Kidney Cancer Bloggers Have your Say

I have been writing to  a wonderful lady – the partner of a cancer patient called Ian Bowers. Ian and his family have been forced to pay for their own treatment for Ian cancer – the drug Ian’s Dr wants to prescribe for him is SUTENT. But Derbyshire  Primary Care Trust  ( using the word CARE  and TRUST in their title seems outrageous  for this organisation)  will not pay for Ian’s treatment despite the fact ( scans to prove it ) the drug is working and is holding the cancer at bay, despite the fact that there is no alternative treatment, for Ian’s condition which is a very rare cancer, and despite the fact that Derbyshire  PCT is sitting on nearly  £2,000.000 – TWO MILLION, YES ………….TWO MILLION POUNDS……….. UNDERSPENT IN THEIR BANK ACCOUNT.

How can this happen in the year 2010 that a patients needs care and treatment – the money is there to pay for the treatment, the treatment is working but the highly paid administrators and NHS managers decide they know better than the Dr.s

This is a terrifying picture of what is happening to our wonderful NHS now the wrong people are in charge of making decisions about our cancer treatment.

I received this from Jane and with Janes permission, I would like to put it here  so that anyone coming to this site  will know what our fellow patients are going through. I find it almost unbearable to read.

Today was the NHS meeting that will decide whether Ian Bowers lives or dies. Of course no-one within the organisation had the decency or compassion to inform us of the outcome by phone. As it is also a bank holiday and the powers that be will doubtless have both Monday & Tuesday off we expect a letter will arrive at the end of next week. Ian has been vomiting for 2 days, which he has rationalised as “a bit of dodgy fish” but I think it is stress. The atmosphere crackles with tension. Our son has sensibly departed to his girlfriend’s house, perhaps sensing any slight misdemeanour on his part will cause WW3.

I consider myself a liberal pacifist but at this present moment I can understand what drives people to snap: to jump off a bridge or drive their car at 100 miles an hour into a wall; or lash out at someone who dares to cut in front and nonchalantly steals “my” parking space. If this was America I could empathise with the kids that take their parents’ guns and let loose in a shopping centre. The tension is unbearable.

This is what no-one in authority, or anyone who has never had to put their lives literally in non elected bureaucrats’ hands comprehends. Not only do we live with cancer and the very real threat of loss on a daily basis but we have also to cope with inequitable, unjust and infuriating systems that measure our lives in terms of algorithms and acronyms. QALY = quality adjusted life years – will this expensive drug give us value for money? Will the patient (an anonymous, faceless entity) live for more than a few months with the drug than without it and is a few months worth the investment. In many cases “no”. The patient regardless of age, current health and well being is not valued as an individual, a human being, but in terms of cost effectiveness. He/She will die anyway so why prolong the agony? Why give him the hope of a “cure” or the opportunity to have some normality, to take a holiday, to say goodbye, to make his/her peace with the world?

“We have to make difficult decisions” the bureaucrats state, I doubt “public health consultants” or “chief executives” ever lose sleep over the fact they have sentenced a human being to an early, agonising and untimely death because they have ensured that the money saved will provide several more meetings with buffets and drinks for their managers to compensate them for the “difficult decisions” they have to make.

Ian is watching inane TV, unsure how to cope with my impotent rage at the injustice of the situation we blamelessly find ourselves in. So I rage quietly in writing and pour another glass of wine. If I have a heart attack it won’t be the extraordinary “stress” these bureaucrats have caused us – it will be my lifestyle choices that are to blame. People say life is just a ride but sometimes I really just want to get off……

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Posted under Cancer Drugs, Rose Woodward, Social Medicine, Uncategorized

I’m in a quandary. I’ve been raising money now for the James Whale Fund for Kidney Cancer over the past 3 years and I hope I’ve been reasonably successful at it, or at the very least played my part .  The Arch to Arc Cycle Ride is clearly the one thing that I can point at and call an achievement, yes it would have been nice to have had a few more riders this year however it’s the first time it’s been done and it’s been kept deliberately small this year whilst we find our feet and discover the SNAFUs with a smaller more manageable group.

