follow the direction of the Department of Health.  I expect N.I.C.E. to work in the interest of the patient NOT in the interest of government policy.

What real representation did you have from patients?  How much weight was attached to patients as you came to your conclusions?

It is also extremely unfair to only give the public (patients) a few weeks to put their case together.

Why are we given such little time?  If you want a response from patients then they need to be engaged at an earlier stage.  It is outrageous that we only have to the 2nd March to put a case together.

These drugs offer precious time to patients and families.  We are not talking weeks we are talking significant numbers of months and years (as you are well aware).  What cost do you attach to this?

I would also like to add that as a rarer cancer we are not looking at a significant number of patients that need these type of drugs so why do you attach so much weight to cost when we are talking 100’s rather than 1000’s of people?  At £100/day this is not a significant cost.

Kidney Cancer is not a large drain on NHS resources in comparison to other cancers,  so why are we treated in an inferior fashion?  Is it because we are small minority that can’t fight back?

All we ask for is a level playing field, this is clearly not the case and I would expect you to be addressing this in the interest of the patient NOT in the interest of the people who pay your salaries.

I was also shocked that Ann Keen chose to announce that she was spending money on a new design of hospital gowns the day you announce that you will not approve Afinitor as a second line treatment, this was heartless and cruel.  Disgraceful that we seem able to waste money and resources on items such as these and yet deny patients vital drugs that can give them a real quality of life.

Clearly there are hundreds of other examples within the NHS where resources are being wasted (not least of which is the NPfIT) but there is little point in documenting them each in detail in this letter as you are well aware of it yourself.

I urge you not to respond by saying that you are not responsible for any spend within the NHS or for government policy, rather I would like to hear how you will engage with the government (DoH) on how we can stop this waste. I’d also like to hear how you will start to engage with patients at a real level.  The NHS is a wonderful resource and it is sad to see it being destroyed by bureaucracy in this way.

Please realise that N.I.C.E. is meant to be an independent body working in the interest of the patient and as such we expect you to behave as such not to just throw cost in our faces each time a new drug is presented that offers valuable time and quality of life to people.

I respectfully ask that you reverse your cruel decision and allow Afinitor as a second line treatment for Kidney Cancer patients.  I also respectfully ask that you review what is clearly a floored approval process.

Yours Sincerely

Andy Thomas

97 Sheepcot Lane

WATFORD

WD25 0DU

cc Sir Andrew Dillon

cc Claire Ward MP

cc Richard Harrington

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However, with my Creatinine level a little raised I am being referred to a Nephrologists.. Creatinine is at 112, eGFR is at 44 and UREA (BUI) is at 8.5.    And the Nephrologist is in Internal Medicine, and turns out the same Dr that I was referred to for my racing heart, and who even though I was on heart medication, and I was still up 20 pounds.. sent me for the original scan that found the tumor. So I have faith in this guy.. my GP said he may suggest medication, or just a change of diet.

I feel huge relief, I cried when he told me the result.. and  he said ‘no this is good’ but it was just the relief.

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I was asked the other day by one of our Kidney Cancer warriors in the US about the NHS and what it really means to us day to day in the UK, and would I mind writing a blog on it.  Boy, what a task … take one of of the most widely talked about and explosive topics in the UK, boil it down to a few paragraphs of explanation and then hope to heck you wont get flamed all over the place.

So here goes!  lets keep it simple.

The basic premise of the NHS is to provide comprehensive free healthcare to all.

You can see from the basic diagram below how the organisation breaks down from a governance perspective

Right at the top we have our government (parliament).  The Health Secretary is the person who has responsibility (via Parliament) for the NHS, and has accountability, and responsibility for setting direction and budget. The Health Secretary is also responsible for the Department of Health.

The Department of Health is responsible for running the NHS.  It sets targets, allocates money and generally oversees the management.

The Strategic Health Authorities (SHAs). There are 10 of these (I believe) around the country and they are responsible for ensuring that government policy is implemented at a local level, and they also operate as regional representatives of the Department of Health.

Beneath the SHAs we have the Primary Care Trusts (PCTs), and this is where it starts to get a little complicated (for me anyway).  They are one of the biggest parts of the NHS and spend around 80% of the entire budget  There are 150+ PCTs in the UK and they have responsibility for “buying” the care for the local population.  Sounds odd doesn’t it? Basically it means that if you need treatment e.g. an operation the PCT buys that service from the local NHS hospital. Effectively the PCTs have control over how the money is spent, what treatments are available and what is not. So when we hear about NHS Managers, it’s generally the PCT managers they’re talking about.

Next we have the Hospital Trusts which is where the majority of healthcare workers can be found e.g Consultants, Drs, Nurses etc.  All hospitals are managed by a Hospital trust, there are even different types of trust e.g. a Foundation trust, Ambulance Trust, but it’s not important for this basic description. The trusts are responsible for negotiating with the PCTs what services they can provide based on the budget.

So where do N.I.C.E. fit into this?  Well N.I.C.E. is the independent body that decides which drugs and procedures the NHS should provide.  They offer guidance on these treatments and drugs for the PCTs.  If a patient needs treatment outside of this guidance then that patient will likely have to go through an appeal process with the their local PCT (which is why we hear in the media about the PostCode lottery).  For Kidney Cancer patients in the UK this is where our campaign focus has been, to ensure that new drugs are given positive guidance. At a very simple level if N.I.C.E offer positive guidance on a treatment or drug then the PCTs are obliged to provide it, if not the patient is dependant on the individual PCTs ability to fund the treatment.