The great news is for this year, we’ve hit out £20,000 target, which I think for a dozen or so people is an absolutely amazing achievement, so yet again, thanks to everyone on the team, you’ve all been brilliant! and I’m so looking forward to just getting on and doing it in a few weeks time.

It has to be said that no matter how much advice you glean from others that have run these types of events it’s still a learning experience when you do it.  It’s a bit like riding a bike really, you can be told exactly what to do and how to do it, but it still takes a while to find your balance once you get on.  I know there maybe some folks that felt it might have been best if we’d gone with a larger group.  Well, we did take that into consideration but the Fund really wanted to do this for themselves, and I can see why.  If you go with a larger group of charities you’re diluting the message you want to get across.  It does mean the growth and learning curve is going to be steep, but the net result, we hope, is that we have an event that is wholly specific to Kidney Cancer…. “from little acorns” as they say.

So what’s my quandary?  Well, it’s that steep growth curve I want to achieve.  There are two things that concern me.  One is personal:

• How do I raise £2000/£3000  year on year? How do I go back to my friends and colleagues each year asking again and again? It’s a big ask.  Everyone has been very generous and I get a sense that people get “Giving Fatigue” … I know I do.

So what do I do?  Do I get a new set of friends? …. well that’s not terribly logical and I’m quite happy with the ones I’ve got.  However, if I can’t keep on asking for their money maybe I need to engage people in a different way and ask them to push the event harder on their own Social Networks i.e. Friends of Friends. That’s one way I guess, but I sense the message will get more and more diluted the further the degrees of separation.

I think the real answers for me are four fold

1. I need to engage local business more than I’ve done so far and get out there and pound the streets a bit.  It’s the annual donations that will really make a difference.
2. Look at doing little mini-events like Curry nights or maybe even mini-cycle events.  We could look at creating a James Whale Fund for Kidney Cancer Sportif around the Watford area (or Cambridge where the charity’s based)
3. Try and engage the Social networking wizzards like JP to see if they have ideas on how you can mobilise an army of twitter & facebook friends/followers
4. Make sure that we publicise what the charity will be using this money for and how it can help patients and their families.  I’ve often been asked that question this year, especially from those people who work in a health related profession.  I can’t tell you how important that is, there are quite a few people out there that are reticent to give because they’re not sure if the money will be used wisely.

My seconnd quandry is less personal but still relevant to the first one:

• How do we attract up to 200 people onto this event, year on year?  What’s the hook?  What will make people choose the James Whale Fund for Kidney Cancer instead of something else?

I really don’t have any real answers to this, but plenty of ideas

• Clearly, we’re going to have to make it good … year on year.
• Get each of the major cycle shops (like Evans and Cyclesurgery) to put adverts up on their web-sites and in their shops
• Advertise in the cycle trade journals
• Write articles for one of the trade journals on this years event

However what I really want to do is to tap into the family and friends of Kidney Cancer patients.  I think this is where we could make this event a really special thing.  I love the fact that as a Kidney Cancer survivor myself I can give back by taking on this type of challenge, and there has to be more folks like me that feel the same way.  I have my health, which is the one thing I can give.  If you’re in the US or anywhere else in the world this could be a great way of tying it into a European holiday.

So to all you fellow survivors or patients, pass this message onto you nearest and dearest, and to your friends.  See if they want to come along to next year’s event.  Lets see if we can grow this event into something really special.

If anyone has good ideas or ways to push this then please let me know, I could use all the help I can get!

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

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Posted under Arch To Arc 2010, Arch To Arc 2011, General

Well we’re less than a month away now and everyone’s been training and working hard to make this a sucess. It  looks as though we’re going to exceed our £20,000 target by a decent amount so we’ve ticked all the boxes.