So that’s a really really basic description.  I’m sure I may have some of the detail wrong but it should give readers a fair idea about what’s going on.  I wont go into my personal views in this post … I’ll do that next so as to separate the two things.

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When I got there I noticed that the requisition had ‘with Contrast’, and I said I don’t think so.. so they telephoned and checked and sure enough – no contrast.  I realise that if I wasn’t keeping an eye on things, they would have gone ahead and given me the die.  On the requistion I also noticed Creatinine 112, up from 95, and I was not expecting that.  I realise that I have not been drinking hardly any water.. just tea, which I am sure will be why it is back up a little. 

Of course the fact that it is up, is not helping with the nerves, as you wonder if there is something else going on.

I feel very selfish posting yet again about little old me and my problems, whereas the other posts are about N.I.C.E. and all the issues with them, but at scan time, this is seemingly all I can think about.

Writing this is kind of therapeutic for me, writing down the fact that I am anxious about the result, will hopefully take away a little of the stress.

I did recently go for a reading with a Numerologist who is also a psychic, and she said that I am healing, she even said that my aura colors are healing, this is without her knowing about my history. So I am holding on to that, and hoping she was right.

Will update again next week, once I have my result.

Guess what I am doing right now, Drinking water like it is going out of fashion, at least the Creatinine result has been a wake up call for me.

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The great thing though is that they’ve given us a smashing example of how we waste our money in the NHS on trivia that nobody cares about and yet deny valuable life extending drugs that do matter.   Not much logic going on from what I can see. 

So what’s the waste I was talking about?  Well apparently we all care deeply about “backless hospital gowns” and how our dignity is compromised by these odious garments. I have to admit that was the first thing on my mind as I was carted off to theatre for my Kidney Removal (nephrectomy), it certainly wasn’t the fear of maybe not coming out of it, or the fear of a cancer diagnosis, oh no, the fist thing I thought was …“Does my bum look big in this?” (and for those of you wondering, yes it did look big …… very big!)

The Offending Article

Sorry to make a joke of this but come on the BBC what were you thinking? yes it’s an interesting(‘ish) article, but not one mention of  N.I.C.E.s decision today on Afinitor anywhere on either the UK section or the health section of the website?  In an ideal world we’d have an NHS system with enough cash floating around to chuck away on “nice to haves”, but somehow I don’t think we’re there yet.

Maybe I’m doing old “Auntie” an injustice and there is mention of the decision on their website, in which case I apologise unreservedly, and anyway thanks for pointing out that Ann Keen (Health Minister) sees this as a burning issue.  That £25,000 you gave to the design council for the gowns could have funded 5 cycles of Afinitor for a patient……. Nice one Ann!!

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NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health

So you’d think with this kind of remit they’d be working in our favour, and when I say “our favour” I mean the population of the UK and specifically its patients.

Yet when it boils down to it what they really do is to create negative guidance that allows others to wash their hands of the situation, such as the government who can just say “well this is down to N.I.C.E.”.   It also enables PCTs to deny patients treatment despite what the specialists say.

I’ve been to meetings, received mails, read articles where time and time again specialist oncologists are screaming for drugs that they know will help and yet they are denied.  It’s an appalling state of affairs and I would hate to have to be the one that has to give a message to a patient that says “yes, there is a drug that could help, but I’m afraid you can’t have it because it costs too much”.  It’s inhumane.

You can tell this is N.I.C.E.’s stance because of the clear statement again made on their front page

Disinvestment. Decommissioning. Saving money. Whatever you call it, the NHS faces an unprecedented financial challenge.

Use NICE guidance to help you to cut costs and maintain and even improve services.

Ok, so it would be churlish of me to not admit that the sentiment is that they are there to help, but it’s how they go about it that gets me.  This statement is all about costs, where does it really address the need of the patient?

I can plainly see that an independent body such as N.I.C.E. that looks at new drugs and treatments and offers guidance on their usage is no bad thing.  However the guidance is just that… guidance, but the PCTs use this as ”carte blanche” to deny patients, on what basis? Certainly not on clinical grounds.  No, it’s just cost.

I’ll use the example of Affinitor which has just been cruelly denied as a second line treatment for Kidney Cancer patients.  So, here we have a drug that has been clinically proven to work, every specialist (that I know of) in the country is backing this up.  A drug that’s been approved for usage in other European countries and in the US and yet for some reason (cost) we can’t have it in the UK.

What I would love to see N.I.C.E. do is to fight Whitehall on our behalf, not to just sit there and do the bean counting for government.  This organisation seems able to pronounce death sentences on patients by denying them drugs that extend their lives, and yet it seems unable to fight the waste in the NHS and other areas of government.  They are closer to Whitehall than any of us, surely they can see that waste AND actually fight to do something about it?  Why on earth, if they are truly independant would they seek just do the govenerment’s bidding?

Why leave it to patients and the charities to fight? I find it so had to believe that they are impervious to the waste, they probably see it more than we do.  Help do something about it!

So come on N.I.C.E. do what you’re supposed to do, do what you were setup to do, stop being a bunch of bean counters, stop measuring everything against some Qualy calculation.  Stand behind the patients and population you proclaim to be helping.  

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