Now we need your help, clearly if you haven’t donated then please click on the links at the bottom of this blog and give all you can, however it would be great to see as many of you as possible at the start line at 7:30 am Thursday 24th June. It’s an early start but if you could make it there to wish us well we’d love to see you.

For those of you who want to plan a weekend away in Paris at that time then we’ll be at The Arc de Triomphe on Sunday 27th June at around 1pm – 2pm, after an event such as this it’s always nice to see people at the start and finish to wish you well.

I have a friend who works in Paris who says he may join us on his bike for some of the last leg of the journey.

So come on down to London or come on over to Paris and help us raise awareness for Kidney Cancer… we’d love to see you!

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

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Posted under Arch To Arc 2010

Before I move onto the Arch to Arc ride I thought I’d report on my time at the KCA patient day a couple of weeks ago in London.  It was a long but interesting day covering a varied set of topics ranging from the very scientific to the practicalities of dealing day to day with the side effects of treatments.

I did take some notes on the day but to be honest looking back on them they’re probably of little value to anyone.  Anything that helps raise awareness is always a good thing.  What it did highlight to me (and I dont mean this to sound bad) is that most of the questions were directed at the nurses who were able to provide really good practical advice to patients about the control of side effects and the various treatment options.

There was one area they touched upon and that was patient appeals for drugs not approved by NICE and I wanted to bring readers attention to that.  Please dont feel you’re alone with this; Rose Woodward and Julia Black are always available to help you wade through this.  If you want to contact either of them then go via the James Whale Fund forum (Kidney Cancer Support Network).  Appeals can be very fraught, so realise there is help out there.

Anyway, onto the Arch to Arc. We’re down to the last few weeks before we set off and I’m getting really twitchy and excited by it.  Myself, Nikki and Sarah from the fund are off on a jaunt to Paris next weekend after the riders get together in Cambridge on Saturday.  Why are we doing this?  Well, we want to check the route one more time (by car) so everyone is comfortable that we know where we’re going and where the best stop off points are along the route.  Yes I cycled it a month back but I have to admit that it was hard work and I wasn’t as able to take as many notes as I’d hoped.

What we want to do is break the route out into 20 mile’ish chunks so we all get regular breaks which is pretty much what you’d expect on an organised ride of any sort.  We want it to be a fun run, not a race!

I know lots of the team are starting to do really long rides (75 Miles+).   I’m so pleased that we’re all out there training, it at least means we know what we’re in for.  I get the odd message from Sally, Sam, Trevor and Jeanie telling me of their exploits (which is spurring me on to do more training).  Some of them have been doing these things called “Sportives” which seem to be events organised by local cycle clubs that can give you a 50 – 100Mile organised run, you may want to check them out, here’s the link.

I had a great ride this weekend called the Hyde900 (Wantage to Winchester) with Ptol (another of the riders). It was about 53 Miles through rolling countryside. I’m for sure going to do that one again next year as it was so much better than the London to Brighton.

However here’s a lesson for all us riders. Please, please make sure your bike has had a good service through a reputable bike shop before you embark on this.  I had mine serviced just before I went to Paris last time and it’s already worn out.  I need new front cogs, a new crank shaft, new headset bearings and pedals (some of it was in a pretty dangerous state).  I took it in by chance today to get a “granny” gear fitted only to find that was the least of my problems.

If you’re like me you just get on the bike and ride it, I’m not much for servicing it myself or doing general maintenance, ergo it gradually starts wearing out without me knowing it.  So dont forget, get somebody to give your cycle a quick look over, dont rely wholly on your own judgment no matter how experienced you are.

Good news as ever!! We’ve collectively hit over 90% of the £20,000 target and the money keeps on coming in.  This money is going to really help, and I think for the first year it’s an amazing effort.  Special Thanks has to goto Sally Hewitt who has raised over 1/4 of the money so far … go team Sally!!

So, we’re onto next year then … who’s up for it? We’re starting to take names, our target is 50 people to raise £50,000.  It’s an ambitious target but you have to have ambition, right? If you want to sign up then the details can be found on either facebook or at the James Whale Fund web-site.  Pass the word round to those who wanted to do it this year or who expressed an interest.  If you’re cycling in these Sportive type events then pass it along to those you meet on the way.

Keep on pedalling and hope to see most of you this Saturday, if not then see you at the Arch!

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

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Posted under Arch To Arc 2010, Arch To Arc 2011

I keep reading various blogs and comments on articles in the press – you know where people go on and give their comments at the bottom of the article – saying that the issues around David Cameron’s election promise to set up a Cancer Drugs Fund and the scandal of patients who can’t get drugs on the NHS are just plain wrong – well the facts are 100% accurate , many people just don’t bother to find out what actually happened before having a go or some even saying he was lying…..

Fact – these kidney cancer patients visited David Cameron with Clive Stone in August 2008.

N I C E initially refused to fund this drug.

100′s of kidney cancer Patients including those in Camerons constituency were refused Sutent, the drug their NHS Consultant Oncologists wanted to prescribe for them, before N I C E did their U Turn in March 2009.

Following unprecendented protests from Clinicians, MP’s, patients, Cancer Research UK , Macmillan Cancer Relief, National Cancer Research Institute and public ridicule from many of the other health systems ( including social welfare systems) around the world who provided Sutent to their cancer patients, N I C E were forced to admit they had got it wrong.

N I C E took 3 years to reinvent the wheel over this drug during which time 100′s of cancer patients were denied drugs and died prematurely. 100′s of families watched loved ones die early and 100′s of Doctors and Oncologists watched their patients die before their time because they were not allowed to do their job and prescribe proven clinically effective drugs.

And that was the scandal , thankfully it did not affect the families of the people who are making these allegations against DC. However those families it did affect deserve a little compassion.

How sad that people think it is OK to use us a political football.

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Posted under Uncategorized

It’s been a while since I last wrote a blog, however it’s been a very busy time for me having just started a new job.  My focus has been elsewhere, however it hasn’t stopped me training and getting myself ready.

The biggest pain I’ve had to deal with is thinking I’d be able to commute to my new job and have a safe place to put my bike, sadly no …..  so I’ve had to purchase a foldaway bike that I can keep by my desk.  I’m amazed at how good it is, clearly it’s not quite as fast as my road bike, but it’s pretty close and has the same riding position.  So I’ve done 120 miles on it this week!

I’ve also got a couple of big rides coming up, the Wantage to Winchester and the London to Brighton.  Both of these are around 50 miles so will be great warm ups for the London to Paris, and dont forget that those of you on the team that want to get together, we have the 22nd May to look forward to.  I hope that everyone on the team has been busy building up their mileage, it’s not long now before the big event.

Jane, my wife’s, been busy and completed the London Marathon in an impressive 4hrs 20mins for the James Whale Fund

London Marathon 2010

Quite a day, I’ve never been to one before and it’s great to see London with no cars.  I might try for it myself next year if I can summon up the energy to do all that training.

The Arch to Arc fund raising is going very well, we’re getting really close to our £20,000 target and it’s made me think that it’s time to start contemplating 2011.

It may seem a little early to start planing the next ride, but to be honest I’d like to see if we can get 50 riders signed up next year.  I’ll be creating a facebook page inviting people to sign up so for those of you who missed out this year and want to be part of it in 2011 then now’s your chance.  Just get in touch with me.

To bring the need of raising awareness a little closer to home for me an ex-work colleague of mine sadly passed away this week of Kidney Cancer (so I’ve been told).  It was a total shock to us and I dont think many of us even knew he’d been ill.  Such a shame, he was a great guy and well liked, and so young.  My heart goes out to his family.

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Posted under Andy Thomas, Arch To Arc 2010, Arch To Arc 2011

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Posted under Christy